Monday, August 5, 2013

Its' been a Simple Blackberry Jam Kinda Day

I have been gone from blogging for quite some time now.  My days have been so busy, heck my life has been so busy.  About a month ago I really felt that God has put something so strongly on my heart that I could not deny it any longer.  He led me to a decision that I had been putting of for a few years but could not bring myself to do.  I resigned from a job that I truly loved working as the Executive Director of our local Arc chapter.  I enjoyed getting to know so many people and gaining a better understanding of the needs in our community for people with disabilities.

What I came to realize was that I had a very important need in my own household.  Raising five children and trying to keep it all together is not something that one can do lightly, I WAS NEEDED!!  I was needed to stay home and be the best mom and wife that I could possibly be.  And thus I begin the stay at home mom routine again.  The income loss will hurt but I have faith that God has a better plan for us and He will see us through.  Already I have had more time to tend to my garden and keep the weeds from overtaking everything like it usually does by this time of year.  Already I am working hard with the kiddos to simplify things in our home.  I have said several times, I don't know if I'm losing my mind or if I'm getting smarter, but we currently have NO FURNITURE in our living room... thats right!! We have a rickety ole glider rocker that I bought when I got pregnant with Tristin (16 years ago) and an Amish wooden rocker that is not the most comfortable to sit in for a long period of time.  So a rocker for mama and a rocker for dada.  The kids can sit on the floor....and they do!!  The kids had spilled things on the furniture, jumped on it until fabric was torn, the twins had pee'd on it a few times and the odor would not fade, the dog used it more than I did and I just plum got tired of having something like that in my house... so I paid someone to come and haul it away to burn.  Honestly, felt great!!!

We are downsizing the bazillion pieces of clothing that my children have, and don't take care of.  I will wash laundry only to have them throw it on their floor and declare it dirty again and end up back in the wash before its even worn... no more!  What does not end up in the dresser goes away in some fashion or another.

Yesterday my darling husband informed me that the blackberries were ripe and huge.  He spent about an hour or so pickin for me last night.

 I didn't want to see that beautiful harvest end up as just a snack so today I took some time and made some blackberry jam.  I have made strawberry jam, I have made blueberry jam, I have made peach jam, I have even made tomato jam, but never have I had a chance to make blackberry jam... I have to boast and let you know it turned out delicious!!! Can't wait to spread it out on pancakes or eat it ontop of ice cream and enjoy it for breakfast ontop of my toast.. YUM!!

So as I start my new journey of being a stay at home mom again, I see wonderful things in my future.  I see canning, I see baking, I see crafting, I see home improvements, I see landscaping.... BOY oh BOY I guess I really was needed right here ;)

Recipe for blackberry jam:

9 cups of fresh blackberries
5 cups of sugar
1 1/2 cups of apple juice
1 box pectin

mash blackberries, add apple juice and bring to a boil adding sugar slowly.  When boiling add package of pectin and boil until thickened.  HELPFUL HINT: I always take a spoonful out and set it on some ice cubes for a minute to see if its the thickness I desire when finished.  Ladle into jelly jars, top with sterilized lid and hot pack for 10 minutes.  This recipe makes about 9 jelly jars full, with a little extra to enjoy ASAP!!

Wednesday, July 24, 2013

Elijah hits double digits

10 Years!! 10 Years Old!!!  

My first born boy, Elijah, has hit double digits   His beautiful brown eyes still melt my heart every single day and his personality keeps me on my toes from day to day.  Some days he's a comedian, some days he's an inventor, some days he tries to see who he can irritate the most, some days he's a big ole snuggle bug.  Elijah has really grown this year and he sure loves to play baseball.  His birthday present is, of course, a ball game with dad and papa on Friday.  They are going to State College Spikes because 1. its a ball game and 2. Mountain Man from Duck Dynasty will be there and that's equally exciting for the guys ;)

Love Ya Buddy!!!  Enjoy #10 and looking forward to seeing what the next 10 years bring!!

Tuesday, April 2, 2013

Autism AND Down Syndrome.... Times TWO

Today, April 2nd, is World Autism Day.  Today is a day to spread awareness about Autism.  Today I think everyone has at least heard of Autism if not already has a family member dealing with Autism.  Today I want to share our story...

