Thursday, June 24, 2010

Hardest Questions

A few days ago I took my middle child, Zachary, to see our developmental pediatrician regarding some concerns I had. While she did note that Zach is very impulsive, she basically told me that when he acts up or gets emotional it is the product of having two special needs siblings and nothing more. This made me want to cry for two reasons. One, he is stuck in a tough situation. And two, someone saying out loud that I have special needs kids, despite the fact that it is stating the obvious, always feels like a strange dose of reality.

On the drive home from the appointment, I decided to talk to Zach about his brothers. Zach, while typically developing, does have a milk allergy as his "issue," so I angled it that way at first, talking about how everyone is made differently and everyone has different things about their bodies or minds... things that they struggle with.

Regarding Ben, who has high functioning autism, we talked about how the way he looks at the world is different than the way the majority of other people view things. I told Zach that Ben cannot help it, but also that it would not change. To put it to a child's terms, I said, "You know how Ben is obsessed with his Star Wars figures and he lines them up and gets mad if anyone touches them? Well, when you and Ben are big grown ups, and you go visit him at his house, he will probably still have his things set up a certain way, and he still won't want you to touch anything." I looked at Zach via the rear-view mirror to see if he understood. He was nodding his head, but I know it is a tough concept to swallow; one that even my husband and I are still coming to terms with. Ben is brilliant and wonderful, but there are things about him that are classically autistic and those things will not change. Zach will eventually move on to easily make friends, go to the prom, drive a car and play on sports teams. Those things may not be important to Ben, or may be impossible. In time, I know Zach will have more questions, and I will be here to answer them.

Next we talked about Joshua. Joshua has a movement disorder and developmental delays that are presumed to be cerebral palsy. The jury is still out on whether there could be more to the picture. He tends to look autistic-like at times, though seems more social than Ben. Zachary wanted to know if Joshua's brain worked the same as Ben's, and I had to say that I was not sure yet. I told him what I do know, which is that Joshua loves to play with "ZaZa," (babytalk for Zachary), and that he is happy. I told Zachary that even though Joshua has to work so hard to learn things, that there is no reason to feel bad about that. When I turned around at a light to look at him and saw tears in his eyes, I knew I had struck a nerve. My heart broke a little bit. My active and sometimes frustrating but also sweet and loving 5 year old feels sympathy and maybe a little guilt over a baby brother who struggles to walk, hates eating and has to spend most his mornings at either pediatric therapies or medical appointments. Like with our Ben talk, I know there will be more things to discuss regarding Josh in the future.

These are the moments of parenting that you can't write a guide book for. Even if someone tried to tell me what to do, I would still feel like I was running in a crowded street with my eyes closed. But somehow, I got through it, and I know I will again and again. Zachary's big hug at bedtime that night assured me that I must be doing something at least half-way right. I guess that is all I can hope for.

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.