Who Are You Calling Special?

31 comments

So I’m sitting in my bed feeling fairly crabby, and really not interested in writing – although I had every intention of doing so. I am reading people’s work, I am considering watching some back episodes on my iPad. Then my son starts hacking. If you know me, then you know my son sleeps with me. If you don’t know me, now you know my son sleeps with me, he’s 7. I once wondered in a post; when it would stop. Trust me, that was tongue-in-cheek. This is why it won’t stop.

I hesitate to call my son special needs, because what does that mean really? I don’t think it’s fair to all of the other kids out there who are truly handicapped, are autistic, have issues that are crippling and unexplainable. Yet my son has special needs.

Tonight he slept peacefully beside me as I surfed on my iPad – all was quiet. We have been on the tail-end of a severe environmental allergy induced cold, that turned into asthma, fairly quickly. This time of year – that is par-for-the-course. Tonight, all of the sudden, his peaceful sleep and my crabbiness, were interrupted by a fit of nasty hacking. Hacking that I knew if I didn’t get under control would turn into puking – like it did two nights ago. I begin by rubbing his back, I don’t want to shock him into waking up. Sometimes just getting him to shift positions is all it takes. Not tonight. He continues with the coughing every minute or so, and I wait and watch. Is it slowing down? No, it’s not. If I don’t do something he’s gonna puke and we’re going to have another late night of bed-sheet changes and showers. So I rub his back a little more intensely and whisper to him, “Baby, baby, can I get you some of that purple medicine? Sweetie, can you hear me? Can I give you some purple medicine?” He barely opens his eyes and whispers, “Yeah.” This is a serious change from last year, last year it was always a battle. Once the cognitive abilities grow, things change – he gets it now. He knows this medicine will make him feel better, will let him sleep.

I go to the kitchen and get the medicine and a glass of water. I come back and think he’s still asleep, but I know it doesn’t matter, he must take the medicine. So I whisper “Baby, here’s your medicine. Come on baby, sit up so you can take your medicine.” He rolls over and sits up, and he says to me, “Mom, did you know in Temple of the Sun, Professor Calculus says he never wants to be in any type of Hollywood production such as this again?” He’s laughing. (This is from the Tin Tin series.) I agree that it is silly. I say “Take the medicine, boo.” He takes it, no problem. I hand him the water and he makes me hold it; so of course I spill some. “Mom, look, you spilled. You are always confounding things.” My boo. I love him, and I love his big words. He’s still coughing, so I grab the inhaler that lives next to the bed, and he does his two rounds. He smiles really big at me, I kiss him, and he rolls over and falls right back to sleep.

temple of the sun

Sometimes I think about the challenges he faces. He has sensory processing disorder; so he’s loud, he’s in your face, he’s extremely uncomfortable around noise, lots of people, rooms that are too dark, rooms that are too bright , he can only wear soft clothes with no tags and he still won’t eat anything creamy. He has a tick disorder that so far is considered a-typical, because although it is like Tourette’s, it is not Tourette’s. It get’s worse when he watches TV, it get’s worse when he’s nervous or excited. He has 13 food allergies, 10 of which are anaphylactic (meaning he can die). He is allergic to every environmental thing you can test for. Everything – even our Lilac trees, the cause of this week’s episode. He has allergy induced asthma. He is allergic to the cold (cold urticaria) and he is allergic to heat (cholinergic urticaria). He has controlled eczema, but that means it rears its ugly head when there is the least bit of irritation.

BUT, but…. he is perfectly normal.

When I think of what I would expect from a kid like this, I think of a kid like Millhouse from The Simpsons. Simpering, sniffling, sickly, scared of everything.

Have you met my son?

