Sometimes, I feel guilty that “A” only has mild autism when I know so many people who’s children have so much more than mild.
That word “only” feels silly in that sentence. Autism is autism and every child is different. Each child and family have their own struggles. But I still feel guilty when I am having a hard time or I am crazy with fears and worry. It could be worse, and I know that, and I feel like I should spend my time being grateful that our struggles aren’t too severe.
But just because “A’s” symptoms aren’t severe doesn’t equate to “no struggles”.
Ever since the incident with “A” and the forklift I have been in a very down place. My worry has increased. My fear has increased. I am second guessing every single thing we do. And I feel like every day autism kicks me in the face and laughs.
But it just isn’t “A’s” struggles. “B” also has struggles, they are just completely different. I have two children, they are 2 years 8 months (almost), and they both have special needs. My whole day revolves around therapies and making sure I am working with each of the boys on his specific goals. At the end of the day I feel like I have never done enough. I see that invisible window that the therapists and doctors all talk about. I see it in my mind and it is closing and I have to hurry and do as much as I can before it shuts. Early intervention is the key! Push Push Push! I am assured that the window of opportunity is much bigger than I think it is and that it isn’t closing any time soon. But I can’t let up.
I see “A” struggle to connect. I see “B” frustrated because he can’t make himself understood. The tantrums are getting worse and I know part of it is because they are 2 years 8 months old. But I know part of it is frustration at the world. “A” is frustrated because “B” messes up his lines. He is frustrated when we change up the expectations because it is time to take it a step further. He is frustrated because I am not doing it right. Only…I don’t know how to do it right because his little mind sees things differently than my mind. “B” is frustrated because I say no. He is frustrated because he is trying to tell me something and I am desperately trying to decode his gestures and sounds and figure out what it is he saying. He is frustrated because I can’t and he gets angry and gives up.
Our speech therapist assures me that my worry over not doing enough means that I am a concerned and involved parent. That I want the best for the boys and that I am trying so very hard to do all the various things for each of them that need to be accomplished.
Mostly I feel like no matter how much I do it will never be enough. I can’t make the autism go away. I can’t fix the connections inside of “B’s” head so that all those words inside can finally get out.
I am teetering on the edge of the cliff and I feel like I might fall at any moment. I have two little boys who are quickly closing in on 3 years old and neither one of them can hold a preschool conversation with me. Sure we communicate with the few words we have, with gestures, with pictures and signs. And I am pretty good at anticipating their needs since we live on a pretty inflexible schedule. But I really wish they could talk to me like other almost-3-year-olds. Yesterday or the day before “A” was upset and I asked if he was mad. I knew he was mad but we label everything and encourage them to understand. Through his tears he said “Yes….mad”. I have no idea if he was just mimicking my words or if he was finally able to have a word to express himself. Very few of “A’s” words are spontaneous words. Usually they come from a prompt, like when I ask if he wants an apple or pear and he looks them over and says “bapble”. Or when he drive through every single intersection and the light is green and he sees the green light and says green. All labels. No requests. No expression of opinion. Not really anyway. And then there is sweet “B”. His preschool teachers swears he said trashcan (the word of the week at preschool). He struggles to say the word “bus”. I have to prompt him and then he can get out “bu” and “s”…but always with a pause in between because his motor planning won’t allow the sounds to flow together to actually form the word. I know he didn’t say trashcan. I don’t blame her. I think she just got him mixed up with another child. Our play therapist said she almost made that mistake on Thursday because there is another little boy in class who sounds very similar to him.
The thing is…special needs…whether severe or mild…are a roller coaster of emotions. The bad days are worse but the good days are more sweet. Sometimes it feels like a year ago that “A” was diagnosed. In reality it has only been two months.
I told the speech therapist that it is a bad time right now for me. I told her that I don’t think I have really dealt with the emotional part of everything because I have been so focused on helping the boys. The funny thing about emotions is that you can only push them aside for so long. One day you have to deal with it.
You know that cliff I mentioned. I know I won’t fall over the edge. Even as I stare out into the void I feel the strength of 4 little hands tugging me back…keeping me from falling. I will never fall because they are there…holding me steady. They are my strength. And even at the worst moments, when I feel the most lost and overwhelmed and scared…it only takes a hug and/or a kiss from one of my precious boys and everything is okay again. At least until the next time. But it is okay because you can’t run out of hugs and kisses.