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As I watched this video today I felt like I knew this little boy. His actions, his humming, his behaviors are almost identical to what I see at home on a daily basis. Seeing the progress he has made makes my efforts even more fueled.
Raising children with special needs is by no means easy, but it certainly contains more powerful reflections on just how easy we have it compared to them. How we take so much for granted and yet complain about it. Seeing my boys go through what they have to go through, all the doctors visits, therapies, behavior modifications from "professionals", and daily struggles to make people understand what they want... I have no right to complain about the price of tea in China.
Showing posts with label PDD Autism. Show all posts
Showing posts with label PDD Autism. Show all posts
Friday, July 22, 2011
Monday, January 31, 2011
A look into our morning....
One thing that my twins with Down Syndrome and Autism do on a daily basis is stim.. Stimming is a word that I was not familiar with before having my boys. Now its a daily word. I still find it "cute" hearing the boys in unison humming and dangling things at the same time. I caught a minute of it on video to share this morning. This often times calms the boys and gets them ready for their full day of school ahead of them. We try not to encourage this out in the public but sometimes it doesn't work. The boys often like making themselves heard like this during church. At first we were nervous about it, but my church family has embraced the boys and say they love hearing them sing :)
Monday, December 13, 2010
My F-A-M-I-L-Y and friends, take a moment and read this please
**I found this today on one of the causes I take part of on Facebook, as I read it I had tears in my eyes, knowing that the girl that wrote this was speaking out for my Caleb and Isaac as well. What we can learn from people with Autism... I just ask that you take a minute to read this and understand WHY my boys stay in the bedroom or have to go into a corner and hummm and play while we all eat and do our thing on holiday get togethers. This also would be a good read for my church family to try to understand what the boys are doing during service alot of times.
AUTISM and CHRISTMAS
Dear Family and Friends:
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings.
Christmas is one of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.
Sometimes I may seem rude and abrupt, but it is only that because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard.
When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you-I am not. Rather, I am hearing everything and not knowing what is most important to respond to.
Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.
If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people–I just have to get up and move about. Please don’t hold up your meal for me–go on without me, and my parents will handle the situation the best way they know how.
Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky-I literally cannot eat certain foods as my sensory system and/or oral motor coordination is impaired. Don’t be disappointed if Mom hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things–just please be patient with me, and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it “self regulation,” or “stimming’. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is kind-a-like self- regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.
Please be respectful to my Mom and Dad if they let me “stim” for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents’ feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.
Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person–an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you’ll try to view the world through my eyes!
*Author, Viki Gayhardt
AUTISM and CHRISTMAS
Dear Family and Friends:
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings.
Christmas is one of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.
Sometimes I may seem rude and abrupt, but it is only that because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by OK. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard.
When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you-I am not. Rather, I am hearing everything and not knowing what is most important to respond to.
Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.
If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people–I just have to get up and move about. Please don’t hold up your meal for me–go on without me, and my parents will handle the situation the best way they know how.
Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky-I literally cannot eat certain foods as my sensory system and/or oral motor coordination is impaired. Don’t be disappointed if Mom hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things–just please be patient with me, and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown ups call it “self regulation,” or “stimming’. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is kind-a-like self- regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.
Please be respectful to my Mom and Dad if they let me “stim” for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents’ feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.
Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person–an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you’ll try to view the world through my eyes!
*Author, Viki Gayhardt
Sunday, October 3, 2010
You Baby Can Read Month 6...
Volume 4, however, has proven to be more difficult for the twins. Not because of the vocabulary words introduced, but the speed at which the words flash across the screen. I presume they are able to read them, but they can in no way sign them fast enough to communicate them to us. When shown the words, they can sign them one at a time, but when shown three words, they will only sign one of them. This is another hurdle we face with them being non-verbal. They know well over 250 to 300 signs, but they still don't put them together in sentence form at all. I will continue to use volume 4 with them for another month.
Just for fun, both boys LOVE for me to write words on the magna doodle. They love to show off. They love to learn new words. My husband Tom has even written words down that are not on the flashcards, books, or video and they have signed it right. We were amazed!!!! I think because they watch Signing Times videos as well... these videos teach children to sign with animation, music and sign language BUT they also have the written word on the screen. I believe the boys are learning those words as well now.
I am totally happy with this program. I would totally recommend the program to anyone on the fence about starting it. I plan on continuing with the program and beyond. I thank Dr. Robert Titzer, Ph.D. for coming up with a program that teaches children who are very visual learners to succeed in their reading journey.
Friday, August 20, 2010
Cast Cooler - A product review
So a few weeks back I was blogging about Calebs accident and posting photos of the lil guy in his cast, when I had a nice gentleman leave a comment showing his concern for Caleb and wishing him well while in his cast. He then went onto suggest a product for me called the CastCooler. I went ahead and checked out the site with an open mind, after reading the stories and the testimonies I seriously thought this might be something I would be interested in purchasing. I was hesitant to click on the purchase button fearing the "price of medical equipment" would be to high for me to even consider buying it. I was plesantly surprised at the very low cost and decided to give it a try. BOY am I glad that I did.
Caleb is a non-verbal 4 year old child with Autism, Down Syndrome and Sensory Processing Dysfunction. I knew he was in pain or discomfort just by his actions and body language but I didn't know exactly what was going on with him. I read about the Cast Cooler and decided that it was worth a try. In all honesty I thought I was going to buy this product and never be able to even use it on Caleb as he's not much for being right near the sweeper when its running. The first time I put the cast cooler on him, I did just that. I put it on and we talked about it. The next time, I explained to him that I was going to try to help him with his boo boo. He looked confused but he permitted me to put the sweeper on the attachment. It was amazing his reaction, I was thrilled that the reviews that I read on the CastCooler site were actually happening right here in my own living room. He looked relieved, he was not scared, he had such a nice relaxed smile going on that I had to capture it with a photo. Below is his reaction:
The cast is made of a very porous material, the cast cooler and the sweeper actually circulated the air from inside the cast and provided Caleb with some relief from the itching and it kept the cotton inside dry. It also sucked the odor out and kept him smelling fresh like for the 8 weeks he kept the cast on. We the cast was cut off today I was anxious to see if it was smelly or not. It was NOT!! Other than the little bit of urine that gathered in the diaper area that could not have been helped, it just had a slight body odor scent, nothing terrible like some of the stories I've heard before.
If you or anyone you know breaks a bone in the future (I hope not) I would recommend the CastCooler!! I will be storing this away in a safe place for future use. With five children, I'm certain that one day or another we may need to use this again.
Cast Off Day!!!
8 Weeks..... 8 Weeks.... that was Caleb's (and our) entire summer.. From June 24 to August 20 he wore the "big purple cast". He sat in the stroller and on the couch for countless hours watching television, reading books, and sleeping his summer away. Since it was not really fair for the rest of us to be outdoors enjoying the pool or doing lots of activities we all pretty much stayed home and sucked up the air conditioning right along with Caleb.
Amazingly, the 8 weeks went rather fast. He had some amazing positions that totally did not look comfy to any of us at all....
But I guess when you don't have a choice you make due. Caleb was a true trooper and I would never ever ever!!! wish this on any child, but if it had to be one of my kiddo's Caleb was the one that would just go with the flow more than the others.
Today we got his SPICA cast removed. It was not a pleasant experience for an Autistic child with Down Syndrome and Sensory Processing Disorder to endure, but once the sawing was all done and the cast was removed he was actually quite exited that he could see his leg again. He was anxious to get into the car and come home. This was a photo I took in the car on the way home
Talk about dry scaly skin!!!! He kept itching it the whole way home, but I think he was doing it just hard enough to remove some of the skin, he didn't make anything bleed or anything. The GROSS GROSS thing and a recommendation I can now make to anyone traveling home with a child who just got off a very large cast in the summertime. WARNING: Do NOT, I repeat, DO NOT roll down the windows to let air into the car. You will have dry skin floating all over the car, including in your hair, around your face, and out the windows.. EWWWWWW!!!
