Now that you know more about my boys and some of the struggles and fun parts of our daily lives I thought I would tell you a bit about me. How I feel on a daily basis, what I think about when I lay there at night.
There are so many things that go through my mind, sometimes good but a lot of times not so good. I am not saying every mom and dad thinks the same things but through listening to many other parents out there, I know there are many that have the same thoughts as me.
Having two boys on the spectrum I constantly worry about things like, “Will they fit in? Will they get made fun of or get bullied? Will they have any friends?” It really does make me sad when I see Ryan playing on his own most of the time. I hope one day when he gets older he will have even one close friend he hangs out with.
I know he gets included with his peers in his class and most of the kids in the school are great with him but he doesn’t really play with them. He’s happy on his own doing his own thing. And that’s just what we are used to with him. But what I want for him so badly is to have someone he talks with, plays with, texts with and just does normal kid and teen things with.
Will he ever have that? I really don’t know but I think about it all the time.
Seeing Cole so social and constantly having friends over and going to their house makes me so happy and I just want that for Ryan too.
Getting ready to go somewhere is a process too.
An event, an amusement park, Canada day celebrations, etc. We have to know that we might have to leave before we are ready. There might be a meltdown on the ground in the middle of it because he had to wait in a line that was too long, or had to get out of the bouncy castle when he wasn’t ready. People will stare at the kid screaming and crying and maybe think, “Who is that brat?” But we’ve gotten used to the looks and you learn to just ignore it or sometimes you feel the need to say, “He’s on the Spectrum.” I will even wear an autism shirt on myself and Ryan when flying somewhere in hopes people will see it and understand.
Another thing I find myself doing and it makes me feel guilty thinking this way is, when I see other kids his age playing at the park or doing things with their parents and I see how much more freedom they have, I get jealous.
Their kids act like a typical 9 year old. They can go sit at the park, trust their kids to play, stay in the playground, come to them if they need anything and typically get to sit, relax and keep an eye on them, while maybe getting to chat with a friend or another adult there.
My time at a playground, especially a busy one, is very different. I have to follow Ryan around everywhere he goes. Making sure he doesn’t run for the road or climb up somewhere he shouldn’t or do something dangerous. He’s a bit better as he is getting older but there is still no sitting around chatting and not constantly keeping eyes on him. Thankfully we have two smaller, fenced in parks that he likes to go to that we can be a bit more relaxed taking him to. But I still get that tinge of jealousy thinking I wish my kid was like that.
Worrying about someone bullying them is a constant thing I think about. Will they say things like, “Oh you’re weird you have Autism.” Or say that to their friends. “Why does he do that weird thing with his hands?” “Why doesn’t he play with us?” Especially as they get older. If someone asks them if they have Autism I don’t want them to be ashamed or embarrassed, I want them to be proud to say “Yes I do and that makes me cool!” I hope as the world gets more inclusive and understanding things will be easier for them.
The biggest and hardest thing I think about on a lot of sleepless nights is, “Who will be there for them when I’m not here?”
When AJ and I are gone, who will be their advocate, the person who knows exactly what they need when they don’t know how to express it to anyone else?
Who will they run to when they are so upset and only need a mommy or daddy hug?
I pray every night that I live to be very old and get lucky like my 100yr old Grandmother so I am around for all their milestones and achievements. I want to see them grow into adulthood and become independent and maybe meet someone and start a family of their own one day. I just need to know there is someone there for them when I am no longer there.
It breaks my heart to think of them needing me to figure out what will make the sad thoughts go away, to talk them through a meltdown and help them breathe and just to know what they need when no one else knows.
I know other parents also think this thought but one of the main differences is, will he be able to become independent and live a “normal” adult life? Will he be able to go on to school and get a job and do all those things you picture for your kids.
That, I do not know.
I can only hope it will happen and continue to hope I am the one that will be there for it all.
