Fifteen years later….13 of them living with hard core autism and I still cry. You’re probably thinking “well of course, we all cry. “ No, no….not the crying at baby commercials or because you just watched a tragic news story. It’s the crying that you think I would have “overcome” by now since autism is no stranger to my life. But today, I still cried that my non-verbal son with autism threw his lunch all over the floor causing my husband to lose it and then subsequently, I lost it, too.
He has done this before. He types what he wants for lunch and then for whatever reason, one we still don’t quite understand, he throws it on the floor so quickly that you cannot intervene. It’s lightening fast. Almost like he had been planning it from the moment the plate was put in front of him. This is trivial, I know. I mean, food on the floor? Deal with it. But it’s a much deeper pain than that. It’s the pain that my family and my son will forever live this very complex, exhausting and heart wrenching life . That my son will type one thing on his iPad but, mean something completely different. That he won’t be able to control his impulses like stealing food off peoples’ plates or touching random faces when we are in public. That some people will move away from us in restaurants and in church because he makes too much noise. And that a skinny little 6-year-old will make fun of him at the pool despite the fact that my 5’9’, 187 lb. son hears every word that kid says but can’t yell back at him.
Thankfully, some of autisms quirks have left us as my son has grown. I’m thrilled to not be crying anymore from the days of fecal smearing and continuous welt-producing pinches and scratches. That was brutal and it meant daily crying. Now, it’s “periodic crying” which on my lucid days I know means progress.
Many days there are no tears and we are so happy he put his own dishes in the sink (without throwing his glass in the trash) or that he managed a new skill with ease or, that he played basketball with the neighborhood kids. Those days are amazing and they fill my heart with such pride for how far he has come.
But today? ….Today I’m just going to cry.
5 comments… add one
Kathy quinn July 9, 2017, 3:12 pm
Thanks for sharing it is a roller coaster parenting kids with special needs. I know most parents feel this way but with special kiddos the lows are lower and more emotional because this is not a “stage” it is life as we know it … a good day is when my mind does not wander to what if . But you are right there are many happy days where there are no accidents, loving people that don’t stare . And the love ❤️ my younger son tells me every day I love u so much you are the best mom ever give me a hug . I am lucky he is verbal and can share his feelings. Though I will say nothing scares me more than when he says ” I have a surprise for you” . usually involves me cleaning up something 😜
Kristen Scott July 9, 2017, 6:20 pm
Thanks so much for this. My friend Anne reposted this on her FB page and I’m so glad to have found your blog. I worry sometimes in my own blog that I write about the pain, which never goes away (my non-verbal autistic son is 25) but that’s what needs to see the light of day if we are to get through it. I still cry too. And also laugh and find joy in things “the rest of them” may never appreciate. I’m with you!
Amy July 9, 2017, 8:23 pm
Hi Kristen. welcome to our blog! I write a lot about autism because it tends to manipulate my life a bit. I also have 2 other teenage daughters who live our pain as well. Life is mostly good…but, as you can relate, it’s really hard too. I’m happy to share and cry with you and maybe laugh too!
Donna July 9, 2017, 8:31 pm
Amy, with all my heart, I love you and cry with you
Laurie Moore July 9, 2017, 11:40 pm
You go ahead and cry girlfriend. Could you imagine if you didn’t? The autism journey is one helluva ride. We are truly blessed that our journey led us to you and your wonderful family. Jack was given to you and Bob for a reason. Embrace it. You will cry and may scream but the laughter and joy will pick you up. Love you guys!