We got him home and to celebrate we had his favorite dinner of Pizza and then he got into the tub for the first time in 2 months and sat and soaked and splashed in a Mr. Bubble Bubble bath for more than an hour..
I must say, I am SHOCKED and surprised that they did not recommend physical therapy for Caleb. We were told that the healing is going to take several months and they said that sometimes physical therapists can be hard on the patients to get them back up to par quicker and she did not see any reason to make this child suffer more than he already has. She said the his fracture site is not tender or sore, however, his joints and muscles are stiff and sore. We are to give him tylenol for the next several days for pain and she said that if he's motivated to move around ( he is!!!!) then he will figure this out much like he figured out how to get around in his cast like he did. Makes sense to me. We will go back in 6 to 8 weeks for a follow up, if at that time he is still not walking to his full capabilities then we will discuss further therapies. WoW, go Caleb.. I am excited to see how things come along in the following weeks. I will say that we have been home a whole two hours at the time of this blog and he is not moving his leg hardly at all, its still straight out and in the same position it was in the cast. At one point, I think he got brave and tried to bear weight on his knees and fell to the ground crying.. just like an animal has instincts on how to heal, so is true of my boy Caleb. We shall see how he progresses and I will share it all with you.
We plan on hitting the pools next week, the last week of summer before school!!!!
Amazingly, the 8 weeks went rather fast. He had some amazing positions that totally did not look comfy to any of us at all....
Today we got his SPICA cast removed. It was not a pleasant experience for an Autistic child with Down Syndrome and Sensory Processing Disorder to endure, but once the sawing was all done and the cast was removed he was actually quite exited that he could see his leg again. He was anxious to get into the car and come home. This was a photo I took in the car on the way home
Talk about dry scaly skin!!!! He kept itching it the whole way home, but I think he was doing it just hard enough to remove some of the skin, he didn't make anything bleed or anything. The GROSS GROSS thing and a recommendation I can now make to anyone traveling home with a child who just got off a very large cast in the summertime. WARNING: Do NOT, I repeat, DO NOT roll down the windows to let air into the car. You will have dry skin floating all over the car, including in your hair, around your face, and out the windows.. EWWWWWW!!!
We got him home and to celebrate we had his favorite dinner of Pizza and then he got into the tub for the first time in 2 months and sat and soaked and splashed in a Mr. Bubble Bubble bath for more than an hour..
I must say, I am SHOCKED and surprised that they did not recommend physical therapy for Caleb. We were told that the healing is going to take several months and they said that sometimes physical therapists can be hard on the patients to get them back up to par quicker and she did not see any reason to make this child suffer more than he already has. She said the his fracture site is not tender or sore, however, his joints and muscles are stiff and sore. We are to give him tylenol for the next several days for pain and she said that if he's motivated to move around ( he is!!!!) then he will figure this out much like he figured out how to get around in his cast like he did. Makes sense to me. We will go back in 6 to 8 weeks for a follow up, if at that time he is still not walking to his full capabilities then we will discuss further therapies. WoW, go Caleb.. I am excited to see how things come along in the following weeks. I will say that we have been home a whole two hours at the time of this blog and he is not moving his leg hardly at all, its still straight out and in the same position it was in the cast. At one point, I think he got brave and tried to bear weight on his knees and fell to the ground crying.. just like an animal has instincts on how to heal, so is true of my boy Caleb. We shall see how he progresses and I will share it all with you.
We plan on hitting the pools next week, the last week of summer before school!!!!
Monday, August 2, 2010
Your Baby CAN Read... Month FOUR
Well, better late than never. I am trying to update my blog monthly on how the boys are doing with this program. I am one week late today. As some of you may know, we have dealt with ALOT the past 5 weeks with Caleb having a broken femur and being in a 1/2 body cast, so being one week late is pretty good. With Caleb being in a SPICA cast and not mobile at this time, he's been watching alot of tv. The boys usually watch way more tv than my other three children ever did, but Caleb is watching hours and hours of television everyday. This being said, its good for him using this program because he loves watching the Your Baby CAN Read DVD's. He claps when I put them in, so I know its not a chore to watch them, its enjoyment for him. Isaac enjoys them very much too, but he's really into running around and playing with toys alot now too, so he may not sit and watch the whole video but he definitely knows his favorite parts as you will hear his little feet pitter patter across the house to come and listen when his favorite song being sung.
We still goto Speech Therapy and Occupational Therapy twice a week. One boy in session for 1/2 hour the other boy in the waiting room for 1/2 hour doing flash cards or reading through the books. As I mentioned last month, its still completely priceless to see the jaws dropping on the other people in the waiting areas watching the boys reading and signing the words and the pure excitement the twins show by being right.
I am not having the best luck with capturing this on video. I cannot figure out how to get my video from my video recorded to my computer and the cell phone that we used this month seems to not have audio?? So I apologize for the quality of this video but even without sound you can see what words they are reading by their signs. And if you don't know sign language.... well, trust me.. They ARE reading!!! Our tally is about 50 words now that they are recognizing and reading. Its so exciting and still very encouraging that these boys WILL be readers!!!
The first video is them watching Level 3 DVD
The Second Video is them reading from the My First Words book which contains 30 words for growing minds, they can read every one of the words. We are still working on signs with them for zebra, umbrella and bucket, but they recognize the words, just can't communicate them to us yet. I am VERY happy about this!!
I am still totally amazed at the response we've seen out of the boys with this program. I am anticipating great things from both boys in the future!!!
We still goto Speech Therapy and Occupational Therapy twice a week. One boy in session for 1/2 hour the other boy in the waiting room for 1/2 hour doing flash cards or reading through the books. As I mentioned last month, its still completely priceless to see the jaws dropping on the other people in the waiting areas watching the boys reading and signing the words and the pure excitement the twins show by being right.
I am not having the best luck with capturing this on video. I cannot figure out how to get my video from my video recorded to my computer and the cell phone that we used this month seems to not have audio?? So I apologize for the quality of this video but even without sound you can see what words they are reading by their signs. And if you don't know sign language.... well, trust me.. They ARE reading!!! Our tally is about 50 words now that they are recognizing and reading. Its so exciting and still very encouraging that these boys WILL be readers!!!
The first video is them watching Level 3 DVD
The Second Video is them reading from the My First Words book which contains 30 words for growing minds, they can read every one of the words. We are still working on signs with them for zebra, umbrella and bucket, but they recognize the words, just can't communicate them to us yet. I am VERY happy about this!!
I am still totally amazed at the response we've seen out of the boys with this program. I am anticipating great things from both boys in the future!!!
Tuesday, April 20, 2010
Annual Down Syndrome Clinic Visit
Today we traveled to Pittsburgh to take the boys to the Down Syndrome Clinic. I always feel so encouraged and ready for action after leaving this place. Talking to a doctor (or our case this time a wonderful Nurse Practitioner) who's main job is dealing with children with Down Syndrome on a daily basis give us more confidence that we are doing everything right and giving the boys everything we can to hopefully make them as independent as they are capable of being when they are adults.
We had GOOD News today and BAD News today. I'll start with the good.
We were told that their receptive language is very good, to the point of high functioning good. Their cognitive ability to process what they are being told to do was a pleasant surprise to Ms. Susan and as she put it, with their rough start they are doing wonderful. The fact that they know and use approximately 200 signs was a huge bonus for them. Our main push with everything now is to get aggressive outpatient speech therapy and occupational therapy which includes sensory therapy. We have been on a waiting list for a new Autism clinic opening soon in Ridgeway called Possibilites... which is fully equipped for sensory integration dysfunction.. BUT we were told not to wait any longer and get them started right now. So I will be making some calls tomorrow to set up an evaluation to get them started more local and ASAP. Overall, we got the thumbs up for how well the boys are doing.. My main concern is speech and we were told that it still could very well come for them, don't give up and keep on doing exactly what we're doing... Keep on Keepin on, that's what we'll do.