Our identical twin boys were born in October of 2007, both with Down Syndrome.  Our world as we knew it changed from that day on.  Tom and I have five children.  The first three children were born with perfect pregnancies and near perfect deliveries.  I had only one experience with a premature baby prior to the twins.  As I held my 4 pound nephew Nathan in the NICU on March 14, 2005 I remember thinking how tiny he was and I was so thankful he was ok coming as early as he did.  I NEVER thought I would hold a 2 pound 10 oz baby or a 3 pound 2 ounce baby a short two and a half years later and call them my sons.  The NICU experience was one of many many experiences we have dealt with since October of 2007.

The diagnosis of Down Syndrome consumed what time and energy I had left after caring for my children.  I become a sponge wanting to absorb more and more about this disability and the "expected" future for my boys.  I joined online groups, I read books, I read blogs, I reached out to the Down Syndrome Clinic at Children's Hospital in Pittsburgh, I sought after local support groups and/or families raising children with Down Syndrome.  I felt like this Down Syndrome thing was taking over my life, my thoughts, and my emotions.

Then came a day of complete and utter shock.  

I was really trying to figure this Down Syndrome thing out.. things were different with them compared to their older siblings.  Early Intervention, Therapies, lots and lots of doctors and hospital visits, evaluations, people in my house, I felt like I was the one under the microscope sometimes... The boys were 22 months old, they were doing some army crawling on the floor to get around,  they were still wobbly sitting up, they were not feeding themselves at all from the table, and they did alot of humming and stimming.  Humming and Stimming were new words I was getting to know but having a hard time understanding.  It was July 2009 and we had a routine visit at the Down Syndrome Clinic.  We spent some time with my favorite (and very missed) doctor, Dr. Bill Coehn.  We did the normal assessment of the boys and things were going the same as the previous appointment, when all the sudden Dr. Coehn asked me to take a survey of behaviors for Issac.  I filled them out and he proceeded down the hallway to the Developmental Clinic.  Upon his return he confirmed what he was thinking and gave Isaac a diagnosis of PDD Autism.  My world that I thought was consumed with Down Syndrome now had to compete with a diagnosis of Autism?!

I remember that the grief I felt after the PDD Autism diagnosis was much much harder than when I had received the Down Syndrome diagnosis.  I couldn't help but fret the double whammy that was presented to me.  My boys have Down Syndrome and now your telling me one of them has Autism too??  What will this mean for his future that I still haven't even envisioned with just having Down Syndrome??  What school is going to be able to handle a dual diagnosis such as this?? What about the other twin if they are identical??  What more can I handle?  Here was my solution:  I KNOW!... I will let the Autism specialists figure the Autism part out, I can't possibly understand two things.  I will continue to concentrate on the Down Syndrome part and ignore the Autism diagnosis, afterall, how different are the two?

Autism services began for Isaac about September of 2009 and I remained in denial.  By December we were back at the DS Clinic to have Caleb evaluated as per service providers who came into our house for Isaac observing the same things going on with Caleb and recommended we have him checked out.  Sure enough by January 2010 both boys were diagnosed with PDD Autism and I really had to accept the fact that Autism was now just as big a part of our lives as Down Syndrome was.

Three years later I can say that Autism is harder to deal with and accept than Down Syndrome.  Sometimes I selfishly try to find blame for things my boys do and I blame Autism before I do Down Syndrome.  They are non-verbal, they are not toilet trained, they hum daily to the point of  frustration to siblings and people around them, they have silly stimming objects such as a sock or a toothbrush, they rewind their favorite part of a tv show 150 times (or more) until they have plum just drove me crazy, they are aggressive towards self and others on a turn of the dime, oh I could go on and on and on.

What has Autism done positively for us?  Autism is surely a stubborn gene.  The Autistic mind tends to make people to do what they want to do when they want to do them.  If there is something that my boys WANT to learn or do, they learn or do it to the fullest.  Example, Caleb loves to dance so we got him Just Dance on the Wii.. Caleb can do the dances he likes the most with his back facing the tv and do all the moves right on cue.  Isaac loves to stim on toothbrushes by dangling and swinging them (unfortunately, not by brushing his teeth!).  He finds any and every way to steal his siblings toothbrushes.  His determination is amusing and I need to seriously just buy a case of toothbrushes.  Both boys are very visual learners.  Because of this we have taught them to read by sight words, they have proven how amazing they really are by their love of learning.  

