31 for 21 Day 18... The boys are FOUR

Today at church the boys got lots and lots of birthday wishes. Many comments on how grown up they look with their hair cut, many comments on how they can't believe its been three years already, many comments on how far they've come, and then more comments on how they can't believe they are three already... LOL

I think that this is something that I really have to come to grips with too. I still call them the babies. And I do this DAILY! They aren't babies anymore. And where did the age of three go?? Its like they went from 2 to 4 way to fast. I know that this is a personal struggle for me, treating them like they're younger than they are. Now YES I'm very aware that they are delayed and they still need me more than a typical four year old but I often wonder if I were to be a little more tough in what I did or did not do for them, would they do it for themselves? Now I don't mean that if I didn't spoon feed them their meals for a day and they were starving I wouldn't feed them to see how long it would take for them to be self feeding.

Self Feeding. This is an issue for us right now. Isaac is self feeding himself cereal, but thats it. He won't self feed anything else but a bowl of cereal. But at least he's doing that. We put a bowl of ice cream, yogurt, rice, anything else, he'll sit there and stare at it or throw it?? Caleb is still hand over hand to even get him to bring a spoon to his mouth. Am I babying them by caving in and feeding them?? How do I just say OK BOYS, your four now, time to feed yourself. I'm struggling with this.

Potty Training. Every parent gets anxious and excited to get their child potty trained and parents of multiples get even more excited. I am dreading it. I just don't know if they are ready, but how will I know if we don't at least give it a running chance? What is a good age to try? When did you all start training your child with Down Syndrome?

Drinking out of a straw.. That's something else we just have not been able to accomplish. We're working on it but not there yet.

Blowing.. I was hoping that they would be able to blow out their candles when they turned four but we are no where near that yet.

Throwing Stuff Oh my gosh do the boys throw stuff. Non stop. They want a drink, they chase me around the house signing milk milk milk. I get it for them they take two swigs and THROW the cup!! They pull anything off the counter they can reach and throw it, they want you to change the TV station so they bring you the remote and after you change it to what they want.. They THROW it. They come into our bedroom and throw Tom's alarm clock everyday?? If you put food on their high chair that they don't want they throw it. This gets frustrating for sure.

I guess this turned into a ranting blog entry. I guess I'm just trying to come to grips of needing to treat them like toddlers instead of babies now that they've reached the age of FOUR. But its the things mentioned above that I struggle with that perhaps keep me from treating them like big boys. I think we're in the terrible two's!!!

Any suggestions and comments welcomed :)

31 for 21 Day 17... Happy Birthday Boys!!!

Today is Caleb and Isaac's 4th Birthday. Where did the time go? I am still just so amazed that we have had 4 wonderful years with the boys already. Our journey with them has been rough at times and completely amazing and fun the rest of the times. We have some obstacles we face with them. A diagnosis of PDD-NOS Autism for one, being completely non-verbal another, and still some drinking issues that we have to thicken their liquids for.

Thanks to their TSS workers, the services we receive for their Autism are exceptional and very worth while. I have so many people tell me they could never have someone in their home as much as we do on a weekly basis. At one time in our lives, when the boys were sick and receiving early intervention and receiving TSS services we had someone in our home 60 hours per week!!! Yes that was a bit extreme, but its what we needed at the time and I can only look at it now and realize we've come so far and life is good.

Being non-verbal has its ups and downs. The biggest downer is I haven't heard them say Mom yet. We DO have communication, they sign. It's such a wonderful tool and I would recommend it to anyone and everyone with children. Not only children with Down Syndrome but even those children without. Teaching your child sign language does not keep them from talking, but it does keep some frustration levels down while they are learning to talk. We still have hope that the boys will talk one day. What is the up of being non-verbal? They aren't talking all the time..LOL My guys do alot of humming, they make some noises when they are playing and stuff but they are not complaining and bickering like my other three children are all the time.

I am so proud of all my kids. Tristin, Camille and Elijah are wonderful siblings to the twins. Life with brothers with Down Syndrome is just normal for them and they don't look at it as if their brothers are any different than anyone else's brothers.

Another thing that people always comment on is the fact that I get both boys smiling in photos all the time, when they may only have one child and can't even get the one child to smile for the camera. To that I say...see how many photos I have to take for one good one???

31 for 21 Day 16... Before and After Haircuts

So cutting a kids hair with sensory issues IS NOT a fun thing, let alone two of them. Thankfully I have someone who will come to the house while the TSS staff is here to help. We have found that putting them in their high chairs in front of the TV watching their favorite program or listening to music is the best way so far we've found to do the job.

Caleb Before:


Isaac During:



Making up with Issac by offering him a cracker:

But as you can see, he's still distraught


Caleb After:




Today after a walk with mom at the mall and a yummy lunch:

31 for 21 Day 15.... Reeces Rainbow

Of course I have a huge heart for children with Down Syndrome. Of course I have a houseful with five children, and Of Course if I could get my hands on some money I would so love to bring another child into our family through adoption.

Grab a drink, click the link below and take the next 12 minutes and 34 seconds and watch this video they put together. It will touch your heart.


Reece's Rainbow

31 for 21 Day 14... Down Syndrome Features

One thing that I have come to love more than anything are the features of people with Down Syndrome. I found this photo on the left when I googled Down Syndrome Features. I know that some may find that statement odd, but I absolutely love looking at people with Down Syndrome and admiring their beauty. The almond eyes, the smaller facial features, their beautiful smiles, their attractive personalities.... I could go on and on.