Now the Bad News :(
When the boys have exams its often hard for the doctors to make sure their testicles are both decended.. Today it was confirmed that they do in fact need to see a urologist about getting the surgery needed to help out with this situation. Isaac may very well need re-circumcised as we foresee issues when we try to start potty training him.. So I will be calling a urologist tomorrow too. Then we are being referred to a new ENT as both boys have very large tonsils and she recommended we do a sleep study and remove the tonsils, but ask that we get a second opinion from the ENT about all of this and perhaps get another cookie swallow done on both boys to see how they are doing with drinking thin liquids. If they are not aspirating we could stop thickening their milk everyday. This would be HUGE!!! We are also to consult with a podiatrist regarding one of Calebs toenails. It is split the whole way to the cuticle and it never grows out, it just keeps splitting and splitting?? So it may be ingrown to the point of a surgeon needing to remove the toenail to let it start growing out fresh again... And last but not least, the wonderful thing about Children's Hospital in Pittsburgh is that if you have a surgery scheduled with sedation and your kiddo's need any other work done they can coordinate as much as they can under one anesthesia, so if and when they go into surgery we will also schedule dental work be done on them.
So the little buggers have some issues with health that we need to address and get taken care of this summer, but hopefully everything is for the best and they will have a quick recovery from everything. One interesting statement from today is that if they get their tonsils removed, it could possibly help with their feeding and swallowing issues AND with their speech... hummm, at this point anything sounds good to me to promote speech.
I am encouraged and proud of the boys at today's report of how well they are doing. Its been alot of work for them and for us, but worth every minute of it. Now if we can just get all the doctors appointments out of the way that we're going to have to goto and get the surgery over with, we can start potty training these smart lil buggers :)
We had GOOD News today and BAD News today. I'll start with the good.
We were told that their receptive language is very good, to the point of high functioning good. Their cognitive ability to process what they are being told to do was a pleasant surprise to Ms. Susan and as she put it, with their rough start they are doing wonderful. The fact that they know and use approximately 200 signs was a huge bonus for them. Our main push with everything now is to get aggressive outpatient speech therapy and occupational therapy which includes sensory therapy. We have been on a waiting list for a new Autism clinic opening soon in Ridgeway called Possibilites... which is fully equipped for sensory integration dysfunction.. BUT we were told not to wait any longer and get them started right now. So I will be making some calls tomorrow to set up an evaluation to get them started more local and ASAP. Overall, we got the thumbs up for how well the boys are doing.. My main concern is speech and we were told that it still could very well come for them, don't give up and keep on doing exactly what we're doing... Keep on Keepin on, that's what we'll do.
Now the Bad News :(
When the boys have exams its often hard for the doctors to make sure their testicles are both decended.. Today it was confirmed that they do in fact need to see a urologist about getting the surgery needed to help out with this situation. Isaac may very well need re-circumcised as we foresee issues when we try to start potty training him.. So I will be calling a urologist tomorrow too. Then we are being referred to a new ENT as both boys have very large tonsils and she recommended we do a sleep study and remove the tonsils, but ask that we get a second opinion from the ENT about all of this and perhaps get another cookie swallow done on both boys to see how they are doing with drinking thin liquids. If they are not aspirating we could stop thickening their milk everyday. This would be HUGE!!! We are also to consult with a podiatrist regarding one of Calebs toenails. It is split the whole way to the cuticle and it never grows out, it just keeps splitting and splitting?? So it may be ingrown to the point of a surgeon needing to remove the toenail to let it start growing out fresh again... And last but not least, the wonderful thing about Children's Hospital in Pittsburgh is that if you have a surgery scheduled with sedation and your kiddo's need any other work done they can coordinate as much as they can under one anesthesia, so if and when they go into surgery we will also schedule dental work be done on them.
So the little buggers have some issues with health that we need to address and get taken care of this summer, but hopefully everything is for the best and they will have a quick recovery from everything. One interesting statement from today is that if they get their tonsils removed, it could possibly help with their feeding and swallowing issues AND with their speech... hummm, at this point anything sounds good to me to promote speech.
I am encouraged and proud of the boys at today's report of how well they are doing. Its been alot of work for them and for us, but worth every minute of it. Now if we can just get all the doctors appointments out of the way that we're going to have to goto and get the surgery over with, we can start potty training these smart lil buggers :)
Saturday, April 3, 2010
Long Overdo - Hairdo
So we after having to cancel two hair appointments because of one or another of the twins being sick over the past several weeks, we finally got around to getting their haircut before Easter.
I myself, LOVE the long curlies. I love them!!! But they get mangled and tangled and they are not happy to have their hair brushed so many days we just went without and it wasn't pretty.. I have some family members (uhem... Megan) who teases me for not getting the boys hair cut more often. Its not an easy process, I love the long hair look on them, and I don't just pick them up and take them to a barber shop.. I have a wonderful friend come right to my home and do it. Not only do I have to coordinate our busy schedules, but I also like to have TSS staff on hand so we can hold hands down, sing and dance, hold head still when needed, and help in any way to get it done as quickly as possible. So I have to hire a STAFF of people to get it done... LOL
I thought I would photograph a little more this time because it is such a fun time :)
I myself, LOVE the long curlies. I love them!!! But they get mangled and tangled and they are not happy to have their hair brushed so many days we just went without and it wasn't pretty.. I have some family members (uhem... Megan) who teases me for not getting the boys hair cut more often. Its not an easy process, I love the long hair look on them, and I don't just pick them up and take them to a barber shop.. I have a wonderful friend come right to my home and do it. Not only do I have to coordinate our busy schedules, but I also like to have TSS staff on hand so we can hold hands down, sing and dance, hold head still when needed, and help in any way to get it done as quickly as possible. So I have to hire a STAFF of people to get it done... LOL
I thought I would photograph a little more this time because it is such a fun time :)
Tuesday, December 29, 2009
Ohhh... Caleb Now what??
Have you ever had one of those scary moments that you don't know if you should panic OR run for your camera? I had one of those moments the other day. Caleb and Isaac have recently found out that if they shut the door to their bedroom, they have privacy. They love this. I'll go and open the door to peek in and check in on them and they both bolt towards the door and slam the door in my face and then I hear them both giggling. Its actually quite cute, however, they also get into some mischief sometimes. One thing they do often is emptying the dressers out or how about throwing their whole stack of a case of 82 diapers on the floor, and most recently Caleb found out how to get ontop of his dresser. YIKES!!! I couldn't help but run for my camera (while another adult supervised him on the dresser) and get some priceless photos of this event.
Sometimes parents of children with Down Syndrome celebrate the craziest things. I was nervous that he would not be able to get down and of course worst case fall and get hurt. But more than anything I was SOOO PROUD of him for using his gross motor skills to pull his weight up on this dresser. I truly was impressed, nervous, but impressed.
Here is how I found him:
Then I asked him how he thought he would get down. He thought about it,...
then..
He quickly realized that this was not going to work, so back he got back up ontop...
and thought and yelled at me...
then he thought he would try the side approach towards the bed... humm sounds good...
After this photo, mom jumped to the rescue, but this photo is priceless!!!!!
Sometimes parents of children with Down Syndrome celebrate the craziest things. I was nervous that he would not be able to get down and of course worst case fall and get hurt. But more than anything I was SOOO PROUD of him for using his gross motor skills to pull his weight up on this dresser. I truly was impressed, nervous, but impressed.
Here is how I found him:
Then I asked him how he thought he would get down. He thought about it,...
then..
He quickly realized that this was not going to work, so back he got back up ontop...
and thought and yelled at me...
then he thought he would try the side approach towards the bed... humm sounds good...
After this photo, mom jumped to the rescue, but this photo is priceless!!!!!