I held them out of kindergarten for a year to allow them to grow a little and continue working very hard on their speech and social skills.  I was determined to have them speaking a few words before they started school, that did not happen.  They started kindergarten this year in the Autism Support Classroom.  There are 8 students in their classroom.  I could not be more proud of how well they have adapted and how well they are doing.  They communicate via sign language and Proloque2Go on the iPad.

I can sit and brew and wonder what the future holds for the twins or I can put my faith in God that he has big plans for them. I have chosen the second route.  I know that the Lord has blessed us with these boys for a reason.  Understanding and seeing life through the eyes of my children, I may never get to do.   But just knowing that God gave them to Tom and I allows me to think less of self and more of others, to accept that which is not accepted, to love those that are unloved.  I most certainly could not do this without the cherished prayers that I know people offer to us and without my families, friends and church support.

Hug those kiddos tight,  Autism or no Autism.

I'll end with a quote from Mr. Rodgers: 
"I like you just the way your are!!"


Monday, March 25, 2013

2013 Run or Walk for Someone Special

Less than two weeks from today will be the 34th Annual Run or walk for Someone Special.  My family has been participating for the past four years.  It is so much fun for the whole family.  Character for kids, games, food, Chinese auctions, prizes and best of all a sense of giving back to our local community.  The funds raised helps The Arc of Jefferson and Clearfield Counties put on three separate summer day camp programs FREE for children with special needs.

My Boys go to camp and Love it!

My three older children participate as junior counselors and they have so much fun making new friends and seeing old friends year after year at camp.

If you made it this far through the blog, won't you consider making a donation to our team this year?  Any amount would be greatly appreciated and will stay 100% local to our community.  

Click the widget on my blog sidebar or goto 

THANK YOU in advance for considering to support us!!!

Wednesday, March 6, 2013

Relationship Seminar at DuBois church of Christ

My family attends the DuBois church of Christ which is a very small church.  We easily make up 10% of our normal attendance.  I LOVE my church family and the fact that my children are way more educated with bible knowledge than I was at their age.  Ok Ok maybe even more educated than I even am now.  Their sponge like minds just absorb so much more than I am capable of, but my love for reading the bible and desire to be a good person drives me to continue studying as much as I can.

Somedays with a family as large as ours and the chaos that we endure with the twins special needs I find myself putting off the Word by tending to tasks that consume my day, literally. I have easily found myself sliding into a pattern of putting off today what I can do tomorrow and then end up never doing it.  I have started a many bible studies that sit unfinished and unread.  I have a daily devotion book that every year I choose as a New Years resolution, to just make sure that I start my day off reading this five minute devotion... and I find that I am five days behind all the time and have to play catch up.  I often have really good intentions of doing good works to only find myself in another unpredictable family situation that again takes over my time and energy. Its hard to get five kids ready and off to church on time for church services.  Excuses Excuses.

One thing that has always and will always be very important to me is relationships.  I love my family more than I can put into words.  I honestly only have a handful of friends, but the ones that I do have I value more than any worldly possession I could ever buy.  I love the Lord and I want to become closer to Him by gaining an understanding of how he wants a Christian to follow the example given by his son Jesus.

“A man ought to live so that everybody knows he is a Christian… and most of all, his family ought to know.”  ~ D. L. Moody

DuBois church of Christ is hosting a "Relationship Seminar" on Saturday, March 23rd from 9am to 2pm.  I am really excited to listen in on a topic that is so important to me.  I want to invite any and all of my local readers to come on out and join us as we learn how to strengthen relationships.  I am attaching the flier from church for more information.  Hope you'll join me!!!

==>> Click image to see larger

Thursday, February 28, 2013

Tristin Funny to remember...

Conversation to remember.  Today in checkout line at grocery store:

Tristin: Mom I am kinda jealous of you
Mom: (surprised) what would you be jealous of honey?
Tristin: That I will never have kids as cool as you do.

Took me a minute but then I busted out laughing, whata girl!!

Thursday, February 7, 2013

And so the guessing continues.. what stinks about non-verbal children

We made our way 2 1/2 hours to Pittsburgh today for an appointment for the twins in the Urology Department.  I left there honestly disappointed.  About four weeks ago I was given some hope that we might have figured out a problem that we are seeing with Isaac and have been seeing for over an year now.  You can read about that HERE...

