My Children have Overcome, Part 2 (Part Andy!)

My special needs kids have overcome the world, part Andy

Like most special needs families, we have dealt with many specialists, therapists, emotional turmoil, challenges, and blessings. And, like many other special (awesome!) families, we’ve dealt with it for multiple kids. And, like so many other special needs families, my family’s story can’t easily be told in blog posts – it’s one with many twists and turns along the way (that’s not to say I won’t blog away about it!).

In Part One of this introduction to what my kids have overcome, a #Special Saturday topic last weekend, I shared a little about my man Bobby, whose smile is enchanting and questions sometimes frustrating. He’s overcome a lot, of that there is no question, but in this house that isn’t the exception, it’s the rule.

Mini-Moody Andy–11; Special Needs–0

Andy playing piano (special needs? What special needs?)

Andy always loved playing piano. Here, he was about a year and a half, if that old.

I saw the geneticist for the first time one-week before Andy was born, which was fortunate since that same geneticist just happened to be the head neonatologist present after Andy’s traumatic birth. I was already in the hospital because my blood pressure was rising and Andy wasn’t growing like he should. They induced labor after almost a week in the hospital, when Andy was only 33-weeks-old.

Unfortunately, my body didn’t play nice and in an extraordinarily scary experience, my placenta abrupted. This means my placenta separated from the wall of my uterus (ewww!), and translated into lots of blood. Andy and I wouldn’t be here today if I wasn’t at the hospital when this happened, they said, because I literally would have bled out too fast.

We had another reason to be grateful, because the geneticist was able to declare him Rieger Syndrome free within moments of birth and after no sign of the eye problems. Andy ended up home within a couple weeks, his small size making this mommy very nervous.

When special needs comes calling

I can’t point to one moment where everything became clear, or when we suddenly realized that Andy was in need of a bit of help as well. Bobby was 14-months-old when we welcomed Andy into the world, and we started Andy’s therapies a few months later, and for the next two years the boys shared multiple weekly therapies between the two of them. At one point, they had 14 individual therapies a week. It was a stressful and crazy time.

Our Andy learned to crawl by 18-months, but did so by dragging his head around because his neck muscles weren’t strong enough. Around that time we realized his development was scarily familiar – and behind. We entered the special needs diagnosis race with our second child, and it wasn’t any more fun the second time around.

When it all adds up, and mommy stops trying to fly

Here things become confusing for me, remembering all these years later. Because, well, let me tell you a secret, I’m not a perfect mother. And I broke. Read a little about it here, but I spent some time in therapy where all the nice doctors told me I didn’t have to be super mom.

If only it were that easy to change a mother’s mind. To this day those sweet doctors would be quite disappointed with me, because I still feel overwhelmed and try way too hard to do it all.  But Andy? He is a remarkable little guy and has come so far over the last several years. To tell the story completely would take a book (someday), but for now let me share a little bit of my little man’s amazing story of awesomeness.

Those special needs labels – do they ever stop?

There comes a time when answers just don’t make it all better, you know? Eventually, I realized that each new diagnosis wasn’t the end of the world and not important in the whole scheme of living our lives, but back then, we had one diagnosis after another coming in for a few years straight. A diagnosis for Andy. A diagnosis for Bobby. Special needs party for us all.

  • Rieger Syndrome (AKA Axenfeld-Rieger Syndrome)
  • Peri-ventricular leukomalacia
  • Static encephalopathy
  • Possible hydrocephalus
  • Autistic behaviors (before the next ? one)
  • Autism
  • PDD-Nos (more than one kid)
  • Blindness
  • Legal blindness
  • Global developmental delays
  • Developmental delays
  • Epilepsy
  • *yawn* Really? Are you still reading the list?

Learning the diagnoses, the “special needs,” don’t make the child

The fact is, after a certain point, the diagnoses become more than the total of who your child is. Such was the case with Andy. He gained his diagnosis of Autism while I was pregnant with Logan. At that same appointment we learned he also met the requirements for that tricky Rieger Syndrome, without the eye condition that usually goes along with it.

We had Logan long before our next major round of tests for Andy revealed why he was having so many difficulties in school (four years difference between the youngest minis). So the whole sordid tale is cause for another post … one day. :-)

One special needs story, fast forwarded through life

Andy has made extensive inroads despite his dyslexia and dysgraphia, despite his run with epilepsy (no seizures for 4 years!), despite the prematurity and brain damage (hate this term). Andy is remarkable, as evidenced in a recent post I wrote, and he still has many issues. His autism is very mild – I call him my quirky guy. He’s almost as tall as I am, and surpasses his older brother by several inches.

Andy has overcome every single diagnosis ever given to be the young man he is today. He’s slowly growing out from the underneath the veil of prematurity and the doom of early childhood diagnoses the number far too high. He’s my red-headed, helpful, empathetic, amazing little man. He’s just one of my mini-Moodys, and like all of them, overcoming the stigma of too many diagnoses.

So I’m here again, at the end of another post about my amazing guys, and guess what? Part three comes later this week and is about the youngest of the minis and one little man you’ve already heard a lot about. His story is equally amazing, because he was overcoming the world before he was ever born.

Stay tuned.

What has your special needs child overcome? 

 

Katrina Moody

Katrina Moody

Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
Katrina Moody
Katrina Moody
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  • Rachel

    Thanks for sharing some of your challenges and the amazing triumph that your boys and you have overcoming these challenges. As you stated there is a time that your child’s diagnoses can become more their total. I had this happen with Damian. He was born and diagnosed within 5 days officially with Tuberous Sclerosis Complex. He had brain tumors, heart tumors, and had other breathing complications at birth. At 1.5 months he was diagnosed with Epilepsy later we added asthma, autism, cognitive impairments, allergies, functional constipation, ect. I learned somewhere in-between epilepsy and autism not to always believe what “doctors” said he could or couldn’t do. Today he is learning to count (he can count to 2 with visual prompts), he knows his colors and is starting to really learn to talk in some manner. We work with augmentative communication to help him express more complex thoughts and has been learning to use a SGD to help him. At one time I was told he would never talk, should be institutionalized, and that he couldn’t learn much. They are wrong these kids with such challenges rise to those challenges when supported by loving and caring parents. We may not be able to be super moms but we help them be super kids!