Friday, October 30, 2009
31 for 21 Day 30.... Goals
Having children with Down Syndrome has created a whole new vocabulary for me. Words like IFSP, Transitions, Goals, IEP's, Interventions, Therapies, Developmental Delays, Non-verbal, Sign Language, Sensory Integration Dysfunction, GERD, Asthma, Tracheaomalasia, Subglottic Stenosis, Thickened Liquids due to Aspiration, Cookie Swallows, Stimulation... oh I could get carried away and just keep on typing words that pop into my head that have been new words for us over the past four years.
I want to focus today on Goals. Now four years into this whole parenting a child with a disability I am just now realizing how important it is to set goals. I know the service providers have been doing this since the boys were infants, but I think I am just getting the importance of it all. Without goals we wouldn't have something to word towards. We would just get lost in the shuffle of everyday life and may or may not learn a new ability. I know, I know this took longer for me to grasp than most.
It was something that is happening in my life right now that made me realize the importance of setting goals and ultimately made me appreciate even more what my boys have gotten up until this point and how much more I will stress goals in the future with them. My UH HUH moment was when I set a weight loss goal for myself this month. What I had to do to reach that goal was not just do the same ole same ole everyday, I had to change things, tweek this and tweek that, go beyond what I would normally do each day with meals and fitness.
I set the goal to lose 10 lbs this month. I have been recording my calories, I started walking 2.5 miles a day and when that no longer seemed a challenge for me I began a Couch to 5K program and I am actually JOGGING now. I have never jogged in my life for fun that is :) I stayed focused, I kept my goal in front of me and I accepted the challenge to change. It has paid off and I lost 12 pounds this month. I am so excited and ready to dive into the next month and see where that brings me.
I think that the goals I have set for my boys have been good to this point, but I think they're ready for more. I think we need to challenge them more and help them become even more independent than they've already become. I look forward to setting more goals for my life and for my children's lives. I think I may even take this to a new level, setting goals for my marriage, for my Christian walk, for my house keeping... WOW!! I better get a big piece of paper and lots of gold stars to stick up when I reach a goal.
Who woulda thunk it!
I want to focus today on Goals. Now four years into this whole parenting a child with a disability I am just now realizing how important it is to set goals. I know the service providers have been doing this since the boys were infants, but I think I am just getting the importance of it all. Without goals we wouldn't have something to word towards. We would just get lost in the shuffle of everyday life and may or may not learn a new ability. I know, I know this took longer for me to grasp than most.
It was something that is happening in my life right now that made me realize the importance of setting goals and ultimately made me appreciate even more what my boys have gotten up until this point and how much more I will stress goals in the future with them. My UH HUH moment was when I set a weight loss goal for myself this month. What I had to do to reach that goal was not just do the same ole same ole everyday, I had to change things, tweek this and tweek that, go beyond what I would normally do each day with meals and fitness.
I set the goal to lose 10 lbs this month. I have been recording my calories, I started walking 2.5 miles a day and when that no longer seemed a challenge for me I began a Couch to 5K program and I am actually JOGGING now. I have never jogged in my life for fun that is :) I stayed focused, I kept my goal in front of me and I accepted the challenge to change. It has paid off and I lost 12 pounds this month. I am so excited and ready to dive into the next month and see where that brings me.
I think that the goals I have set for my boys have been good to this point, but I think they're ready for more. I think we need to challenge them more and help them become even more independent than they've already become. I look forward to setting more goals for my life and for my children's lives. I think I may even take this to a new level, setting goals for my marriage, for my Christian walk, for my house keeping... WOW!! I better get a big piece of paper and lots of gold stars to stick up when I reach a goal.
Who woulda thunk it!
Monday, October 26, 2009
31 for 21 Day 26,,, God Opens Doors
I'm asking for help so read all of this please...
About a year or so ago, I was searching high and low for some kind of support group in my area to attend for parents with children with Down Syndrome. I live in a small rural area and I had no such luck.
I have gotten so much WONDERFUL support online and so much advice and encouragement from people that I most likely will never ever meet. But I was still looking for physical bodies to talk with and share our families ups and downs and spend time with doing things with our kids together, and found nothing.
I read so many stories online of other people's experiences with support groups and I decided that I was going to figure out a way to get a local support group going in my town. I know there are not alot of children with Down Syndrome that I know and with the whole HIPPA rules I was having a hard time finding any other people in this area who might be interested in joining my future group. I still continued on and read up on organizing and planning events, how to fund raise, how to advertise, how to start with little or NO money, and much much more. One of the last things I had on my TO DO LIST was to contact our local Arc Branch. If your not familiar with the Arc its an organization that provides services and advocacy for children and adults with Intellectual Disabilities all throughout the United States. You can read about The Arc of the US here, and The Arc of PA here, and my local branch, The Arc of Jefferson County here.
When I contacted the Arc they said that what I was planning on doing was something they would like to get going in this area as well, they just couldn't find anyone to do it. I was asked to consider coming in and doing this with The Arc. Without understanding exactly what they did or who they were I declined because I didn't know anything about other disabilities, and I didn't really want to learn everything about them all either. It was all I could do to understand Down Syndrome. After some thought and prayer I realized that the challenges, the activities, the opportunities, or the lack of each of these things mentioned would be the same for all individuals and families dealing with a disability. I felt that God was opening a door for me that would provide me with the ability to get a support group off the ground much faster as I would have a facility to host the meeting, funding since they are a 501c non-profit group, they have an established client list already, and I have an "in" to finding and reaching out to other families who have a child or adult with disabilities. I took the position of Executive Director back in May of this year and haven't looked back since.
GREAT!! This was going to be a cinch. I would get a big group together, we'd have speakers, we'd have parties, we'd have informational discussions, we'd find an advocate to discuss IEP's, we'd do this and do that. The group would not only be for parents of children with Down Syndrome, but for anyone struggling with anything dealing with special needs. Sounds simple.
But now 5 months in, we truly don't have the participation that I expected. We have about four of us that have committed ourselves to this and attend monthly. I can't figure it out, seriously. Am I the only person who feels the need for a group like this?? Am I the only person who will make time for something like this?? Am I the only person who doesn't feel inconvenienced to find a babysitter for something like this?? Am I the only person who wants something in place for new parents as well as seasoned parents to come together and share our experiences? I don't understand.
I'm reaching out again to my "Cyber Support Group". How often do your groups meet? Do you bring your children with you? Siblings? Spouses? What type of activities do you do? Any advice would greatly be appreciated. I am not giving up by any means and I know it takes a year to get things like this established, but like I said already have so many things on my side and such potential to get the ball rolling, I'm just at a point that I don't know what else to do right now but to start physically dragging the parents to the meetings. Maybe a bribe?? LOL
HELP ME!!!!
About a year or so ago, I was searching high and low for some kind of support group in my area to attend for parents with children with Down Syndrome. I live in a small rural area and I had no such luck.
I have gotten so much WONDERFUL support online and so much advice and encouragement from people that I most likely will never ever meet. But I was still looking for physical bodies to talk with and share our families ups and downs and spend time with doing things with our kids together, and found nothing.
I read so many stories online of other people's experiences with support groups and I decided that I was going to figure out a way to get a local support group going in my town. I know there are not alot of children with Down Syndrome that I know and with the whole HIPPA rules I was having a hard time finding any other people in this area who might be interested in joining my future group. I still continued on and read up on organizing and planning events, how to fund raise, how to advertise, how to start with little or NO money, and much much more. One of the last things I had on my TO DO LIST was to contact our local Arc Branch. If your not familiar with the Arc its an organization that provides services and advocacy for children and adults with Intellectual Disabilities all throughout the United States. You can read about The Arc of the US here, and The Arc of PA here, and my local branch, The Arc of Jefferson County here.
