Falling Through the Cracks

Do you ever get the impression that you are falling though the cracks in the system?  Like you just don't fit?

I've been forever getting that impression for the services I need and for the ones my son needs.

Falling through the crack

I have recently found out that my son qualifies as autistic.  As such there are many programs out there available.  Mostly they focus on the younger years (4 and up) as early intervention is key to development.

Unfortunately, when these services would have been needed and a godsend, they were not available to me as my son did not have a proper diagnosis.

The system did not have the means necessary to provide a proper diagnosis, they gave him other labels which did not quite fit and were not enough.  Some of those labels became self fulfilling prophesies due to the lack of proper diagnosis and lack of proper services.

They told me that he was ADHD and nothing more, yet he did not behave like "just an ADHD" child.  When he started acting out because of the bullying and his inability to adjust to the system, they said he was ODD.

But when he got the ODD diagnosis, he did not behave like an ODD child (except at school where he was in crisis at all times)

The whole time I kept insisting that there was something more.  I thought maybe it was bipolar at it's early stages, maybe a bit of giftedness as he did show some particular aptitudes beyond children his age.  It never occurred to me that he might have a learning disability.  It also did not occur to school personnel until he was 13 and his learning disability showed up during other evaluations.  He was coping so well, due in part to his giftedness.

As a gifted autistic child with a learning disability he could and should have had services available to him in school, adapted to his particular needs.  He could and should have had services in the community to help him develop and adapt to society better, but due to lack of resources in our medical community and my lack of funds to have him assessed in the private sector, everything that was could and should have been available to him were not and he fell through the cracks.  I think there were a lot of services not made available to me because I was a single mother who worked. (Less time energy and no back-up)  By not being on welfare I did not qualify for the assistance to get some of the diagnosis done, but I did not make enough money to pay for it.

When he was 13 and we were almost at the end of our rope, they finally suggested that consult with a private firm for a full assessment.  By this time I also had the money to do so.  We finally got an explanation and access to the autism spectrum services.

BUT

He is now too old for most services, too aggressive for others, I now make too much money for assistance yet don't have enough to pay for them.  He is too un-adapted for some places yet too independent for others.   He is too much this but not enough that for any services that are available.  If he fits, it costs too much for me to afford and I can't qualify for financial assistance as I make too much money.

Falling through the cracks again.

Then there is my daughter and financial assistance for school.  She is also falling through the cracks.  When she was growing up, I was too poor to put much money away for her.  Lets face it, when your annual income is $13, 000, you can barely keep food in your kid's mouth and clothes on their backs.  $10 a month seems like a lot.  Per child!  I know i I had not been smoking I would have had more money to put aside, but still not a whole lot.

When she applied for financial assistance, they looked at my CURRENT income and decided I made too much money for her to qualify.  Of course if I had been making this amount of money for YEARS, and bought a house when you could buy one for $45, 000 instead of $180, 000, it would have been easier for me to put money aside AND also have enough money now to help her out with her studies.  Unfortunately I have only been making decent money for the last 5 years (above poverty level).  During those years, rather than   putting money aside, I helped out another single mom, then got stuck with a massive tax bill due to someone else's fraud.  Even though I made more money during those years, I still could not put much money aside.  THEN she went to university.

Falling though the cracks.

As for myself.  I am too healthy for disability programs (according to doctors I have seen so far) yet too disabled to live a full happy life.  I don't qualify for various assistance because I am either too rich or not disabled enough.

I need help cleaning up after my son, I need him to have some therapy or training to better control his obsessions and emotions and to wash himself.  I don't need someone to take him out for 3 hours a week, I need someone to come here 3 hours a week and help me with his laundry and cleaning his room.

I need someone to help me do dishes at least once a week and help me vacuum.  I am not asking because I am lazy, I am asking because between work, my son's inability (or unwillingness) to clean, my daughter's difficulty with picking up and my exhaustion and pain, taking care of all of that is beyond me.

These services are not available for someone like me as I am not disabled enough, make too much money and my son is not severely autistic enough, too violent and too old.

Falling through the cracks again.

Thanks for reading.