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 as he slept peacefully beside me as I surfed on my iPad, all was quiet. We are 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 a 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.
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 tic 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 mom’s 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.
Stephanie from Mommy, for Real
Janine from Janine’s Confessions of a Mommyaholic
Kate from Can I Get Another Bottle of Whine?
Dawn from Dawn’s Disaster
And if you liked this post, which of course I hope you did, cause you did get this far….could you click that little mom button? Thanks so much!
Jen Kehl 
This is truly a great reason to blog. And although my girls aren’t special needs, I too have one that loves to sleep with me and another that has been battling being sick with colds, fevers and even RSV pneumonia) this past winter and even this past week she has had another fever. So, I know the life of just being a mother and worrying about your kids. And from that vantage point, I too need something that is just for me and an outlet of sorts. And you are so right this is it and truly works for me, too. Thanks as always for linking up with us!!! 🙂
Janine, thank you, my son had RSV at 14 months, and pneumonia at 5. We battle that stuff too all the time. Sometimes, that’s just your kid, but you do what a mom does, right? 🙂
Wow, Jen. Glad you powered through not feeling like you wanted to write because this post is amazing. Great job. I think you’re doing a lot of moms a big favor by sharing Isaiah’s special needs (love how you phrased that) and also sharing about you too and reminding them that life can be fun – is fun!
Thanks Kristi! I really wasn’t going to play, but then he woke up, and was so funny! I knew I needed to write 🙂
I so appreciate your commentary about what having a child with special needs means. I, too, have a sweet boy with Sensory Processing disorder. He also has many allergies, allergy induced asthma, as well as apraxia of speech. He has has had almost three years of occupational therapy and that has helped calm him a bit, and he is better able to help himself if he needs sensory input. The therapy has helped some things, yet not others. And now I realize that that’s ok. My son has such a sweet soul, and his spd is part of who he is. Yes, he has special needs, but I hopei am teaching him that those needs don’t define who he is. I enjoy reading your perspective, and sometimes feel like you must have a secret camera in my house because some of your posts explain what has recently happened in my home.
Thank you Melanie! It is so nice to see when other people are going through the same things, it just makes you feel more normal. That’s why I struggle with the term “special needs”. And you are right, I think their issues are what gives them the quirks that make their personalities so awesome!
Yes. This is why there are so many mama bloggers. Because there is power in connection–and freedom. And sanity.
It’s also, I’m guessing, why you homeschool. We can chat about that another time…
I am so glad you felt inspired to write this! Perfectly stated. I love that your son said confounding. He sounds like an amazing character. And I’m so glad you blog.
This is such a revealing look inside your life and your reasons for blogging. I feel like I have such a better sense of your son, his challenges, his personality, and your life. And as someone who has written a lot about homeschooling, I would love to talk to you about that sometime too!
I didn’t know your son was SO smart- smarter than me. Confounding! I love it!
Oh Kate, you’re plenty smart!
The more you tell me about Isaiah, the more fabulous I think he is. And the apple doesn’t fall far from the tree. So glad you blog so I could get to know you and your amazing, special son.
Thank you Dana! I am glad I found you too!
I’m sure there are tough moments when you feel like chucking it all in (I understand most mums feel that at some point) but all I took from your description of your son and his (whatever they are) special needs is that he sounds like an absolutely AWESOME young man. I especially love that he loves big words (and uses them).
You’re right. I have tough moments almost every day, but then he says or does something that shakes me out of it, and I realize I am truly blessed!
Sounds like I need to meet this kid! Also, I had to look up “confounding”…
Erica- I wish you could be his Nanny!
Oh my gosh, Jen, what a sweet post. What a sweet, sweet post!
Thanks Shay!
“I needed to create; but I also needed to share.”
(perhaps out of the context it was written in) this phrase says everything about why I blog… damn! I could have saved myself a lot of head-banging over my (contribution) to this week’s FTSF!
..of course, I would have had to have thought it up… it’s always those little details that trip me up.
(hey, this is the longest it has taken me to get through all the Post and comment on the Posts that I enjoy…I did make before midnight though!)
see ya tuesday, yo
The best reasons in the world to blog…for the kids. 😉
he has, quite possibly, the sweetest smile, especially in his “burn your house down” pic. I had never really gotten the whole story on his challenges, and this certainly makes my awe for you only grow. and i’m glad you blog. 🙂
Thanks Miss, I am glad you blog too. What are we doing up so late???
A great reason to blog, find answers, not feel alone, find support, and bring awareness. We all want to know we are not alone, we all need to be heard. (HUGS) You have a special little guy! Think my son would get along with him very well.
You are so right Dino Mommy!
Wow… What an awesome Post!!!
Your Love for “Little Man” Shines Brightly here.
I love the pics.
Have a great weekend, Slu
Thank’s Slu! Hope you had a great weekend, maybe see you tomorrow for Twisted MixTape 😉
Your writing is beautiful. Your son is lucky to have you. Stopping by from SSS.
Thank you April! I am lucky to have him too 🙂
This is amazing, Jen. What an incredibly touching, from the heart post. I feel like I know and Isaiah through your perfect description,I also feel like I know him through my Ben. Ben doesn’t have special needs, as far as I know, but his personality sounds so much like Isaiah’s bigger than life one, including the big words, the talking to grown ups and leaving a lasting impression, including the stand up comic. What a wonderful post from a mom’s heart, yet I feel like it’s entirely subjective. LOVE.
Katia I hope you’re feeling better!!! Thank you so much for your sweet words, these boys of ours are special, aren’t they?
Sorry, I meant objective. Can you tell I’ve been up all night throwing up? (a little Monday morning TMI).
What a beautiful story. Everybody needs an outlet, but we see into your life a little more with this description.
Thank you Natalie!
At least he has the right mom, one that loves, listens, and lives for him.
Thanks Lance, that’s what I think too.
Jen, I’m late to the party but I just wanted to let you know how touching I found this post. You and Isaiah are lucky to have each other.
Thanks Jean. You are so awesome, you can come late to my parties anytime!
Wow! Thank you so much for sharing your blog! My 2 year old has eczema and it is one of the reasons why I don’t get enough sleep. It’s due to the itchiness he encounters at night. I am getting ready to get hi tested to see what else can be causing the flare ups. Like you, my son has special needs but he is also normal! Thanks for stopping by My Favorite Posts SHOW OFF Weekend Blog Party 🙂
Jessica
The Wondering Brain