The sibling aspect
Dealing with the sibling aspect while being a parent to a special needs child.
The reality of having two complex children has been hitting me hard lately.
Along with Isaac having Noonans syndrome and dealing with the challenges of that, we have recently been made aware of Will having SPD (Sensory Processing Disorder)
It’s something that may not seem like such a big deal, or a diagnosis that some would even call “made up”.
But I’m here to tell you that neither is the reality. The reality is that we have known Will has been struggling for quite some time but only recently decided to take him to see an incredible OT who very gently brought the news to us about Will’s disorder.
What SPD looks like….
SPD was originally called Sensory Integration Dysfunction and it is a neurological disorder in which the sensory information the individual perceives results in abnormal responses.
Now to what that actually means for Will and for us….
Will does not process what he may hear or see or feel like the average person may, so if he hears something like a train, instead of jumping up and down and getting excited, he plugs his ears and clams up. Also, when we are somewhere new with new people and new smells and new surroundings, he gets very overwhelmed and panicked, usually resulting in meltdowns that can sometimes last for over an hour. He’s not a big fan of getting dirty, or feeling new textures. Something as simple as just being ok with going into a pool or lake, even though he wants to very much, and knows it’ll be fun, and has been excited to do it. He sees cousins and friends doing it and wants to himself up until the point of actually stepping in.
Now take all these things that we have been dealing with since he was only a few months, and add getting a new sibling. Not only a new sibling, but a special needs sibling that has weekly doctor appointments/traveling/life flights/surgeries/etc. Add on top of that parents who are just trying to hold it all together. Will has been put through more then any 3 yr old should have to be put through and all of this has given him PTSD and constant fear of us dropping him and leaving for who knows how long.
This is Will’s new life now just as much as it is ours and with it comes being left with family and friends (even though they are absolutely incredible) more then I like and most assuredly more than he likes. It means things like having to put up with his OCD mom practically bathing him in hand santitizer like a crazy person because I’m trying to avoid another trip to the ICU.
It also means that he has next to no regularity in his life (new moms please do not ask me if I have a set schedule for my boys).
Having no regularity in his life combined with SPD means that our almost 4 yr old is not potty trained either BUT has been so close 3 times now only to be left once again.
What would I say is the hardest part of having a special needs baby?
My husband and I would both agree that it is having another kid as well.
And what would I say is one of the best things about having another child on top of having a special needs baby? Just that! Having Will has been one of the best parts about Isaac. Will brings the comic relief to our family and he makes Isaac laugh louder than anyone else can and he shows us that it’s still ok to laugh and be young at heart with all we face each day.
With how challenging Will is at times, or as his OT gently and beautifully puts it “He’s just a very spirited child”, having not one but two complex children is hard, but we would not even dream of changing it!
I have complete belief that although it is so incredibly tough right now, I believe that in the future, it will make Will into a very caring, sensitive, tough, beautiful soul and for that I am thankful.
originally posted at www.thisisreallife.me