When I contacted the Arc they said that what I was planning on doing was something they would like to get going in this area as well, they just couldn't find anyone to do it. I was asked to consider coming in and doing this with The Arc. Without understanding exactly what they did or who they were I declined because I didn't know anything about other disabilities, and I didn't really want to learn everything about them all either. It was all I could do to understand Down Syndrome. After some thought and prayer I realized that the challenges, the activities, the opportunities, or the lack of each of these things mentioned would be the same for all individuals and families dealing with a disability. I felt that God was opening a door for me that would provide me with the ability to get a support group off the ground much faster as I would have a facility to host the meeting, funding since they are a 501c non-profit group, they have an established client list already, and I have an "in" to finding and reaching out to other families who have a child or adult with disabilities. I took the position of Executive Director back in May of this year and haven't looked back since.
GREAT!! This was going to be a cinch. I would get a big group together, we'd have speakers, we'd have parties, we'd have informational discussions, we'd find an advocate to discuss IEP's, we'd do this and do that. The group would not only be for parents of children with Down Syndrome, but for anyone struggling with anything dealing with special needs. Sounds simple.
But now 5 months in, we truly don't have the participation that I expected. We have about four of us that have committed ourselves to this and attend monthly. I can't figure it out, seriously. Am I the only person who feels the need for a group like this?? Am I the only person who will make time for something like this?? Am I the only person who doesn't feel inconvenienced to find a babysitter for something like this?? Am I the only person who wants something in place for new parents as well as seasoned parents to come together and share our experiences? I don't understand.
I'm reaching out again to my "Cyber Support Group". How often do your groups meet? Do you bring your children with you? Siblings? Spouses? What type of activities do you do? Any advice would greatly be appreciated. I am not giving up by any means and I know it takes a year to get things like this established, but like I said already have so many things on my side and such potential to get the ball rolling, I'm just at a point that I don't know what else to do right now but to start physically dragging the parents to the meetings. Maybe a bribe?? LOL
HELP ME!!!!
Monday, October 19, 2009
31 for 21 Day 19... Therapies
There are many things I never experienced before having identical twins both with a diagnosis of Down Syndrome. But the one I'm going to blog about today is therapies.
When the twins came home they began Early Intervention therapy at about four months of age. The first type of therapy they began was Physical Therapy. At four months of age the therapist came into our home and did little leg exercises with the boys. As they got stronger they worked on holding their head up, then rolling and sitting, then getting up on hands and knees and then into standing positions. This was alot of work for the boys and one thing that this made me realize is that we totally take our typical healthy children for granted at how naturally things just come to them. To explain this, its just a natural progression for children to lift their head, then learn to roll, then get up on their hands and knees..rock back and forth and then start crawling and so on. With my boys they literally had to be taught how to do each one of these steps. Its amazing how hard my guys worked to get where they are today.
Then Occupational Therapy started. They stared with play therapy. They would learn to push buttons on toys to make the lights and music go off. Then they would pull things, put rings on a post. Now that one was one that literally took us months to master. I'm pretty sure it took both boys about three months to be able to put four rings on a post. It was quite a challenge for them. Now we put shapes into a shape sorter, we're starting to work on pre-writing skills. They also put weighted vests on them for sensory input and this helps them focus on getting their work done. Here are a few recent photos from outpatient OT.
Isaac on the swing:
Building a tower:
Now stacking the squares back together:
After OT came Speech Therapy. The major surprise with this therapy was that the therapist(s) are not trained in sign language. All they do with the boys is try to get them to vocalize and make sounds. After trying this for three years now, I would think they would offer another suggestion. Now some of them do know basic sign and they incorporate this into the therapy session, but I'm still amazed that signing is not "part of their job". The twins truly enjoy speech therapy. Its alot of puzzles, reading books, signing songs, and playing with balls and cars trying to get them to make any noise we can.
Here is speech therapy putting puzzles together:
Here is TSS signing them a story:
Then the boys both had a VitalStim therapy for about a year. This was an electrical stimulation to their neck area to help strengthen their swallowing.
Notice the electrodes on their neck and the little gray machine behind Isaac, that was the volume controller. They would turn the intensity up if the boys would tolerate it. They were to eat and/or drink during this 45 minute session each week.
Now they also have TSS services due to their Autism diagnosis and I have to say that by far these girls are the best thing that's happened to me and my boys. They basically take each therapy that the boys are given and replicate it all week long. Each boy has 18 hours a week with their TSS and they behave better for them than they do me...LOL
Now that the boys are three they attend a preschool provided by the school district to prepare them for kindergarten AND they attend another preschool for children with Autism called Stepping Stones. So between the two preschools they have a four day week of schooling and TSS's at home three days a week.
So the boys are very stimulated and very intensely educated. I am very happy with where they are right now and it amazes me to see their wheels a turnin and thinking about what they've been asked to think about and doing what they've been asked to do. I am so proud of them. I am so happy with our journey so far with them and anxious to see where this journey takes us. God is so good and I am so honored to have been blessed with these boys.
When the twins came home they began Early Intervention therapy at about four months of age. The first type of therapy they began was Physical Therapy. At four months of age the therapist came into our home and did little leg exercises with the boys. As they got stronger they worked on holding their head up, then rolling and sitting, then getting up on hands and knees and then into standing positions. This was alot of work for the boys and one thing that this made me realize is that we totally take our typical healthy children for granted at how naturally things just come to them. To explain this, its just a natural progression for children to lift their head, then learn to roll, then get up on their hands and knees..rock back and forth and then start crawling and so on. With my boys they literally had to be taught how to do each one of these steps. Its amazing how hard my guys worked to get where they are today.
Then Occupational Therapy started. They stared with play therapy. They would learn to push buttons on toys to make the lights and music go off. Then they would pull things, put rings on a post. Now that one was one that literally took us months to master. I'm pretty sure it took both boys about three months to be able to put four rings on a post. It was quite a challenge for them. Now we put shapes into a shape sorter, we're starting to work on pre-writing skills. They also put weighted vests on them for sensory input and this helps them focus on getting their work done. Here are a few recent photos from outpatient OT.
Isaac on the swing:
Building a tower:
Now stacking the squares back together:
After OT came Speech Therapy. The major surprise with this therapy was that the therapist(s) are not trained in sign language. All they do with the boys is try to get them to vocalize and make sounds. After trying this for three years now, I would think they would offer another suggestion. Now some of them do know basic sign and they incorporate this into the therapy session, but I'm still amazed that signing is not "part of their job". The twins truly enjoy speech therapy. Its alot of puzzles, reading books, signing songs, and playing with balls and cars trying to get them to make any noise we can.
Here is speech therapy putting puzzles together:
Here is TSS signing them a story:
Then the boys both had a VitalStim therapy for about a year. This was an electrical stimulation to their neck area to help strengthen their swallowing.
Notice the electrodes on their neck and the little gray machine behind Isaac, that was the volume controller. They would turn the intensity up if the boys would tolerate it. They were to eat and/or drink during this 45 minute session each week.
Now they also have TSS services due to their Autism diagnosis and I have to say that by far these girls are the best thing that's happened to me and my boys. They basically take each therapy that the boys are given and replicate it all week long. Each boy has 18 hours a week with their TSS and they behave better for them than they do me...LOL
Now that the boys are three they attend a preschool provided by the school district to prepare them for kindergarten AND they attend another preschool for children with Autism called Stepping Stones. So between the two preschools they have a four day week of schooling and TSS's at home three days a week.
So the boys are very stimulated and very intensely educated. I am very happy with where they are right now and it amazes me to see their wheels a turnin and thinking about what they've been asked to think about and doing what they've been asked to do. I am so proud of them. I am so happy with our journey so far with them and anxious to see where this journey takes us. God is so good and I am so honored to have been blessed with these boys.
Friday, October 2, 2009
31 for 21: Day Two "The Diagnosis"
I'm going to start my Down Syndrome Awareness blog by telling how we got the diagnosis and how I feel it should have been handled differently.
When any parent has a child they are so very excited about everything. We always hope for a healthy baby, for a safe delivery, and to live happily ever after. When I found out I was pregnant with twins, the excitement was doubled. I was so surprised, I NEVER thought I would have twins. That was just one of those things you see other people do or watch on a Baby Story and feel for those parents...LOL After the initial shock Tom and I were very excited.