To clear up any misconception some may have, There is no degree of Down Syndrome. My boys do not have mild Down Syndrome because they have mild features. I hear that often, Oh they must not have it really bad because they don't look like they have Down Syndrome alot. Having Trisomy 21 does not determine your personality, your IQ, your future, your life choices. I know many people who's children are not qualifying for services because their children do not need it. I know many parents who have their child potty trained at two. I know many parents who's child was talking at 12 to 16 months of age just like the typical children are.





How could you not love these features??

Here is an Oldie but Goodie. See if you can find the boys in this video:

Make an on-line slideshow at www.OneTrueMedia.com

31 for 21: Day 13 Is that because of their Down Syndrome?

OOPS, I missed my first day. Not bad considering I've suffered with a terrible flu or cold or whatever it was for the past 7 days, and still have terrible congestion and coughing going on. Enough Excuses.

So yesterday we went to Pittsburgh for a Pulmonology appointment. We go for a visit every 6 months. The twins have been diagnosed with asthma and we usually have long rough winters dealing with colds, bronchitis, pneumonia, and lots of breathing treatments. Because of this we always start taking Singular and Flovent from October to April every year to help steer us away from breathing issues. On our way there Caleb started acting a little fussy and I was hoping he was not getting what I'm recovering from. The Doc listened to him and sure enough, he's wheezing..UGH so not only do we get to start Singular and Flovent, now we're giving albuterol treatments this week. Let's hope its just a cold and nothing else.

One thing I should have done over the past four years I wished I would have done, just to know kinda thing is record doctors visits in a log book. I know we have made more visits to Pittsburgh in the past four years that I have in my entire life. (And thats even with me going to college in Pittsburgh and coming home often) We have had more than our share of visits to Childrens Hospital. Is that because of Down Syndrome? not entirely.

That is one question people ask me all the time. Is that because of their Down Syndrome? The asthma, banging their heads with their fists all the time, swinging and chewing on socks, their picky appetites, I don't know I've lost count of what all that's been asked about. The answer is more often than not NO. Every kid with Down Syndrome is not the same as any other. The only thing that every kid with Down Syndrome has is an extra 21st chromosome. Just like other kids who have asthma don't have it just because they are typical kids. Its not a question that offends me, just kinda makes me laugh that people pair having Down Syndrome together with all the bad stuff.

My kids with Down Syndrome are more like my typical children than they are given credit for. It may take them a little longer to get to that point, but they get there. They get frustrated, they pull hair, they take toys away from each other, they laugh, they hug, they love to kiss, they have very defining personalities, they give me more joy than I could have possibly thought I was capable of at one time in my life.

31 for 21 Day 11... Family

I just got word that my brother in law Jim just finished the Chicago Marathon. I am so excited for him and proud of his journey to get there. He injured his foot about three weeks ago and it was up in the air even just this week if he was going to be able to run the 26.2 miles or not. So this was an even bigger accomplishment for him to not only run that distance but to do it while in pain.

This brings me to the subject of FAMILY.

When I received the diagnosis for Caleb that he had Down Syndrome I was alone in the NICU with my sister in law Megan. She was one of the best people I could have wished to have been with when the news was delivered to me. She is often a girl of few words, but she gets her point across. She said It's no Big Deal, you can do this. And to her, I believe its truly no big deal. She has a cousin who is like a sister to her and who has a Developmental Disability of some sort. Her cousin is, I think 19, such a fun person to be around and yet still needs the scolding a four year old would need for doing something they know they shouldn't have done, she can be quite mischievous at times. Megan knows what her aunt has gone through, what the family has gone through, how her cousin has affected many peoples lives for the better. And therefore I trusted that it was No Big Deal.

I called my husband and he met me at home and I told him about the diagnosis. We cried briefly, more out of fear. Fear of the unknown, fear of how our lives were going to change, fear of what others would say, fear for our children, fear of the future. In response to the fear we dove right into research and some of that scared the tar out of us even more, but most of it did actually settled our minds a bit. That this was indeed No Big Deal.

I have to say that at first breaking the news to family was heart wrenching. Each member took the news a little different than the other. We had some family members who began crying instantly, we had some family members who said they were so sorry, we had some family members say we were good parents and we could handle anything God gave us, we had family members make us feel like this was going to be a terrible burden on us and what were we going to do... Yea, a very broad range of emotions we had to deal with along with the fact that we still had two very tiny babies in the NICU who were still needing alot of medical attention to keep them alive.

Aside from breaking the news of the diagnosis, my family was absolutely amazing. I was in the hospital for several days before the boys emergency c-section, and then stayed in a week after they were born, and then a very long 84 day NICU stay for Isaac in Pittsburgh. During all of this, Tom and I closed on a new home. My family cared for the three older children and they all pulled together and scheduled who would have the children when, who would be feeding them, getting them off to school, etc..etc..etc.. AND my mom and sisters pulled together and painted and wallpapered almost the entire house for me while the boys were in the NICU so that there would be no paint fumes to deal with when they're wee little bodies came home finally. AND my church family provided us with meals AND my Mothers of Multiples group provided us with meals AND the prayers we received were so comforting.

One of the best things about a Down Syndrome Diagnosis? Family. It pulled us together more than we could have thought. It made us realize what is important. It helped us appreciate that just being here for each other means more than a high IQ or a big pay check. It means that God does give us things at just the right moment for just the right reasons. And I know that there are many people who would not want to deal with what we do, but not having been put into the position as we were almost 4 years ago I may have thought and said the same thing. But today.. Today I thank God for his DOUBLE BLESSING on my family. We have all grown from these boys. I love my family.

What would you say is one of the Best things about a Down Syndrome Diagnosis??