Guest Blogger: Marissa of 4 Little Monkeys

Sometimes I equate having special needs kids to having newborn multiples. When Jonathan and Matthew were first born, we had to be super organized and very strict with our schedule with them or the day (or night) would get thrown off. It can be the same way with having special needs children. I happen to have three kids with unique needs and a fourth who is gifted.

At first, I thought my twins were delayed due to their prematurity and would catch up by two. When both boys hit 2 I was overwhelmed with having a newborn and we decided to give it a bit more time to let them both mature a bit. That’s when we noticed that Christopher seemed to be having delays as well. He was a preemie as well and we were told the same thing “He’s premature. Give him some time.” There was just so much that didn’t add up with him and I questioned every appointment. I’m glad I pressed as we finally got our why with him this past winter. Christopher has something called a 16p11.2 duplication. It is a rare genetic syndrome but it is commonly associated with the autism spectrum disorders.

My need for structure and routine with having newborn multiples has now come back to me when it comes to Christopher. He needs and craves routine and predictability.
In order to be organized and keep track of all the doctors’ appointments, paperwork, etc you need to come up with your own organization tool. I color code everything. Each kid has their own file http://www.staples.com/Staples-ColorWave-Expanding-Files-Letter-A-Z-Index-Blue-Each/product_453390?cmArea=SEARCH . I bought them at Target in their dollar bin. Unfortunately, Chris has graduated to a bigger file system. He goes to too many specialists. When we go to the different specialists we have to for the boys we take these files with us. It makes it easier to answer questions and provide information to the different doctors. In fact, in August when we saw Chris’ geneticist he commented that we were the first family who has done this. It made it easier for him to piece the information together.

Our life with the boys is very hectic. We have a constant barrage of appointments, therapies, phone calls. Right now we see ENT’s, GI’s, Neurologists, Eye doctors, developmental pediatricians, geneticists, and our pediatrician. All 4 of the boys are in school now. Jonathan gets special education, Speech Therapy, and Occupational Therapy. Matthew gets special education, physical therapy, speech therapy, and occupational therapy. Christopher gets special education, ABA, speech therapy, physical therapy, and occupational therapy. We are also getting occupational therapy outside of school for him.

Although we are fairly new in the “why” we are managing with the help of several support groups. Christopher’s diagnosis is so rare that we found about 30 people on facebook and we are all going through this together. I’ve tried other places as well and although I’ve found some places more helpful than others. I’ve also found support with my fellow MoM’s.

~Marissa

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3 comments

  1. Marissa,
    I came across your post, and thought I'd send you a quick note. I am a genetic counselor in Atlanta, and we are trying to get the word out about a new support web-site, http://www.simonsvipconnect.org, for families affected by 16p11.2 differences. You sound like you are already connected pretty well with support groups, but I wanted to make you aware in hopes you will find it helpful now or in the future.
    All the best to you and your family.
    Tricia Page
    ppage@emory.edu

  2. Tricia,
    We are registered with simonsvipconnect.org and are in the process of waiting to find out of we can participate in a study for other 16p11.2 families.
    Thank you!
    Marissa

  3. Confessions of a Closet Hoarder but you can call me Judy

    You're so right. Things can be SO overwhelming with all the specialists and doctor appointments and therapies. You make me exhausted just reading it all. It brings back many memories. 🙂

    I'm so glad you've gotten hooked into what sound like some great support groups. That will help. And your boys…precious as always. 🙂

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