I had a long complicated pregnancy. I had several ultrasounds done, including three Level 2 sonograms to make sure everything was ok with the babies. In one instance the perinatologist spent 10 to 15 minutes just trying to measure baby B's pinky and make sure it was straight. Boys looked good. Hearts were healthy, all organs looked great except baby B had one kidney dilated but that was nothing to worry about it should fix itself before he was even born. After finally getting the pinky measurement the words "There's no indication of Down Syndrome in either boy, they're healthy". Great!! One Less worry, now let's just get through this pregnancy.
My due date was December 15th. On October 13th a very good friend of my family died. My mom was going to keep the news from me in fear that it would upset me to badly, but I found out and I was really sad all night long. Woke up October 14th to a trickle going down my leg..uh oh. Off to hospital to see what it is. Ended up not being amniotic fluid but I was having contractions very steadily so they kept me. The next day doctors attempted to get them to stop and did not succeed, the next day they put me on magnesium sulfate....UGH, but it worked. October 17th, I was feeling well, contractions have just about stopped completely I was ready to go home. I ordered my lunch and was sitting with my sister and niece in my room and we were talking about me going home. It was a good day!
THEN, the Charge Nurse came running into my room as the lunch lady was delivering my lunch to me and told me not to take a single bite of that food!!! WHAT?? The sonogram that I had just had that morning showed that Baby B was in distress and they got poor readings for everything they were checking for so I was off to an emergency c-section.
Terrible c-secton, won't go into details, but they put me to sleep.
Fast forward 10 days. I was in the NICU with the boys sitting with my sister in law Megan. We were chatting about how tiny and cute they twins were. Caleb (Baby A) was 3lbs 3oz and Isaac (Baby B) was 2lbs 10oz, both were 15 1/2 inches long. The pediatrician came over to our pod and said he had the test results back on Caleb. Test Results? WHAT TEST RESULTS? "I'm sorry to inform you that your child has Down Syndrome." "At this time we cannot tell you how he may function in life or what other conditions he may have. We have several brochures for you to read and I'll have the nurses put something together for you. Do you have any questions for me?"
UM, no!! Can't you see the shock on my face, let me get a few breaths of air into my body so my brain can even function. Ok..Ok So Caleb has Down Syndrome. Does Isaac? "Well we don't know that yet. Because Isaac is so small the test requires so much blood we've decided to wait until the results of the placenta come back to determine if they are identical or fraternal. If they are identical they will both have it but we've never seen a case like that before so more than likely Isaac does not have it."
To back up the story and explain. When I had to have the emergency c-section it was due to Baby B, Isaac, not reading well on the sonogram. When he was born he had severe head trauma from being shoved up into my ribs. He literally had a heart shaped head coming out with the imprint of my ribs going from the top back of his head down to his chin. Due to this they did not suspect any Down Syndrome in the delivery room, just head trauma. Caleb however, they noticed some features of Down Syndrome and asked my husband if they could run some tests on him. At the time I was still heavily sedated and didn't hear any of the conversation. My darling husband, who was only trying to protect me, decided not to tell me this information because I had been through hell that week and then a terrible delivery. I do seriously thank him for that as I would have just worried for that first 10 days instead of enjoying them.
When we received the official word that Caleb had Down Syndrome we were not upset so much with the Down Syndrome, we were just nervous that we would not know how to do this and hoping that we could be the kind of parents that he would need to tend to his special needs. Neither Tom nor I had any experience or knowledge about Down Syndrome and it was scary. While we waited on the diagnosis for Isaac we kept discussing, what if's. What if they both have it? What if one does and one does not? Which way would we prefer it? How much did God think we could handle? How long did we have to wait? It was driving us crazy quite frankly.
Oct. 31st. Closed on our house...YUP!! We were buying a house and wanted to get it ready for our twins arrival in December and instead the twins came first and then the house right after they arrived. We went Trick Or Treating with older three kids and enjoyed our day bragging to everyone about our sweet little babies in the NICU.
November 1st. Twins seemed a little different today? Not eating well and having alot episodes of them not breathing? I went home knowing they were in the best care just to see the other children and have dinner with my family. I pumped and went in for my evening visit to deliver milk at 10pm and was met by a dear friend, Tina, who happened to be our NICU nurse. She said Isaac was having some trouble and they had called the life flight to ship him to Pittsburgh Children's....
November 2nd. Isaac and Caleb had both developed N.E.C. Because Isaac was the smaller of the twins he could not fight off the infection in his small bowels and had to have an operation. During this operation they drew blood to test for Down Syndrome and as they broke the news to us about his condition, they also said they were pretty sure he had Down Syndrome.
This was ALOT to take in, but we grew stronger in our faith in God, our love for our family and friends for their help and prayers, and we learned more than anything that we have no control in this life and to feel blessed for every day we're given.
Note to Doctors and Nurses:
I just wished that how we were given the news would have been done with more respect to us as parents, for the road we were about to travel, more respect for my children who may have a more difficult road but darnit they were both beautiful infant boys who needed the same attention and love as my other children did at the beginning, and more respect for the disability in general. Its not a bad thing that you have to be Sorry about. Instead Congratulate the new parents, tell them that you know several others who have done great things with their children and there are so many opportunities out there now that weren't here 20 years ago, Give HOPE instead of SORROW when you give a diagnosis. I can tell you from experience, I have been Doubly BLESSED and I would not want this any other way even if I could choose it myself now.
When any parent has a child they are so very excited about everything. We always hope for a healthy baby, for a safe delivery, and to live happily ever after. When I found out I was pregnant with twins, the excitement was doubled. I was so surprised, I NEVER thought I would have twins. That was just one of those things you see other people do or watch on a Baby Story and feel for those parents...LOL After the initial shock Tom and I were very excited.
I had a long complicated pregnancy. I had several ultrasounds done, including three Level 2 sonograms to make sure everything was ok with the babies. In one instance the perinatologist spent 10 to 15 minutes just trying to measure baby B's pinky and make sure it was straight. Boys looked good. Hearts were healthy, all organs looked great except baby B had one kidney dilated but that was nothing to worry about it should fix itself before he was even born. After finally getting the pinky measurement the words "There's no indication of Down Syndrome in either boy, they're healthy". Great!! One Less worry, now let's just get through this pregnancy.
My due date was December 15th. On October 13th a very good friend of my family died. My mom was going to keep the news from me in fear that it would upset me to badly, but I found out and I was really sad all night long. Woke up October 14th to a trickle going down my leg..uh oh. Off to hospital to see what it is. Ended up not being amniotic fluid but I was having contractions very steadily so they kept me. The next day doctors attempted to get them to stop and did not succeed, the next day they put me on magnesium sulfate....UGH, but it worked. October 17th, I was feeling well, contractions have just about stopped completely I was ready to go home. I ordered my lunch and was sitting with my sister and niece in my room and we were talking about me going home. It was a good day!
THEN, the Charge Nurse came running into my room as the lunch lady was delivering my lunch to me and told me not to take a single bite of that food!!! WHAT?? The sonogram that I had just had that morning showed that Baby B was in distress and they got poor readings for everything they were checking for so I was off to an emergency c-section.
Terrible c-secton, won't go into details, but they put me to sleep.
Fast forward 10 days. I was in the NICU with the boys sitting with my sister in law Megan. We were chatting about how tiny and cute they twins were. Caleb (Baby A) was 3lbs 3oz and Isaac (Baby B) was 2lbs 10oz, both were 15 1/2 inches long. The pediatrician came over to our pod and said he had the test results back on Caleb. Test Results? WHAT TEST RESULTS? "I'm sorry to inform you that your child has Down Syndrome." "At this time we cannot tell you how he may function in life or what other conditions he may have. We have several brochures for you to read and I'll have the nurses put something together for you. Do you have any questions for me?"
