Last week was a hard week for me. I had several meetings and updates from Lucas’ service providers. I also had a meeting for my older son to discuss ADHD accommodations in his school. One thing I have learned so far in this journey fighting for disability rights and inclusion is that there are seldom times where things come easy. Services have to be fought for. Diagnoses have to be fought for. Your child’s rights have to be fought for. Insurances have to be appealed. There are endless evaluations from developmental disability service providers, psychologists, doctors, special tests like EEGs and MRIs, and therapists. Assessment after assessment. Result visit after result visit. You go to test after test. Doctor after doctor. Switch doctors. Second opinions. Medications. Change medications or dosages. Continue to vaccinate or not? Another product is suggested that could help a lot, but it costs 500 dollars. Social security, disability, and Medicaid applications. Endless forms to prepare to apply. We make too much money anyway, but we are supposed to apply in hopes the government will help with the excess financial and medical ‘burden’ on us. I admit, just typing this list makes me feel nauseous, like the mountain of weight on my shoulders is too much to bear. It doesn’t even stop there…
The providers all seem to say indirectly:
Here is a list, that is not comprehensive, of all the things wrong.
“Here is another way ABA could help your child, if only you could perfectly follow through with the parent training” Or else, you can spend 100 percent of your time dealing with the tantrums, which not following through consistently, will result in.
More plans get created to address his needs, yet they never seem to coordinate well with every other provider’s simultaneous plan.
Here are all your battles that you have to keep fighting now, will begin to have to fight soon, and/or will keep having to fight for the rest of his life.
While spending an exhaustive amount of energy with these matters, I am expected to also manage a job, and be a great mother to two boys who need a LOT from me. But… there is not enough energy to be all these things well. I fail often. I regret it. I question my choices. I try to rearrange priorities. But it all starts again the next day, or the next week. It isn’t fair. It isn’t going to get a whole lot better either. I need to learn to manage all of this.
And I know that I am the kind of person who figures this all out. I will figure it all out. I surrender it all to God on a daily basis. But there are times where I just feel defeated.
At one meeting, I spent two hours discussing the terribly long list of things Lucas needs help with at ABA… the eloping, the toileting, the using his words more, the sharing nicely with peers, the kicking, the biting, the tantrum intensities, the being mean to our cat, the climbing all things in our house constantly. We analyze and reanalyze. The BCBA in charge of his plan shows me data graph after data graph of how he has progressed, but none of it makes that much sense to me in the whirlwind of simultaneously trying to hold onto what he has been doing well verses how much work he still has ahead of him. I lose site of what she is saying to me, as I take notes vigorously to remember it later. I am really just staring at Lucas as he climbs up on the counter top again, wondering when is the ABA therapist going to get him down who is working with him in the other room, while I meet with the supervisor at the kitchen table.
The next day I pick Lucas up at preschool, where the special needs teacher runs up to talk to me, who herself is overwhelmed with a class too big for her to address each child’s individual needs well. I hope she is going to say something refreshing, but I can tell by the look on her face that she isn’t. She says “Lucas was acting a bit strange today. He was hiding under the class rug throughout the day when we were doing other things. During circle time, he wanted to be with his head on the ground and bottom up in the air, and wouldn’t change his position.” And, she looked at me and said “Come on buddy you can do better than this… Since he started ABA… blah, blah, blah…” And in that moment, I was in a bit of shock. Her words faded out, because I couldn’t believe what she was saying. Did I really need to know how she thought my son’s behaviors were weird? Ridiculous even? I mean do you know what autism is? It is partially defined by repetitive odd behaviors. I didn’t have the energy to say anything back. I disagree with her. She feels that ABA has not been great for his ability to participate in preschool well and tells me often.
I just can’t imagine why she thought I needed to hear those comments. Those are things for her to manage while she is with him. I came back with, well he is using a lot more words and talking in so much more detail, rather than having problem behaviors as fast, in relation to interacting with other kids. Yes that is true she smiled! How fast we are to point out all the things that “need work.” I am really tired of hearing the ‘not good’ stuff. Sometimes there are too many to take. I still have another son and a husband and my own health to take care of. I cannot bear the weight of the world on my shoulders and fix every quirk that Lucas has because the teacher thought it was a bit ‘ridiculous.’
I try and I try. I plan, and plan and redesign my plans. I schedule and change my schedule. And repeat.
Don’t get me wrong. There are plenty of amazing people who are helping Lucas alongside me. Some amazing therapists and specialists. However, there is something seriously flawed in the way all of these people interacting with this very special little human being and his mother, rarely think of saying, “Your child is beautiful. Your child is amazing. Your child did some wonderful things today. Your child had some wonderful communication attempts today. Your child had a precious smile today. Your child did anything worth praising today.” It’s like as soon as anyone sees me, who had been with Lucas before me, feels the need to immediately tell me all the things that went wrong.
I am really tired of it.
So I will say it now to remind you, to remind them, and to remind myself. My child is amazing. My child is a blessing. My child has a super sense of humor. My child has the best, tightest, warm hugs. My child gives the most delicious kisses. My child has made immense gains in self control and speech. He has the most contagious lovely laugh. My son has the sweetest eyes when he looks at me and smiles, excited and fulfilled to see me. My son has a tender heart, always caring when his brother is getting in trouble or is crying about something. My son is very intelligent. My son cares about having friends. My son just wants to be loved and accepted. My son is worthy of that. I won’t let the world convince me of anything less. And, I have got your precious back, I promise you.
And who shall sustain me while I sustain you? I give all thanks to my Father in Heaven, for His love revives me. When I feel like the darkness presses in, he restores my sunlight.
And a special thank you to Omar, my precious other child, who designed this Blog’s headlining beautiful little play dough sun and inspires me daily.