I think the thing I am struggling with currently more than anything is the time it takes to try to do the best possible for Matthew. See, everyone seems to agree, what matthew needs to be as successful as possible is residential programming. Unfortunately, the avenue to residential programming seems to be non existent. It isn't like you find out what to do and then step by step go through the process of finding the right program. Instead, everywhere I turn there is a dead end. Quality programs have been closed due to budget cuts. I have spoken to the hospital, they don't seem to have a list of program options. i have spoken to the service coordinator, he does not have a list of program options.
Our family therapist called the intake worker at Parson's, a local program that helps children and families, she said that most of the programs have closed for children with developmental disabilities. It is simply not possible to afford to keep these programs open, there is no money.
Today I had appointments to apply for Social Security Benefits for Matthew and David. Apparently, for children with life long disabilities, there is a program that will give the kids SSI benefits. My hope was that if Matthew qualified for SSI that I could then afford to purchase more respite hours for Matthew which would provide more support for Matthew while he is at home. Sadly, none of the 5 people who told me I HAD to apply for this told me that my income would disqualify the boys for coverage. Even when I spent over an hour on the phone with the people from SSI to find out if the boys could qualify for I was told they may qualify.
Imagine my frustration when I took the day out of work to spend the day at Social Security, and no sooner did I walk in, then I was told that my boys didn't qualify based on my income. Now please know, I am the director of a not for profit child care program. My income is far from fabulous! However, if it is an easy formula that tells SSI whether a child qualifies or not, isn't it possible that this formula could have been run through BEFORE I took the day out of work, and spent 10 hours organizing all of the boys files and filling out a million forms. I had to tell SSI all of the doctors the boys have ever seen, gather the names of all of their educators, therapists, dates of all doctors visits, gather contact info for anyone who has ever worked with them, and it was all for naught! Talk about frustration.
In addition to all of this, our morning once again started with Matthew having a tantrum. He has only been home 7 days, and yet this morning he again refused to get on the bus. I called a friend to come and get Jacob, and then I spent an hour at home with matthew helping him get calm enough to go to school. Finally, he got in the car and we drove to school. No sooner did we get in the parking lot, and he again exploded. He refused to get out of the car, he refused to go into school, he then refused to go into the classroom. The principal was out of ideas. She had no idea how to help get him ready for school, so I suggested that I had just heard of a new school counselor who was working with the Mobile Crisi Unit. She put a call into the Mobile Crisis unit, again, the focus on CRISIS- as in person having a MAJOR problem. PERSON IN NEED OF IMMEDIATE HELP. and guess what, she was told that there was no one at the Mobile Crisis Unit who could help us, they were busy!
I then suggested that since Matthew still wouldn't go into school, that maybe she should call for the safety officer of the district to see if he could help us get Matthew into school. By the time the safety officer got to school, Matthew had finally settled and was ready to go to his classroom. Because he had been dangerous when the bus came this morning, the prinicipal wanted the safety officer to remind Matthew of bus safety, which the safety officer did and then Matthew went on to school. I then asked the safety officer what else I should be doing- as it is a state law that kids have to go to school. This year, while Matthew has been at home, every single week there has been a day when he would not go to school and it has taken me over an hour to get him to school and into the school day each time. No working parent has time for this. It is Matthew's disabilities that create this problem. We have to come up with some sort of protocol as to what will happen if Matthew will not get on the bus to go to school.
I am not sure what the next step is, I have no choice but to keep plugging away to see what I can do to find sucess for everyone. I am thankful that there was no violence ths morning, just tantrumming and anger on Matthew's part. That is a positive which I am thankful for, however I need us to find a path without dead ends. There have to be answers, because one can only bang their head against a brick wall for just SO long before the wall falls down.
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