There are certain people you come across in life who just always make you smile.  They are able to see the glass as half full and bring positivity wherever they go -- kinda like a ray of sunshine on an otherwise cloudy day.  You can't help but to admire and respect these people cause they make you want to be a better person yourself.

 

My friend, Sari, is one of these amazing people.  I am in constant awe of her optimism, courage and strength.  She somehow juggles three kids, one of whom has special needs, and makes it all look way too easy.  I swear if I didn't love her so darn much, I'd probably hate her!  She graciously agreed to do a little Q&A session for my blog to talk about her experiences with Kyle, her special needs child, who just so happens to be the coolest fourth grader I know.  I am beyond honored that she was so open and willing to share her story with not only me but also all of you.

 

 

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1. How far along in your pregnancy were you when you found out you'd have a child with special needs?


Oooohhh- that’s an excellent & complicated question!


We were SO happy, yet cautious, to be pregnant with Kyle. We had a daughter who was 4 1/2 and we’d had two miscarriages. At the 20-week ultrasound, the doctor found an anomaly in his heart, as well as other concerns. Although the other issues were unfounded, Kyle was diagnosed with a large hole in his heart. We also had an amniocentesis and no chromosomal abnormalities were discovered. So, although he had a hole in his heart, this is not necessarily a special need.


Kyle was born through an emergency c-section because he had stopped growing at 37 weeks. We were given this tiny baby to take home and told, “Bring him back if he turns blue.” During our first few weeks at home, we were really focusing on Kyle’s bum heart & the impact of that on everything else, including his difficulty gaining weight, inability to lie down flat on back or stomach because it was more difficult to breathe, impending surgery and the constant mantra, “Please don’t turn blue! Please don’t turn blue!”


At about 3 months, Kyle was diagnosed with Blepharophimosis-Ptsosis Syndrome, by an opthamologist. This is a very rare syndrome that includes very small eyelids, cupped ears and often includes a hole in the heart. After that, when “bonus” issues came up, such as elevated liver enzymes which sent him to surgery for a liver biopsy, it was attributed to Bleph.


After Kyle’s open-heart surgery at 5 months, it was expected that he would begin to catch up on milestones that he’d missed by sleeping to survive. But at a year, when he still couldn’t turn over, we became really concerned that something else was going on.


We slowly added specialists of many fields to our calendar & life, but probably a turning point was when we found a pediatric neurogeneticist. Phew! Can’t imagine how many years you have to go to school for that! At about 18 months, Kyle was diagnosed with cerebral palsy. NOW we had a long-term special needs category. The reality is, although this might have been a traumatic diagnosis for some, we were relieved to finally have something about which we could research, talk, get advice, and move forward on!


2. What specific special needs does Kyle have?


Well, he’ll always have cerebral palsy. For Kyle, that means some very tight muscles in his extremities and a core that has low muscle tone. We monitor his tightness closely because his muscles could become so tight that his hips become dislocated or his bones break. His muscles need to be taught how to perform. For example, a therapist had to actually help him learn to walk by practicing the movements over and over. He also often needs to learn how to do things in a different way, such as he won’t ever be able to “pretzel” sit on the floor with his classmates, but he can side sit or sit on his knees. The CP also affects his tongue, lips and surrounding muscles, so it is often difficult to understand what he’s saying.


In addition to the heart surgery and Bleph, Kyle had two reconstructive eyelid surgeries. Functionally, he now sees great! The Bleph syndrome doesn’t seem to impact him in any other important way.


For some reason (not moving the first year? Being so delayed physically? Part of Bleph, CP or something else?), Kyle is developmentally delayed. Although always moving forward, he seems about four or five years behind his same-age peers. Also, he has word retrieval issues and motor delays, which make it very difficult for him to express his ideas verbally.


And Kyle continues to have what we call “bonus!” stuff- nothing to do with CP or Bleph. Examples would be strabismus, a hernia, lack of growth hormone production, etc.


All this leads to lots & lots of physical, occupational and speech therapy, doctors visits, and exploring new and interesting activities like hippotherapy (physical therapy on a horse!) and therapeutic swimming (swim lessons & occupational therapy in a very warm pool!)


