Raising Special Needs Kids

arkansasmama08
Our normal..
October 15, 2013 at 1:41 AM
The thought hit me recently, that I talk about my kids nonstop lol. Their Evals, diagnosis, therapies, and of course, all their funny, cute little quirks. But I wondered what I would talk about if my kids weren't autistic, if we lived the life I had expected for us. And then I realized, nothing would change. Sure, the words autism, therapies, and testing might be replaced with friends, birthday parties, and play dates. But I would still talk nonstop about my kids. I would still worry when they were sick. I would still wonder if I was somehow screwing them up for life. But they would still be my universe because they would still be the same, adorable little people they are, just a bit different. Which makes them, my normal. They may seem different and odd to others, but they're my normal. My sweet, smart, adorable little babies that are growing up much faster than I'd like! So, there you are. Welcome to the ramblings of my brain late at night. We may live in a different world than most of the people we know, but for us, their world is strange. And we are the "normal" ones :)

Replies

  • Mipsy
    by Mipsy
    October 15, 2013 at 1:54 AM
    I get ya!! For me though, if Ty were "normal", we would get regular dates in which we wouldn't spend the whole night discussing Ty and his issues and what tests we should do, medication refills, new meds to start, Dr appts, theraoies, school, meetings, all that crap. So some things would change for us at least
  • Jenn8604
    October 15, 2013 at 2:03 AM
    I always say my ds is normal.
  • SnapShotMama
    October 15, 2013 at 2:23 AM

    yup i agree! i find myself mainly updating fb of er trips, medication, tests and so on, while for my dd who is a pretty easy to deal kid her updates are on a book she just read, or her latest art work. But i have found some amazing friends through all of this for sure :)

  • darbyakeep45
    October 15, 2013 at 4:18 AM

    I totally get where you're coming from and I'm the same way!

  • jjamom
    by jjamom
    October 15, 2013 at 7:39 AM
    I have two kids who are highly capable and then my little guy who has SN. I live my life at the two extremes, there is no in-between. But, you're right, that is our normal, if such a thing as "normal" even exists!
  • mandee1503
    October 15, 2013 at 7:53 AM
    Yep we are the same way. Our hectic schedule is very normal to us now.
  • raysma07
    October 15, 2013 at 8:50 AM

    I really don't know any different so I don't know how it would be , My brother had alot of issues when he was a kid so I kinda grew up around always having some kind of doctors or therapies. in the mix . But this is our normal.

  • Linagma03
    October 15, 2013 at 9:24 AM

     This has become our normal too, especially over the last couple years.

  • DDDaysh
    by DDDaysh
    October 15, 2013 at 11:48 AM

    I have sort of an odd situation in which my life has gotten "more normal".  I started my parenting journey with a SD who had serious undiagnosed neurological issues.  Turns out it was cancer (neuroblastoma), but luckily contained in a single large tumor so surgery sent her into remission.  She still had severy systemic ataxia.  

    I was pregnant with DS during all of this, and my 9lb 9oz "hearty and healthy baby boy" didn't stay that way for long.  Before he was 2 months old he'd nearly died on us.  He was very prone to illness, though they never did figure out what exactly was wrong with his immune system.  It turns out his breathing issues were "just" severe asthma, which really isn't a terrible Dx, but when your child turns blue anytime he cries, or eats, or does much of anything it's hard to feel like the "just" should be there!  Add in some pretty nasty reflux and latching issues and...  his infancy/toddlerhood were NOT fun.  It wasn't as bad as some moms on here have it, but he still had some very severe medical issues that were life threatening at times.  

    But time passed.  Sadly my marriage didn't last, and while I hated losing my SD, the responsibility for her day to day care was no longer mine, which lessened the "abnormality" of my life.  

    And as DS grew, things started getting better.  His reflux subsided.  His asthma became better controlled.  And when we finally convinced an ENT to take his tonsils, the endless strep infections stopped.  His immune system is still a little wonky, but isn't really much worse than the average child these days.  And once we got that under control, he's basically ceased to even need asthma medication.  (We still have an emergency controller he uses maybe twice a year.)  It's almost like a miracle.  My baby who used to have so many meds and specialists I needed a binder to keep track of it all is, medically, a pretty healthy 9-year-old.  

    And yet...  He's severely ADHD, with mild Asperger's and moderate anxiety as well.  We do a whole other med regiment now to keep his brain functions normal to give him the best chance at a fulfilling life.  We have therapies and neuro appointments and 504 plans.  I have to parent carefully, because if I don't, he spirals downward.  

    But, it helps me keep things in perspective.  When I start getting overwhelmed at the fact that he, once again, had a complete meltdown because he can't figure out how to compromise with his peers, I have to remember to step back.  I have to look at him and remember that he's still here!  He's alive!  He can run around and argue with those peers without gasping for breath!  I can now worry about "interupted sleep schedules" rather than having to interupt them in order to give him breathing treatments!  Life is pretty darn good!  


  • Momof4AEMW
    October 15, 2013 at 1:18 PM

    "Normal" is overrated.  I'll take our ciaos any day! 

Raising Special Needs Kids