I have been obsessed with autism/apraxia/SPD research lately. I don’t know why it just hit me so hard but lately it’s all I can think about. Cooper is such a mystery and doesn’t seem to fall into any one category.
So, I have been scouring blogs looking for Cooper’s twin and I can’t seem to find one. I keep looking for a social 3 year old with no words who has delays. No go on that end but I keep finding all of these amazing moms that are so much farther than me. And I usually, if not always, cry when I read their posts. They are so strong. They are fighters.
The way I see it, in my life, there are two parts: The diagnosis and the day-to-day survival. They are two very different things.
The diagnosis of one or all or any of these disorders is crushing to a parent. The child that you would die for suddenly has a label. Suddenly, the future you pictured is different. Not necessarily bad, just different. You grew this baby in your tummy and you love them so much it hurts and all of a sudden they are part of a ‘group’. And what if that group isn’t loved by others? What if they aren’t accepted? What if they can’t handle the struggles that are ahead of them?
And the worry is so heavy you don’t think you can hold it all up. Plates are spinning in circles above your head…therapy appointments, IEP, Preschool, Doctors, etc. There are CONSTANT questions about your child making friends and having a job and growing up. I call it the unknown.
And WOW, is the unknown brutal. You spend so much time researching and watching your child. Are they doing this and are they doing that? What category does that put them in? You can change your mind daily, if not hourly, about wanting a diagnosis.
Would a diagnosis make the day-to-day any easier? I honestly don’t know. I know it would help me towards acceptance and most likely help my overall well-being. But really, honestly, would it help the struggles. I don’t think so.
So, for me, the hard part isn’t an autism or a an apraxia diagnosis. The hard part is watching Cooper struggle to learn and adapt. The hard part is managing ALL of my emotions with this and watching what it does to my relationships. That’s the hard part that no one tells you about. And you feel how you feel…whether you like it or not.
You will be mad at the people closest to you because they don’t understand. You will be jealous of other people’s kids. You will be mad at your husband for not empathizing enough. And overall you will be so freaking mad at yourself for not accepting it faster. And you will be so angry that you wish your child was different.
So, I guess it’s the anger that kills me the most.