We are swiftly approaching the one year anniversary date of when my little Robot boy was diagnosed with Autism. With that in the back of my mind I cannot help but reflect on what a cluster-fuck this past year has been. It’s no wonder I have had such a hard time even beginning to construct a sentence to put down here because so much has happened that I don’t even know where to begin.
A couple of months ago I had a conversation with a friend and she stated that she has witnessed me change dramatically over the past 2 years. I have to admit hearing that I had changed in a negative way hurt and her words have resonated with me ever since. I didn’t bother to ask how she perceived my transformation from who I was when Robot was just an infant to who I am presently because deep down I all ready knew what she meant. As painful as it was to hear I just knew.
I have grown to become extremely sensitive, bitter and resentful. There has also been a gradual but drastic decline in my self esteem. I use to be so confident and self assurred but I am just a shell of who I once was. I am now riddled with self doubt and inadequacy. I question every single action I take and think about all the inactions of others.
These are obviously not the type of charachteristics that one finds appealing and would definitely not boast about but that is where I am right now. I feel like I have been in the inner most bands of a perpetual hurricane for over a year now. I feel like I have been tied behind a mack truck speeding down the freeway at 100 mph and now I am left dizzy, disorientated, bloody and bruised. I am broken. I am extremely lonely. I feel so isolated and disconnected from the world that exists beyond the four walls that surround me.
I can barely breathe most days because there is no air and without oxygen the panic engulfs every fiber of my being and I become immobile and helpless and every plea for help and support falls on deaf ears. How many times do I have to experience a breakdown before someone intervenes and gives me the strength and support that I need to continue moving forward? How much louder do I need to scream “I NEED HELP!”? I’m drowning here gasping for air but nobody is throwing me a lifeline to reel me back in.
Although in many respects this can all be linked back to the suckerpunch of my two babies receiving Autism diagnoses within three months of each other but it is just that. A link. It is only the stem from where these feelings are manifesting from. The root of my problems is largely due to my disappointment in a myriad of failures I perceived to have experienced over the past year.
How about I begin with the State of Florida whose team of Early Intervention experts failed my son by blindly turning there back on the elephant in the room? He lost months upon months of precious therapy and Early Intervention due to a combination of incompetence and an agenda to save money. If I didn’t put on my boxing gloves and go straight to the top of the food chain in Tallahassee he would not have received an ounce of therapy. I began seeking their help last March when Robot turned 2 years old because he was beating his head into whatever surface he could come in contact with. I sought their help because it was clear, at minimum, he had a speech delay. But he was denied services based upon their assessment tool and adamently refused to retest him with a different evaluation. I got the job done getting him into the program but my kid missed out on 6 months of valuable therapy so yeah I’m pretty pissed about that because they failed him.
I am also begrudging from the plethora of broken promises by so called “friends” who offered their help and expertise the exact day that Robot received his diagnosis but failed to deliver anything other than excuses. It is like I am living in the twilight zone because our lives are littered with Behavior Analysts since my husband, Justin, is employed at a non profit company that provides residential and behavioral supports to the developmentally disabled so we know people who could help us navigate this maze. People who promised to help us. People who had good intentions, I’m sure, but when it came time to deliver those promised services I heard every excuse under the sun as to why they were no longer available. I am stark raving mad that they didn’t follow through. I am disappointed as hell that these “friends” could not live up to their promises when they were bonded to their word that they would help us in everyway they possibly could.
I was duped into moving away from my home and friends under the false pretense and expectations that the move would be positive because it would provide me with more support from family and ultimately some respite which to date has not happened. To make matters worse it has been nearly 10 months since moving here and I am so alone. I have not one friend here that I can lean on for support. The one person that I made a connection with just moved out of state a few weeks ago. I have reached out to other moms from the support group but sadly the phone calls and text messages are never reciprocated. Friendships must be a two way street and being the new person in this place you would think that somebody would extend their hand and say I am here for you. You would think.
You would think that living in very close proximity to family members, as in they live in the downstairs portion of the house, they would be there for me. You would think that hearing your two autistic grandchildren having hour long meltdowns simultaneously that something might motivate them to offer some assistance when I am alone and have no other alternative but to try to handle it on my own. At what point will somebody step in and say “What can I do to help you?” Why is it so difficult to just offer some help when the shit hits the fan? Why isn’t anyone coming up to say “Hey, you know what? I would love to take the boys for an hour so you can take a shower?” I am just an afterthought. Providing me with some much needed respite, compassion and support is not even on anyone’s radar and I am so inexplicably hurt by this.
Why wouldn’t I be resentful and feel scorned after experiencing all of that? I am only at the very beginning of this long journey raising two autistic young children and need some sort of support system in place or I will end up failing myself and my children. I’m in survival mode at the moment but I can’t keep that up infinitely.
So much has happened.. I suppose starting here with my heart on my sleeve for all to see is a good place to begin.