Thursday, June 3, 2010

Almost Typical... But Then Again Not Really

All three of my children have special needs of some sort. As a parent of children whose needs are mild, I cannot say I relate to the admirable strength it must take to raise severely disabled or ill children. However, I still feel closer to this situation than to that of a parent with typical kids.

Benjamin's autism is high functioning, and so slight to an untrained eye, that it gets missed often. I guess we are fortunate for that. But I know what it means to suffer for years knowing something is not right with your child. I know how it feels when doctors repeatedly dismiss your concerns, until one day you find one who agrees with you. Strangely, in that moment, you suddenly wish he would go back to disagreeing with you. But no, autism it is, and your life is forever changed. I know what it feels like when the diagnosis settles in, when you accept it, and when it feels like coming home to what you knew all along. I have had to work hard to make others understand Ben and see what he needs. I feel helpless when he has tantrums over inexplicable things. My concerns range from the short range (“Will he learn to ride his bike?”) to the long term (“Will he drive a car? Go to college? Get married?”) I feel proud when he learns something new, and when I can see something through his eyes. I hope that he can show people that autism is sometimes different than what they thought, that it is big and consuming, and a little scary, but most of all it is strangely beautiful.

Zachary is a typically developing child, but he has a milk allergy. This diagnosis did not come easily, either. As an infant he had constant gastro-intestinal issues and did not sleep well. Two blood tests and a skin test showed nothing wrong, but again, I knew something was. An endoscopy finally gave us the proper information. And so, I know what it feels like to have to panic over every birthday party or special event at school. I know how to advocate for my child. I feel proud of him when he asks about food and what is in it, or when he simply knows he cannot have it. Amazingly, we hear few complaints from him about missing out on things, but I know it must be rough at times. I fear it will only get harder as he gets older and wants to just fit in with his peers. Unlike most kids, he has been deemed unlikely to outgrow his dairy allergy. I sympathize with him not being able to partake in all the pizza parties that will come about more and more through sports, sleepovers or late nights studying in college.

Joshua was different right from the start, with a severe torticollis (wry-neck) that required physical therapy from a very young age. So we never experienced typicalness with him, and that was a challenge. I know what it feels like when your child is not doing the skills you know he or she should be, when milestones keep getting missed, and when you try and smile but know in your heart that surely something must be wrong. I know how it feels when, at the 18 month well check, you finally hear the words “cerebral palsy,” and think- wait, this cannot possibly apply to my child. But it does. I have had days of feeling sorry for myself because the other moms get to go to the gym or Starbucks while I attend pediatric therapy after therapy or to go medical appointments. We sometimes get stared at because Joshua is screaming or gagging on food or falling over in a way not typical for his age. And yes, the stares hurt. Through that, I know what it feels like to lie awake at night wondering if your child will ever eat properly, run, or jump.

Thankfully, I also know the absolute joy that one smile can bring, and that everything seems to come together in that moment. I know that I am lucky, and that our situation is so manageable. I know each day is new, and that I can handle whatever gets thrown my way. I am happy to belong to the “club” of special needs parents because through that I have a lot more sympathy for other people's struggles. I see a little of myself in their highs and lows. I am more patient with the world in general, in fact. I never expected autism, food allergy and cerebral palsy to be words that would be uttered daily in my home or swirling in my mind at all hours, but as many other parents with similar lives will tell you, I wouldn't change a thing.


g-girl said...

oh hon, such a great post. i wish you'd write more often but i know how busy life is. the boys have been blessed with a mom like you. no one could do for them the way that you have. a mother always knows and it sucks that those that are doctors/whatever don't give moms enough credit.

SarahinSC said...

Great post! I completely understand! I have one son with epilepsy (well-controlled) and one son with bipolar disorder. Parenting is tough work! Keep going with your chin up!