I am constantly surprised by the immeasurable amount of patience that I lack when I watch the teachers and behavior therapists that work with Franklin on his Autism. Somedays the tantrums and lack of eye contact and non responsiveness are enough to make me lock myself in my bathroom and cry when my 2 kids are getting therapy all afternoon. But instead of crying I am now running my tail off on our treadmill. Franklin gets his ABA for 3 hours every afternoon after his 5 hours of school in the morning. Jackson my 2 years old is getting speech and ABA because we are an at risk family because of a sibling with a diagnosis of Autism. The get a variety of behavior from my kids good and bad, and most of the days now are good, but a bad day rattles me and (my neighborhood) I'm sure the therapists by the time session is over.
So half the time I feel like I have been a neglectful or stupid mom because all of my friends have kids that eat, talk, walk, move listen, look, hug and just do general toddler stuff. What did I not do right, or what did I miss as a parent that my kids don't do some of the simple things other kids do???? I don't understand what I am not doing for my kids that they are not getting these simple life tasks. Plus a lot of criticism from people mostly about why they aren't doing things like other kids, and why I do the things that I do and how I do things should be different and better for the kids. I put in my ear plugs and have learned to turn off ignorance and stupidity of others or what I would respond would not be very Christian.
So today I went to Franklin's class for and Observation and his teacher told me after our consultation that she wished other parents were like me. WHHHATTTT?????? I feel like the most miserable failure half of the time. I said "No", you have got to be joking. I feel like this huge weight is on my chest most days because I really have no idea what I am doing with Autism and all that comes with it. But what she told me was that there are a lot of children whose parents refuse in home services in their homes because it's intrusive to their life. After I picked my chin up off of the floor, I said to her "what do you mean?". Basically the response was that there are children in school with an Autism diagnosis that qualify for services in home after school that refuse them because it is too much of a time commitment. I was stunned.
First of all, I didn't think that turning down services that we pay for with our tax dollars was wise or even an option if it is something that is going to help my kid. This is the hand that God dealt us. Yes it is a huge life changer and sometimes it is an enormous pain in the ass, but I know from endless hours of research that the kids with Autism that have some hope for functionality are the ones that get this type of therapy. I knew and my husband knew it was necessary to make whatever sacrifices necessary to get the help that Franklin needs. I don't understand doing it differently, my only option was to research what needed to be done, put the things in place, and move forward, even if I feel like I was towing the weight of the world of sadness behind me. I follow the advice of the therapists, and teachers and put in my suggestions when I think things are detrimental or will be helpful. That is my job, I am his mom. My mommy gut knows what I need to do, and I plow through to help.
Our garage is a playroom, gym (where I am becoming quite the runner on our treadmill), occupational therapy station for us, I have swings hung, and the recommended toys and anything that is something that seems to help him I have done. I take this "mommy warrior" for my kids seriously. I don't understand refusing them help that they need to get better. I am not judging, but this is my way, I can't imagine doing anything differently.
Our kids were God's gift to us, and we have something that the kids need, and they have something that we need. I don't alway think that God made the right choice in parents for Franklin because I'M LAZY, I don't like this much work, I miss my social life, I hate being held prisoner in my house for the hours of therapy we get daily, I miss my friends, I grieve the loss of a "typical" child. But when Franklin has an amazing Autism day (which are much more frequent now) and now that he gives me hugs, unprompted hugs, and his smile that lights up the world and his laugh that is infectious I know why I do and will continue to do all I need to for him.
I felt a little bit validated by Franklin's teacher because I really don't know that I am "doing this right". No one knows in the Autism world, what "doing it right" is. Just because someone says something the loudest and has a big microphone doesn't make them right. You figure out what works for your kid and you RUN with it to help him. Sometimes the way people (including my husband) question how I do things and why I do things with Franklin makes me second guess my mommy gut and make me feel less than and unsure that what I am doing is right. But hearing it from someone that is removed that I am doing a great job and she appreciates what I do to help him took a tiny bit of my "noise" away from my brain, and for that I'm grateful. I'm gonna have to make her some cupcakes or something, that's a confidence builder you can't buy on your own.