There’s a System and It’s Failing

Yesterday as he screamed and tried to bite his therapist while aggressively holding her arms I paused for just that one split second before intervention and it was like a million flashes of the the many physical altercations during my years on the psych unit came over me all at once. I don’t know if I have some tinge of PTSD from my years and some of the things that I have seen or if it is a legitimate fear that someday that may be his future. I slid up behind him to help to calm him and as the screaming contiued as he typed “no” on his speech device and I died a little inside.

I am well aware, that there is only so much that I can do to prevent this as his future. I am well aware that there are going to be bad moments, bad days and thankfully up to this point I have been able to manage his small outbursts but as puberty approaches I am seeing that another chapter is about to be written and I can only write so many words. Someone else is going to write them and I am going to have to choose how to edit the side notes left for me to write. I guess that is the perspective that I am beginning to adopt as I am losing more and more control of him physically.

It is no secret to those that love me that I am beginning to struggle as once again my heart breaks in knowing that I am trying to save a boy that might not be able to be saved. I could handle the nonverbal years, I could handle the diapers at seven, I could handle the special needs classes, the specialty schools, the ABA, the therapists who didn’t care but here I sit as I feel more control slipping from my fingers.

I can handle just about anything. But in all my years and experience if the violence continues to increase and he starts hurting people I know that my protecting him will no longer be possible. I have seen him walk up to my daughter (his little sister), grab her pony tail and throw her to the floor. I am no longer able to sit the kids at the table together because for some reason this is the time for him to grab at them and kick them under the table. I feel like I am sitting right back at the time when i started noticing his skills decline. I catch myself fearing and wondering how far this negative behavior will go. Is this temporary? Will it resolve like many of his other regressive “sling shot” periods? Will this be the three steps back before five steps forward I am hoping for?

I have tried just about everything to keep him out the system. From ABA, to speech, to OT, PT, floortime, support groups and now we are beginning with CBD oil. The next step is medication which I have been avoiding like the plague. It seems the answers from the professionals are starting to drop off as he gets older.

Most resources are from the ages from diagnosis to 8 years old or so. From autism boot camps to even ABA therapy it seems that once our children get to a certain point things just drop off. The answers and the paths seem to wean. I am finding my friendship and support circles dwindling and I am no longer the one that people are seeking out for answers I am finding the tables are turning and I am reaching out to other parents In utter cluelessness head spinning from lack of resources. Again, I feel like Aiden is always at the cusp of autism research and resources.

From a 5 year fight until autism was forced to be covered by insurance to now there being coverage automatically for kiddos on the spectrum. I don’t know all I can say is Kudos to my generation of parents who are making these changes happen I just wish i was the generation behind us sometimes so I didn’t have to wait for everything. I look at parents now whose babies are getting  therapy and I feel almost jealous and excited all at same time. I have seen so many use therapy as babysitting and it infuriates me. I just want to grab them by their shirts and say “DON’T YOU KNOW WHAT YOU HAVE?! DON’T ABUSE IT! USE IT!”

I have digressed. As his skills ebb and flow I keep seeking answers and there are few to be found and its not that they are witholding information its that clinicians really don’t know. Sometimes, I get mad that everyone is looking for a cause of autism instead of investing in help for those affected. I get mad that I am watching parents out there struggling to find answers and help but are getting nothing but social workers that are contracted to help but don’t even know the system they are working in. Ethically trying to bite my toung as a social worker stands there asking questions but giving nothing in return. I can’t help but say “WHY ARE YOU HERE?!”. Truth is, in my experience, parents have more information than the “professionals” who sit at our kitchen tables taking notes and reporting to their supervisors and placing it all in a file to collect dust as the state says “we did our due diligence to help this family” while they stand there protected legally. And if you get that you are lucky.

I have been told that I have a social worker. Don’t know their name. Never talked to them. I think someone came by once when Aiden was three and asked some questions never heard back never saw her again. No loss to me really. I found our way.

This is a prime example of why the system scares the crap out of me. It is not set up to help. It is set up to get paid. Now, before I carry further, shout out to all of you amazing mental health workers who actually care, but there are many who don’t.  My lifes goal is to keep my kid out of your system because if my kid ever ended up in the care of this system I could never forgive myself and that would BREAK me. Its not equipped for autism. NOT EVEN CLOSE. It wont help it will just manage. I have a kid to save and to be honest the only thing he needs saving from its the system that awaits under the guise of help.

So understandably as the aggression increases so do my fears. My biggest fear is transferring any semblance of control to those not equipped to restore any form of control but rather to manage as best they can with short staffing and cut budgets. Remember this phrase always “If you didn’t chart it, it didn’t happen” and this phrase should scare you.

hugme

 

 

One thought on “There’s a System and It’s Failing

  1. This is so so tough. I’ve got no words except thinking of you. The U.K. seems to be similar in terms of the support seems to dry up past about the age of 9 or 10. I know that feeling of isolation as your support circle shrinks on a daily basis. Take care. xx

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