My twin boys are now 7 1/2 years old.  They both have Down Syndrome.  They both have Autism.  They are both non-verbal.  And they both have so many things in common that when something is different between them, its REALLY different.

Isaac has been signing hurt when taken to the toilet for over a year now, therefore, potty training is not even  happening at this point.   If you read the post above you can get the whole story; so in brief, after many many months I realized that if he was signing hurt, then bye golly he is hurt.  We took him to pediatrician and she suspected meatal stenosis which is a narrowing or closure at the end of the penis that often causes pain for boys to urinate and has to be surgically repaired or opened.  Not that I was glad Isaac may have to have another surgery, but I was glad that we might have figured this whole thing out and could move onto potty training.

Get to urologist today, he looks and says that yes there is a narrowing there but not enough that he would consider surgery.  He said that "if he is eliminating in his diaper and not signing hurt, then he's not worried about it."  SERIOUSLY, I'm back to not knowing what is causing him to sign hurt.

We then go on about medical history and they ask if twins have constipation issues.. I say YES they have chronic constipation issues and they are on Miralax daily at this point... Then just like every doctor says about everything... Well, you have to get the constipation under control and then the pain will go away...

OK, here goes my rant!!!

You see that label from the MiraLAX container.. Use no more than 7 days.  We faithfully use Miralax 5 out of 7 day.  We have been for several months and before that we were using 2 to 3 days a week with no success.  Ontop of the five days a week we still end up doing full cleanses about once a month.. I am so fed up with Miralax blow outs.  I am so fed up with being afraid to send my boys to school and having them make a big mess for the aides to clean up.  Both boys have come home in a change of clothes a fair share of times.  Isaac probably more than Caleb.

We have increased their liquid intake, we have given the Miralax as directed, we have tried to give them fiber as much as we can.. I am out of ideas..

About four or five doctors have now told us "You have to get the constipation under control".  So here's where I need some reader input.

Tell me something new to try.  Is there any "Natural" things to try?  Something I should ask the pediatrician about?  A test that might be helpful to run on them?  Seriously, I know that this is a "Down Syndrome Thing" but how do you get it under control?

And to boot... the doctor said he doesn't know for sure if this is why he's signing hurt, but its as good an idea as he's got with him not being able to tell us anything else.  He did not want to get invasive and do catheters and such (which I appreciate) to test anything else, but What IF?? What IF its something else, What IF he is hurting, What IF we can not get this figured out??? I'm tired of trying to figure this out by myself..  Dang It, I'm tired of worrying about it!!!!

Wednesday, January 23, 2013

OMG I just had the best laugh!!!!!!!!!!!!

OMG I just had the best laugh!!!!!!!!!!!!

I don't know about you but when I receive a text from Isaac's TSS staff from school that started like this it caught my curiosity..

Then the text ended with:

Did you notice the scarf Isaac wore to school today??? It was a bra!!!!!!!!!!!!!!

OH  YEAH.... my face was beat red and I have been hysterically laughing all day long about it

Saturday, January 12, 2013

Signing "hurt" for a year when taken to toilet?

Yep.  That's my Isaac.  My sweet little love bug who is everyone's best friend, or at least tries to be.  We have been introducing potty training to the twins for a little better than a year now.  Our twins are 7 year old identical boys.  They are both non-verbal, have Autism, Down Syndrome and Sensory Processing Disorder. Due to the assortment of diagnosis' the twins have we have not been to concerned with pushing them to toilet train. They are delayed in all areas already and we knew that potty training would be a difficult area to concentrate on when they were totally not ready.

We began introducing books and videos at about 5 1/2.  Then we taught them the sign for potty.  We showed them where their pee comes from and told them why they pee.. We let them stand by the potty before bath time and asked if they needed to go.  They watched daddy go and thought it was funny.  Caleb started to "try" a few months ago and has had some successes.  Isaac however, always seemed really resistant and didn't want to.. As the months went on and Caleb was starting to go more and more (still not trained today) we decided to push Isaac a little more.

It was at that time that Isaac began signing "hurt" when he was trying.. HURT?!! no that shouldn't hurt honey.  "Its a different feeling but you can do it" we told him.  This continued on so we talked to pediatrician and behavioral specialist.  The guess was that he was perhaps trying to push the wrong way and was pushing to have a BM.  Perhaps Isaac was associating his chronic constipation pain with standing at the potty and pushing and hurting?