3. How did you prepare your other family members for the challenges that would lie ahead with Kyle?


Ha! Not very well!  We tried to answer all of big sister Kate’s questions and told her what we thought she needed to know in a way she would understand at the time. Little brother Luke has always known Kyle just like this and doesn’t seem to have any questions at all! He just tells everyone his brother has cerebral palsy and he’s so cool and they all seem to believe him.


Everyone else, we just told them as soon as we found out stuff. We were so wrapped up in all the day-to-day, we let them fend for themselves. Later, I found an essay called “Welcome to Holland” by Emily Perl Kingsley. I think it’s beautiful and hopeful and true.


4. How did you deal with unwanted looks/questions from strangers?


We had a LOT of looks when Kyle was a baby, because he looked blind and he had to wear a helmet on his head, plus he was teeny, tiny. Sometimes people stared with their mouths agape and I was so offended, I’d be fuming to myself! Then I realized my constant companion, Kate, was watching how I reacted. The best thing that happened was at the town recreation center a boy of about 4 years old came over and said, “Why does he look like that?” Kate was about to explode. I said, “Oh, he wears that helmet because his head was flat and this will help it.” That little guy bent over, looking closely, and said, “He looks like a football player! He’s so cute!”  Kate and I cracked up and she learned not everyone was being critical and I realized I could either extinguish the issue or exacerbate it.


5. What was the first school experience like with Kyle?


Well, the first school experience was a little, one-hour a week parent-tot program for two year olds. It was a real eye-opener for me. We’d taken a lot of little music programs, etc, with both boys, but those were all-ages classes. Here, Kyle was with same-age peers who were engaged in the activities. Kyle was still crawling, had to pull himself up on a table, chair or pants leg, couldn’t negotiate his body to get into a chair without help, had difficulty holding crayons, couldn’t play at the sand table without someone holding him because he needed two hands to hold on, wasn’t yet speaking, and the list went on & on. Up until then I had been celebrating how far he’d come. Then I saw how far he had to go.  HE, however, had an absolute blast!


6.  Do you feel like the challenges have in any way hindered or strengthened your marriage?


Don and I are lucky to have been very good friends for a long time, to have opposite strengths & weaknesses, and to rely on humor and repression when things get tough! I don’t think having a special needs child has strengthened or hindered our marriage, but we do know each other better & understand how each reacts in crisis mode. The first year was very, very tough, as well as each of Kyle’s seven surgeries, but there are so many other stressors during a marriage, like moving, losing a job, and teenagers! These challenges are just part of the journey.


7.  What's the hardest thing about having a child with special needs?


Not knowing what the future will bring and having confidence that we’re doing the best we can with what we know.


8. What's the greatest thing about having a child with special needs?


All the amazing people we have met along the way!!  From Kyle’s therapists, doctors, nurses, teachers, administrators, paraprofessionals, parents, strangers on-line -- it’s a world filled with talented, caring, optimistic, skilled people who I didn’t even know existed before I had Kyle.


9. How do you always keep such a positive attitude?


I don’t!  When I feel I’m not educated enough, I’m not doing enough, not preparing enough, I try to remember nothing’s as bad as heart surgery. Reflecting back on those days makes everything else seem okay. Plus, hanging out with that happy, goofy, crazy Kyle helps perk me up. Hey, he’s not down, why should I be?


10. If you could give one piece of advice to parents of special needs children, what would it be?


TRUST YOUR INSTINCTS!


You know this particular child better than anyone else in the world. You will know if something doesn’t feel right -- do you need to find a specialist? Is this type of therapy not a good fit? Do you need to switch teachers? Schools? Therapists? Does your child need a break from everything?


And don’t beat yourself up -- you, too, are doing the best you can with what you know right now.



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Like his mama, Kyle is one of those bright and shiny people who I am so grateful to have met.  Just watch the spunk and spirit of this incredible kid singing his heart out, tryin' to get a little "SATISFACTION", and I promise that you, too, will be grinning from ear to ear:



**And be sure to check out Sari's blog, "A Vintage-Twisted Life", as well as her fabulous hand-painted Vintage-Twisted furniture creations.**

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Tags: Bleph, cerebral, family, kids, miscarriage, moms, motherhood, needs, palsy, parenting, More…pregnancy, special, surgery, syndrome

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