UM, no!! Can't you see the shock on my face, let me get a few breaths of air into my body so my brain can even function. Ok..Ok So Caleb has Down Syndrome. Does Isaac? "Well we don't know that yet. Because Isaac is so small the test requires so much blood we've decided to wait until the results of the placenta come back to determine if they are identical or fraternal. If they are identical they will both have it but we've never seen a case like that before so more than likely Isaac does not have it."
To back up the story and explain. When I had to have the emergency c-section it was due to Baby B, Isaac, not reading well on the sonogram. When he was born he had severe head trauma from being shoved up into my ribs. He literally had a heart shaped head coming out with the imprint of my ribs going from the top back of his head down to his chin. Due to this they did not suspect any Down Syndrome in the delivery room, just head trauma. Caleb however, they noticed some features of Down Syndrome and asked my husband if they could run some tests on him. At the time I was still heavily sedated and didn't hear any of the conversation. My darling husband, who was only trying to protect me, decided not to tell me this information because I had been through hell that week and then a terrible delivery. I do seriously thank him for that as I would have just worried for that first 10 days instead of enjoying them.
When we received the official word that Caleb had Down Syndrome we were not upset so much with the Down Syndrome, we were just nervous that we would not know how to do this and hoping that we could be the kind of parents that he would need to tend to his special needs. Neither Tom nor I had any experience or knowledge about Down Syndrome and it was scary. While we waited on the diagnosis for Isaac we kept discussing, what if's. What if they both have it? What if one does and one does not? Which way would we prefer it? How much did God think we could handle? How long did we have to wait? It was driving us crazy quite frankly.
Oct. 31st. Closed on our house...YUP!! We were buying a house and wanted to get it ready for our twins arrival in December and instead the twins came first and then the house right after they arrived. We went Trick Or Treating with older three kids and enjoyed our day bragging to everyone about our sweet little babies in the NICU.
November 1st. Twins seemed a little different today? Not eating well and having alot episodes of them not breathing? I went home knowing they were in the best care just to see the other children and have dinner with my family. I pumped and went in for my evening visit to deliver milk at 10pm and was met by a dear friend, Tina, who happened to be our NICU nurse. She said Isaac was having some trouble and they had called the life flight to ship him to Pittsburgh Children's....
November 2nd. Isaac and Caleb had both developed N.E.C. Because Isaac was the smaller of the twins he could not fight off the infection in his small bowels and had to have an operation. During this operation they drew blood to test for Down Syndrome and as they broke the news to us about his condition, they also said they were pretty sure he had Down Syndrome.
This was ALOT to take in, but we grew stronger in our faith in God, our love for our family and friends for their help and prayers, and we learned more than anything that we have no control in this life and to feel blessed for every day we're given.
Note to Doctors and Nurses:
I just wished that how we were given the news would have been done with more respect to us as parents, for the road we were about to travel, more respect for my children who may have a more difficult road but darnit they were both beautiful infant boys who needed the same attention and love as my other children did at the beginning, and more respect for the disability in general. Its not a bad thing that you have to be Sorry about. Instead Congratulate the new parents, tell them that you know several others who have done great things with their children and there are so many opportunities out there now that weren't here 20 years ago, Give HOPE instead of SORROW when you give a diagnosis. I can tell you from experience, I have been Doubly BLESSED and I would not want this any other way even if I could choose it myself now.
Tuesday, September 1, 2009
Our LiL Celebrities and the first day of school
Today is such a memory packed day for us all.
First of all, its the first day of school for the older kids. My sweet sweet Tristin is going to middle school now. Oh how the years have gone by and I couldn't be prouder of her. She is so ready to take this big step and I am excited to see what this year brings her. I keep telling her that she is at such a hard step in her life right now, she wants to do things...like have a cell phone..or walk the mall with a friend...or go off by herself at a fair, yet I want her to stay a kid for just a wee bit longer. If she can bear with me through the next year or so she will be allowed to grow her wings and start to fly. This protective mama bear is still keeping those wings clipped for a little while longer. She is a beautiful person inside and out, and I'm so happy to be her mom.
Camille is going into the second grade. I love the elementary school my kids attend as its a multi-aged classroom. Kindergarten and 1st grade are together, 2nd and 3rd are together, and 4th and 5th are together. This is great because you get to keep your teacher for two years and not only is it comforting for the kids to know who their teacher is when they go back, but the teachers also get to know eachs child's personality and can work with them for two years. As long as the student and teacher get along...its a great thing. Camille is going to a new teacher, Mrs. Sayers and she's really excited because one of her good friends from K-1 now followed her to 2-3 so Izzy and Camille will remain "school sisters" for another two years. I hope that Camille has a great year and she connects with this teacher as she did with the past teacher.
Elijah....oh my Elijah. He's probably the most excited to go back to school. He loves the structure of it all. He's very intelligent and I was surprised at how much he calmed down after going to Kindergarten for just a few weeks. I know he'll do great and I'm excited for him too. A tradition of mine is to make the kids hold signs on the first day of what grade their going into that way when I look at them years down the road I don't have to calculate what year equaled what grade. Tom thinks its silly, I think its genius!!
And Second, a few weeks back I was contacted by the local chapter of The American Red Cross. They are getting ready to launch a new campaign and was looking at past blood recipients to use as models for advertising. They said we had a very encouraging story with Isaac and asked if we would consider allowing them to photograph him and use his story. I was honored and excited about this. We set up the photo shoot for today and I was nervous myself because we were told last week that they intended to make a video clip to share on their website, use some of us in a tv commercial, use our voices in radio advertising, and the photos will be used for various advertising things. WoW! I was a little nervous this morning as both boys were snotty nosed and fussy, but boy when we got there their moods changed. And for the BETTER YaY!!! They were all smiles and they were plesant and we really enjoyed our time there. It took about an hour to do everything. We all sported American Red Cross shirts, they gave us lines to say for the commercial and for the radio and took tons and tons of photos. It really was fun! I'm excited to see the end product and truly thankful for them choosing us so that we can show everyone our beautiful twins and let them know what a blessing they are to us.
First of all, its the first day of school for the older kids. My sweet sweet Tristin is going to middle school now. Oh how the years have gone by and I couldn't be prouder of her. She is so ready to take this big step and I am excited to see what this year brings her. I keep telling her that she is at such a hard step in her life right now, she wants to do things...like have a cell phone..or walk the mall with a friend...or go off by herself at a fair, yet I want her to stay a kid for just a wee bit longer. If she can bear with me through the next year or so she will be allowed to grow her wings and start to fly. This protective mama bear is still keeping those wings clipped for a little while longer. She is a beautiful person inside and out, and I'm so happy to be her mom.
Camille is going into the second grade. I love the elementary school my kids attend as its a multi-aged classroom. Kindergarten and 1st grade are together, 2nd and 3rd are together, and 4th and 5th are together. This is great because you get to keep your teacher for two years and not only is it comforting for the kids to know who their teacher is when they go back, but the teachers also get to know eachs child's personality and can work with them for two years. As long as the student and teacher get along...its a great thing. Camille is going to a new teacher, Mrs. Sayers and she's really excited because one of her good friends from K-1 now followed her to 2-3 so Izzy and Camille will remain "school sisters" for another two years. I hope that Camille has a great year and she connects with this teacher as she did with the past teacher.
Elijah....oh my Elijah. He's probably the most excited to go back to school. He loves the structure of it all. He's very intelligent and I was surprised at how much he calmed down after going to Kindergarten for just a few weeks. I know he'll do great and I'm excited for him too. A tradition of mine is to make the kids hold signs on the first day of what grade their going into that way when I look at them years down the road I don't have to calculate what year equaled what grade. Tom thinks its silly, I think its genius!!