There is not a more adventurous, humorous, nerve-wracking boy on the planet. His vocabulary is spectacular, every adult he ever meets remembers him FOREVER. I can’t tell you how many people say hello to him in the grocery store, people I have no recollection of meeting before, but he also remembers EVERYTHING. They call it an eidetic memory, it’s connected to events and sensory experiences. Every person who works at every bank, grocery store, pharmacy, doctor’s office, wants to talk to Isaiah. They want to know what he’s up to, and man his stories always exceed expectations. All you have to do is go to my YouTube to see for yourself. There is a very small sampling of his antics, only because I am too lazy and tired to upload more. But there is SO MUCH MORE.

This is why I blog. I blog because I don’t know what special needs is. I know what special needs my son has. I know that his life is more fragile than the average child. I know that my fear does not help him. I know that creating drama around his issues does not help him. I also know that as a homeschooling mom of a child with the personality of 10 stand-up comics I need an outlet. As a one-time photographer, novel writer – but not finisher, I needed to create; but I also needed to share. I need to share with moms starting down any of the paths I am on with Isaiah, that everything is OK, don’t panic, don’t create drama, this is not about you. I want to tell people you can be strong, and life can still be fun and as the mom or dad of a kid with any one of these issues; you still deserve your own life. And so I blog.

31 comments on “Who Are You Calling Special?”

  1. He sounds amazing, such a gift from the universe. He is so lucky to have such an understanding, giving, flexible, strong mother, who doesn’t just define him by his allergies, or needs, but by what makes HIM actually HIM. He has many challenges, but he also has an amazing supporter. Those pictures are great, I love the one of him in the suit. He looks way too comfortable for a kid in a suit! hahaha great post.

  2. I’m so glad to have stumbled across this post today; it really resonated with me. Though our lives vastly differ- I’m sure- at their core, many of our reasons for blogging come from essentially the same place.

    Like all labels, “Special Needs” is tricky. You’re so right that really, we all have them to some degree, but which are qualifiers, and how serious must they be? One thing I can see from your post, though, is that your son is indeed, special. I’m looking forward to learning more about him.

  3. Heck! I feel like I will never forget your son and I haven’t even met him in person! He. Is. AWESOME!!! This post just makes me feel so happy and full of hope–for my own son who is older and doesn’t have exactly the same challenges as yours, but several that are similar. I sometimes need that boost of…joy I think is the right word…that comes across here. I tend to get sort of weighed down by anxiety about him from time to time, and that doesn’t help either of us. I was totally having those feelings tonight and them BAM I read your post and I feel uplifted.
    I think I’d like to be like you when I grow up (Yes, I know I’m older than you, but still) –Lisa

    1. You know Lisa, I think that happens to all of us as we circle each other, we just seem to somehow be in the right place at the right time to read the post we need to read. I am glad I was that person.

  4. Jen – I love this!! Isaiah is absolutely special ~ I LOVE that he uses big words. I find it fascinating, too, as a teacher, that students with sensory disorders or sometimes autism spectrum often have such fantastic memories. Such a gift.

  5. I read this last night and it made me think a lot. I keep reading about how parents want to make their kids special, stand out, rise above. But here Isaiah is with some incredible skills and perceptive abilities, yet he gets the “special” label, the one with *that* meaning. I know he is a handful, but it’s clear he is surrounded by unconditional love, which, frankly, is more than some kids can say – even the special-in-the-right-way kids.

    1. You know what Deb, you are so right on. Really. I think that’s why I get frustrated with so many parenting posts. Because not all kids are typical, and I think to myself, I don’t even have time to worry about that crap right now. Right now I have to deal with the fact that my son won’t get dressed or brush his teeth or touch the glue not because he doesn’t want to, but because he can’t!

  6. I’m a new fan of your blog and I love this piece, love, love. As the mom of a completely “normal” 4.5 year old boy, what I think is that EVERY kid is special, aren’t they? And they all have special needs. And what a wonderful world it would be if all of our children’s special needs were always met.

