I’m usually the mom that says “I got this. Its no big deal. Im the one to push through it all and just keep pushing foward. I don’t yell much. I don’t protest much. I just keep going but then there are those moments in the quiet when something happens or when a song comes on the radio at just the right moment and it all comes crashing in.
Like today, after waking up and getting my special needs son on the bus and rushing over to the doctors office two towns over to figure out whats going on with me. I havnt felt good for a while now. My hair has been falling out in clumps when I wash my hair and I have been running exhausted for the last few months. I finally got brave and went to the doctor when I had a free moment and he did the full work up. “Rest…You need rest” he said. “your blood work is awesome for the most part except for one little thing… did you know that this shows you are getting over something viral?” I just sat staring at him eyes still blurry from sleep. I rushed from there to my favorite hang out to do a CPR course (I would later be told would not count and would have to redo), rushed to work, then headed home for the kid round up and to cook dinner.
I stood in the bathroom looking at the showering task analysis hanging in the shower with the radio on and that one song came on and it was over. I slowly sat on the floor next to the tub where my almost 11 year old son sat crouched on the floor of the bathtub drinking the water from the handheld shower head and put my head in my hands and cried knowing his therapists would be mad that I was letting him do this. This is not in the plan but then, I’m not his therapist and sometimes that will just have to be okay.
I thought about the kid down the street, I thought about all my friends in the same situations and I couldn’t help but cry harder. Prescription: Rest, Special needs Life: work, worry, work some more and worry somemore.
I talk autism a lot, but a lot of people don’t know that I have two children I call my “typical children” that have been diagnosed with a form of progressive hearing loss. When the Doctor came out and told me that my then six year old son was “a good candidate for hearing aids” I laughed. No seriously, I laughed right in her face. I thought it was a joke. She just stood there with this confused look on her face “No seriously this is not a joke”. This was followed by his sister failing a hearing test at school and me repeating the same appointment and her being placed in hearing aids as well. This meant a whole new journey. Different battles. Now, my son with autism has Pica and has a tendency towards rubber. Guess what hearing aid ear molds are made out of? Yup! Rubber. I cant even begin to tell you how many hearing aid ear mold we have gone through because he has eaten them. How many hour trips and $180 bills I have had to fork over to get them replaced before I finally gave up and said to my older son “if you can’t be responsible With them you can’t have them.” if that sounds mean please understand he is hearing enough, at this point, to make it and he has a special pair just for school that is hooked up to an fm system.
I try to sit still until I look over and see a mess and clean it. Then i look outside at our less than perfect landscaping and go out and try to mow the lawn as best i can in between door alarms going off and frantic checks to make sure my son hasn’t run away again. In my quiet moments i sit staring out the window at the neighbor across the street calmly washing his brand new truck and as I turn my attention to my Tricolor thirteen year old car that has made it through about 3 accidents at this point that weren’t my fault (no really they weren’t I have reports to prove it!) and I cant help but think what a metaphorical picture of my life that car is. Ziptied bumpers and taped headlights but still running like a champ. Only I know that underneath that fender its strength is compromised by the bent frame. That the zip tie is there because the metal is ripped and wont hold a bolt. Who knows what it will do in the next accident… lord knows it wont be that strong… and if I don’t change something soon neither will I.
I laugh with my friends about silly things that happen through the day because if I dont spin it in some way to make it funny I cant cope with it. Humor has become my mechanism for survival.
The other day as i sat in the waiting room with my son with autism i knew everyone was looking and staring. I noticed his pants were on backwards and i knew the couple across from me was watching with interest (no judgment it was not a condescending look) and i just said knowing they could hear “oh buddy your pants are on backwards” i heard the man chuckle and i just looked up and said “well, he dressed himself and Im proud. Now a days I pick my battles” and the couple smiled warmly and the man said “sounds good to me”. Of course this was before the meltdown down the hallway towards the room where i was to get my blood taken that left all the nurses just standing and staring as I wrestled him into the room hoping and praying he would sit still long enough just for my blood to be taken… Thank God he did and after all was done he sat staring at my bandaid and said “band aid” and the nurse gave him a sticker that he immediately put in his mouth and ate. I just smiled as the nurse looked at me with a look of both perplexity and compassion. I took in her look and walked out saying “good job buddy” as everyone stared at our backs in silence as we exited and the door closed behind us leaving a wave of “i feel so bad for them” thoughts in our wake.
That’s a day in the life. That’s how it always goes. sweaty palms. sweat soaked shirts from fear that sometimes comes out of no where. A psychologist on first glance would probably say I have generalized anxiety disorder and hand me some form of a benzodiazopine like ativan or a xanax if they are old school but truth is the anxieties I have are real. They are not unwarranted. He will run. He WILL eat things he shouldn’t. He WILL trust people he shouldn’t. He WONT tell me if he is being abused he wouldn’t even know what abuse looks like. He WILL run right out into a parking lot with out a care. He WILL get on the roof, hes done it. He WILL touch a hot stove, hes done it. And that’s what people on the outside don’t get. The constant fear and anxiety. The constant worry about safety that never subsides. School does not give me a break, most days it gives me more worry. Then there’s therapy and the constant questioning of whether or not I am doing the right thing. The “what if” questions as you watch the therapist pressing him as he screams and bites them. “What if they are causing this behavior? What if he does hate this? What if this is more harm than good?”
Special needs parenting is torturous sometimes. It’s a true lesson in endurance. Its a lesson in what is truly important and ya know right now pants put on the right way is not important to me. Its a test of mental and emotional endurance. Its ups and downs and tears near bathtubs when you are going apart from the ABA plan. Its three different IEPs every year. Its an act of love. That’s the only thing that gets me up in the morning. Its knowing that I am not in this alone. There are so many out there living this life and finding Joy in it. A joy that most days I can find. But today, Today is my “my life is special but I’m crashing” day.