And Second, a few weeks back I was contacted by the local chapter of The American Red Cross. They are getting ready to launch a new campaign and was looking at past blood recipients to use as models for advertising. They said we had a very encouraging story with Isaac and asked if we would consider allowing them to photograph him and use his story. I was honored and excited about this. We set up the photo shoot for today and I was nervous myself because we were told last week that they intended to make a video clip to share on their website, use some of us in a tv commercial, use our voices in radio advertising, and the photos will be used for various advertising things. WoW! I was a little nervous this morning as both boys were snotty nosed and fussy, but boy when we got there their moods changed. And for the BETTER YaY!!! They were all smiles and they were plesant and we really enjoyed our time there. It took about an hour to do everything. We all sported American Red Cross shirts, they gave us lines to say for the commercial and for the radio and took tons and tons of photos. It really was fun! I'm excited to see the end product and truly thankful for them choosing us so that we can show everyone our beautiful twins and let them know what a blessing they are to us.
Wednesday, August 26, 2009
You Tube Video of twins with Down Syndrome
A fellow blogger friend Maggie from Take a Walk on the Happy Side: Down Syndrome Awareness, had a reply to one of her recent posts that was very interesting to me and I wanted to share it with anyone else who may be interested. Maggie is one of the few people I have found online who also has identical twins both with Down Syndrome. If you are a reader of my blog and you know of any other people out there that have twins both with Down Syndrome and you could share their blog with me please do, we are so very rare, and its encouraging to find others who may be traveling the same path.
Friday, August 7, 2009
Ties that Bind, Connections in the Down Syndrome Community
I have used the internet for more that 12 years now. I used it before my first daughter was born, probably more after my second daughter came along, and then probably alot less after my son Elijah came around. Three children kept me busy enough I didn't get on but a few times a week if that.
THEN my twins came. I can honestly say that I am on the computer several times each and every day. First it was for research. Researching twins, then prematurity, then Down Syndrome, then PDD Autism, and certain therapies, and many..many..many other things that go along with life with twins with Down Syndrome. The best part of all of this is the connections I have made online with several families who have been blessed with children with Down Syndrome as we have. I have found families with identical twins with DS, I have found families who have adopted multipul children with Down Syndrome, I have found families dealing with health issues as we have, I have found families who share what works for them in a specfic situation, I have found more love and support from others all over the world via the wonderful thing we call the internet. I have found my second family online. I say its sometimes sad that I have to find resources and support from people hundreds or thousands of miles away from me, let alone from people I may never meet face to face EVER. Yet we still have the common connection that makes us treat each other with respect and love through our cyber chat rooms.
A great project one mom put together is called the T21 Traveling Afghan Project. Its a great idea and I enjoy following this project as it goes one. Here is a bit of information about them taken from their blog:
There is a very special blanket making it's way from one family to another all over the world.
The common tie? Down syndrome.
Each family who receives the afghan for one week has a member with T21.
They get the blanket, take photos with their family and pass the blanket (and an accompaning journal) on to the next recipient.
One blanket. Fifty US states. Many countries. Hundreds of families. One common thread!
If you have never heard of this project, I'd encourage you to check out the stories, see the happy faces, and share in the excitment of a small afghan that will bring joy to so many families knowing that we are all in this together, no matter where we live, no matter what our race or gender, how much money we make, what our beliefs or outlook on life is, we all are bonded by Down Syndrome. It's simply a true blessing from God above. (In my case, I've been doubly blessed!!) Those who aren't here sometimes just don't understand.....
THEN my twins came. I can honestly say that I am on the computer several times each and every day. First it was for research. Researching twins, then prematurity, then Down Syndrome, then PDD Autism, and certain therapies, and many..many..many other things that go along with life with twins with Down Syndrome. The best part of all of this is the connections I have made online with several families who have been blessed with children with Down Syndrome as we have. I have found families with identical twins with DS, I have found families who have adopted multipul children with Down Syndrome, I have found families dealing with health issues as we have, I have found families who share what works for them in a specfic situation, I have found more love and support from others all over the world via the wonderful thing we call the internet. I have found my second family online. I say its sometimes sad that I have to find resources and support from people hundreds or thousands of miles away from me, let alone from people I may never meet face to face EVER. Yet we still have the common connection that makes us treat each other with respect and love through our cyber chat rooms.
A great project one mom put together is called the T21 Traveling Afghan Project. Its a great idea and I enjoy following this project as it goes one. Here is a bit of information about them taken from their blog:
There is a very special blanket making it's way from one family to another all over the world.
The common tie? Down syndrome.
Each family who receives the afghan for one week has a member with T21.
They get the blanket, take photos with their family and pass the blanket (and an accompaning journal) on to the next recipient.
One blanket. Fifty US states. Many countries. Hundreds of families. One common thread!
If you have never heard of this project, I'd encourage you to check out the stories, see the happy faces, and share in the excitment of a small afghan that will bring joy to so many families knowing that we are all in this together, no matter where we live, no matter what our race or gender, how much money we make, what our beliefs or outlook on life is, we all are bonded by Down Syndrome. It's simply a true blessing from God above. (In my case, I've been doubly blessed!!) Those who aren't here sometimes just don't understand.....
Monday, July 27, 2009
Specs4Us
We finally got around to getting some of these great frames for the boys. This is a wonderful line of glasses made especially for little faces of children with Down Syndrome. You wouldn't even believe how hard it is to find something to fit them. They have a wide bridge on their nose and most glasses just really dont fit. We have been through four pair of glasses already and none fit as well as these ones do.
Maria is the Founder/Owner of Specs4Us and she was really great to deal with. There wasn't an optician in my area that carried these frames so she mailed me samples to try on and even a return envelope with postage to send back the ones we did not want. She went out of her way to help and I so appreciate everything she did.
Here's our BEFORE shot of our other glasses that didn't work so well, but still looked cute on:
Here are a few photos of the boys I got today. It was a beautiful evening and we went out for a walk around the farm and got these cute pictures:
I know, I know AWWWWWWWWWWWWWWWWWWW
Maria is the Founder/Owner of Specs4Us and she was really great to deal with. There wasn't an optician in my area that carried these frames so she mailed me samples to try on and even a return envelope with postage to send back the ones we did not want. She went out of her way to help and I so appreciate everything she did.
Here's our BEFORE shot of our other glasses that didn't work so well, but still looked cute on:
Here are a few photos of the boys I got today. It was a beautiful evening and we went out for a walk around the farm and got these cute pictures:
I know, I know AWWWWWWWWWWWWWWWWWWW
Thursday, April 30, 2009
Day 7 and we're FINALLY home from hospital
Today, (Tuesday) we finally made our way home. We are on steroids and albuterol treatments three times a day for the next week but by golly we're home. Now its time for me to get the house back in order after a week away....ugh!!
Here's one last photo of Caleb rocking in the chair before we left
Glad to be home!!
Here's one last photo of Caleb rocking in the chair before we left
Glad to be home!!
Wednesday, April 29, 2009
Day 6... one down, one more to go
Tonight Isaac got to come home at 8:30pm. He had to be off the oxygen for 24 hours before he could be released and the doctor felt bad releasing one and not the other, but he had not reason to keep Isaac. So Tom took him home and let him sleep in his own bed and then brought him back in the next morning.
Here are some photos from day six:
Both boys IV's stopped working today so they were free to get out of the bed and put on their shoes and play on the floor for a bit. Here's Caleb reading the book "The Wheels on the Bus"
Here's Caleb asking to watch Blues Clues for the 30th time in a week:
Here's Isaac saying his good-byes to brother for the night, he has that look like YEAH I'm outta here:
Here's Isaac blowing kisses before they left:
Here are some photos from day six:
Both boys IV's stopped working today so they were free to get out of the bed and put on their shoes and play on the floor for a bit. Here's Caleb reading the book "The Wheels on the Bus"
Here's Caleb asking to watch Blues Clues for the 30th time in a week:
Here's Isaac saying his good-byes to brother for the night, he has that look like YEAH I'm outta here:
Here's Isaac blowing kisses before they left:
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