We went with this theory for awhile.  They started kindergarten in the fall and part of their daily routine involves trying to go potty twice a day.  The staff documents if twins' diapers are wet, dry or dirty.  They also comment on if they went potty or refused.  On Isaac's paper, signing "hurt" was a daily report.  We began to wonder if he was just signing hurt to get out of going potty.

I basically woke up this week and thought, that's it.. Why would a child who most likely is not capable of signing a word to intentionally get out of doing something keep signing that word?? If he was signing Hurt, then doggone it... he must hurt!!!

I took him to the pediatrician again yesterday and I said I want a total work up on this child.  I want bladder, kidneys, penis, all the plumbing checked out.  I want to rule out any pain before we move forward with potty training.  Isaac is under the care of a urologist for retracting testicles but they have never really examined the structure of this man parts.  The pediatrician said she would start there and go forward if everything looked right.  

She grabbed her flashlight, we held down a screaming boy and she had a look.... Uh Huh... right away she said that we needed look no further.  She said to go ahead and call Childrens Hospital in Pittsburgh and have the urologist take a look.  She was certain that Isaac has Meatal Stenosis.  Well, that's a new word for us..

She explained that sometimes boys swell up after circumcision as an infant and it fuses the urethra together.  Its often caught around the age of two when typical children begin toileting.  UGH!!! My Isaac is 7 1/2 and we are just now finding this?? Poor bugger, he really does hurt when he tries to pee.  The doctor explained that it feels like a UTI without actually having a UTI.  The urge to pee is there but often can't go.  Its like going the the bathroom through a pinched straw.

Listen to Me...

So as I sit here typing once again feeling  regretful for not "listening" to my child who is capable of communicating through sign language, I am waiting to hear back from urology.  I am hoping that they can get Isaac in sooner than later to give this poor boy relief.  From my understanding it is a quick 5 minute surgical procedure that is followed by full recovery.  The only downfall is that anything requiring anesthesia for my twins must be done at Children's Hospital due to their moderate Subglottic Stenosis.. narrow airways..

Mama is sorry baby boy :(

Thursday, January 10, 2013

Blessings from Shane and Wyatt's Down Syndrome Foundation

Isaac was blessed by a newly started foundation called The Shane and Wyatt Down Syndrome Foundation. These boys have stole a spot in my heart almost three years ago when I heard about them.  See they are twin boys both with Down Syndrome who live in Pennsylvania too.  I hope to some day get our guys together.

Dad, Eric, started the foundation last year.  Taken from their facebook page:  This Foundation will have two primary points of focus.  The first will be to recognize those in our schools and communities that are making a different in the everyday lives of those with Down Syndrome or special needs.  The second will be to assist individuals or families, who many not always ask, but could use a helping hand.  

When Eric heard that we were needing a second iPad for one of the twins, his Foundation decided that Isaac would be the first recipient to receive assistance from them.  Our family is so grateful for their consideration and their generosity.  Coming from a family traveling the same path as ours is also so humbling as they know the ins and outs of our daily lives more than any other.

We gave Isaac the iPad recently and here is some of his reactions:

He knew right away what it was :)

Isaac was signing "Computer"

Look Mom, I want this!!!

Is this for real mama??

THANK YOU Shane and Wyatt's Down Syndrome Foundation

The iPad is currently in the hands of the school speech therapist.  She is programming Isaac's iPad to match Caleb's so that they can carry on a conversation.  She said it is a bit time consuming but hopes to have it up and running very soon.  She also commented on how impressed she is at their ability to catch on to the Proloquo2go application we are using.  

I have asked the twins TSS workers to gather some video of the boys when they use them to communicate, hopefully, I will be sharing that here soon!!!  I myself could not be any more anxious to see it.

I can't wait till my boys are able to "talk" to family and friends who do not know how to interpret their sign language.  This is truly a life changing gift....

>>>If your looking for an organization to support this one is it, please LIKE them on Facebook and follow their good works!!!  We are proof that they are indeed doing good works!!!!!

Your Child by Jennifer Shaw... Beautiful!!!!

I don't often share YouTube videos on my blog that are not my own, but this song really touched me today and I thought it was a beautiful video.  One that needs spread and shared.  One that parents raising children with special needs can relate to and one that will teach those who don't have children with special needs.

Beautiful!!!  Thank you Jennifer Shaw...