  7. Know what I call him?
    Fucking awesome.
    I love that you’re sharing this because…can I be 100% honest with you? … I feel awkward when I hear someone describe a person as special. I feel awkward too when it comes to my nephew, who is ridiculously smart in math and has such an infectious personality, explaining to people that he is “special”. I shouldn’t have to right? We are all “special” in our own ways.
    So thank you for being so open about this. xo

    1. Thanks Kimberly, you really hit the nail on the head. That’s exactly how I feel. My son can define any word an adult can, if there was a “definition bee” he would win hands down, but he can’t read. Why? Because he’s “special” is that what I’m supposed to say? Every kid is special, and every kid is different, and that should just be OK.

  8. I want the first word of this comment to be the exact one that originally banned me and spammed me from commenting. Because f#ck. Jen. YOU. This. Wow and wow and wow again. This is amazing. And you’re helping so so many people by writing from your heart with this. Whether he’s special needs or not doesn’t matter but in MY opinion, you totally qualify. Completely. In fact, when you said that you weren’t sure about whether you’re a special needs mom? I wonder whether I am, too. I mean, I know that I AM< but I don't FEEL like it so much of the time.
    Please tell me we're meeting in person soon. Isaiah is perfect. And f#cking awesome.
    And so are you.

    1. You crack me up! At least you learned your lesson Kristi. And thank you. I know of all people you would understand. We’ve been dealing with so much, it doesn’t go away it only changes, and that has to be ok. But I just don’t see the difference. We are moms. We aren’t a type of mom, we are the kind of mom who loves their kid. The end.

  9. First off, your son is adorable. 2nd off, I don’t think you ever have to defend anything that you wish to describe as your son. In this world of “special needs” I do use these words. Some mothers are offended by them and won’t use them. But my daughter (now adult) doesn’t have a nice tidy title and I need something, sometimes, to describe her. Special needs works for me. Your son sounds amazing. My daughter struggles in so many ways. Thanks for sharing such amazing pics. (I hope I didn’t offend you when I say you are lucky in so many ways. It was meant to be a compliment. 🙂 From one mom to another. )

    1. Linda I am not offended at all! I do feel lucky! I agree my son is amazing, that’s why the words are so confounding to me 😉

  10. He uses words like “confounding?” I already love him. 🙂
    Any time I read one of your posts about parenting, I feel like I’m curled up on a couch nearby and we’re sharing a cup of tea, talking about the real stuff of life.
    I’m so glad to have met you. 🙂

  11. I think you are a super mom who loves her kid so much and I will be following your blog. Thanks for the comment on my blog. I liked your story because I can see the love!

  12. Hey Jennifer, I was looking up my maiden name on google and came across your posting. Well sister, I can so relate to where you are at and what you are going through. My son Jesse who was born in 1996 also had sensory processing disorder, strabismus and learning disabilities .He also has an amazing memory and vocabulary. All I can say is these are brillant kids, they think differently, they learn differently they are think out of the box kids and they are going to be the change that helps to create a new world and we as their mothers have to be their fierce advocates and stand by them and believe in them when no one else does. I pursued vision therapy, auditory integration therapy, occupational therapy, speech and language therapy, kinesiology chiropractic , therapeutic horseback riding, craniolsacral therapy, physical therapy, therapeutic gymnastics etc. to help my son. Now he is almost 18, has his license, is a junior in high school and has an after school job. And there is no doubt in my mind that he is going to make a difference in this world. He has the heart , the drive and a tremendous sense of justice. So take heart you are not alone on this path of loving and advocating for a child who is special or different. He chose you as a parent knowing you would support and revel in his unique sensitivities and gifts. Hang in there, despite the challenges you face at this time, I know he id going to make you veey proud to be his mama!

    1. Wow! What an amazing coincidence! Of course Kehl is my married name (or maybe not of course 🙂 ) But how odd that not only do we share that but we share sons with similar issues. I have no concerns at all that this boy will be something someday! I always say he will either be a comedian or the president!
      And I’m not joking!
      I am so glad that you reached out to me! Hope to see you more!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s