As Matthew was turning 18 in July I knew I had to start preparations for having an adult son with disabilities. As hard as it was emotionally, I started the process for SSI for a person with disabilities and guardianship in early July.
Guardianship will allow me to oversee and have control over some of the things Matthew can and cannot do as someone over the age of 18. For example, if I have guardianship it limits Matthew's legal responsibilities if he tries to enter into a contract with someone. It also means that should there be any issues that Matthew needs with that are typically taken care of independently as an adult that I have the legal ability to help and support Matthew.
The process of applying for guardianship was somewhat easy but time consuming.....typical government paperwork. Collect 5 copies of this, have these 2 papers notarized, and then return it along with 6 copies of that etc. Then in the end of August a guardian ad litem came out to meet with Matthew. As we all know Matthew appears to function much higher in a brief interaction than he really functions and for me this was a huge concern.
As Matthew and the guardian met he was asked some really basic questions, "tell me about your summer", and he breezed through them and was charming. I had stressed that this would be likely with Matthew, and I thought the guardian understood, but she apparently was totally fooled.
In November I reached out for an update and was told in no uncertain terms that the guardian "works for Matthew and can only speak to Matthew!". I tried to impress upon her how much he didnt understand about the process and how I was just looking for an update and a time frame but I was just repeatedly told that she was waiting for paperwork and would be in touch.
Fast forward to today when a very kind lady, aka the guardian ad litem, called me back ready with a different story....apparently she had received all of matthew's school paperwork and I was right! He functions MUCH lower than he appears and he absolutely is a candidate for guardianship which is exactly what she will be recommending and will be put in place once we go to court in a few weeks.
What I want to know is who out there is excited to go down this path? In reality, if your choice is help your child apply for college or a trade school, OR apply for guardianship for your child, who would really choose guardianship? Don't all parents look forward to seeing their adult child grow up, go off on their own and start a family? What was I going to gain by applying for guardianship if I didn't truly believe Matthew needed me to play this role at least for now?
Just a few hours after this reaffirming call that guardianship was on track I received a call from someone from the SSI department. In July I had also started this process as now that Matthew was 18 he was eligible for SSI based on his disability. My thought is that Matthew should always work to whatever potential he can work, as many hours per day or per week as possible, but that he will be unlikely to earn a living that would allow him to support himself. Given this, he should qualify as a person with a developmental disability for SSI.
Once again it was so much paperwork. Truly it was a low point of parenting for me when I had to go into the SSI department and begin this process. It was a cold government process with little direction and for me this was overwhelming. That said, I thought I had gone through the process correctly and we were just waiting for the slow governmental approval to go through.
A week ago I got a letter stating that Matthew needed to see a Dr to have some testing done to see if he qualified for SSI. Based on the tiny bit of information in the letter I again just assumed this was part of the process. Fast forward to the call from today and once again there is more to do, and more to worry about. Apparently you can be in special education classes, in out of district programming, AND qualify for guardianship AND still not qualify for SSI because SSI has its own qualifying criteria.
While I tried to stay calm and ask questions and gather information the SSI worker made it clear quickly that I was not super calm and was maybe just a touch overwhelmed. I tried to stress that of course I was overwhelmed. Every single step of this is a lot. Every step of this is not at all what I wanted. It is the step that says that my son will be dependent on me or on a governmental system as an adult and that he will not have the level of independence all parents dream of for their children. On top of that this call was just another reminder that I felt like I was being accused of trying to take advantage of the system.....the system that I wanted NO PART OF!
If my son never needs SSI and can earn an independent living I will be forever thrilled. What a huge success for Matthew to never need SSI. That said, for now my belief is that Matthew is not capable of holding down a job that allows him to earn a living and given those limitations I need him to be set up for success and to be supported. SSI gives him this support but first we have to go through the process of qualifying.
According to the call today this means that Matthew will meet for up to an hour with someone to do some testing and that person will then make a recommendation as to whether Matthew qualifies for SSI or not. Years of IEP testing and teachers showing that Matthew functions at a much lower level than same aged peers. Years of testing showing a low IQ that qualifies Matthew as a person with mild mental retardation. Years of me fighting for Matthew to receive the supports he needs and yet him still only showing a very, very slow placed growth and in one hour a Dr will determine whether Matthew can earn a living independently or should qualify for SSI.
Of course, should this Dr not qualify Matthew, there is an appeal process that we can go through and in time we will see if that becomes necessary, but the long and short of all of this is that it is just always, always a process and a lot to do, and it is all for things that I don't really want anyways. I am sure that there are people who take advantage of the system, but for me this is a road I don't want to travel down, but one that I am told is important that I do for Matthew. It is a road that has had no road map and no direction and almost no check points and yet it feels like it is the only path to set Matthew up for success as he enters adulthood.
I am hopeful that as we go through the next few months all of this will be completed and then when I have to apply for David, when he turns 18, it will all be easy because I will have had experience. For now though it feels like this is a huge unknown into something I dont want to do anyways that is littered with landmines that I am not sure how to avoid and I would rather we just follow the normal life path of college and financial aid applications.
Tuesday, January 21, 2020
Monday, January 6, 2020
David, I'm in trouble with this one
David is known by many as super quiet, and often thought to not really talk as most don't get to hear his voice. What I have learned this week is that he is a freaking riot, he absolutely talks, and he knows his way around a computer way more than I ever believed possible.
David came home on Thursday after having a rough day at school. He had some slight preseizure signs overnight Wednesday night so when his teacher reached out on Thursday describing some odd behaviors from him I told her it could be preseizure stuff or simply that he had struggled with returning to school after winter break. She asked me to touch base with her or to have him email her to tell her what was wrong if I learned anything when I talked to him.
Well David walked in from school talking a mile a minute- this can be a sign that a seizure is coming for David. Often we see his communication increase right before a seizure, almost like his neurons fire more and then the seizure comes. When I asked him how his day was he immediately shared that it was a crazy day. His teacher made him work, his friends were working and it was "bonkers!". He shared that "later in the day he went to the office to do some work and the principal was even there!" It was as if he was surprised that he would find the principal in the office.
I ran out to the store briefly as David kept chattering to his babysitter and when I got back the sitter and David shared that he had taken a moment to write a few emails.
To his teacher he wrote, "It wasn't my fault"
Then in a second email he wrote, "other kids had hard days too".
Then he wrote to the tech department, "My computer was hacked!"
Thankfully, after writing these 3 emails the sitter returned from being upstairs and took the computer away from David! We have not heard back from the tech department but hopefully they know the computer wasn't hacked.
When I got home David immediately shared with me that he wanted concert tickets for his birthday which is coming up in January. He wants to see KISS, Poison, and Guns and Roses. He was able to tell me where each of these bands was performing and when I said that I was unsure about getting tickets he quickly rattled off other adults who could take him! ( Jodi, Gwen, Nick, Francesca, Uncle Ryan and Uncle Andy, if you have desire to see these bands you are on his lists of people to ask!)
Then as I started to look on his Chromebook I saw that he had an email from a company housed in England. Apparently David had been looking to buy a boxed set of Guns and Roses CD's and first had agreed to pay 555 Pounds. In his second purchase he had agreed to pay over $1000 for the same CD's. When I told him that was way too much money to spend he went on to tell me that 555 is smaller than 1000 so we could just pay 555. He also explained that since he was using his school computer that the school would just pay for the CD's. As you can imagine I am certain this purchase is not approved in the District budget!
After I was able to get David away from the concept of buying a CD set for $1000 David decided that he would just recreate himself for his 16th birthday. He wants gold chains and all new clothes and to change his name. His new name......David yellow!!! Why yellow? who knows.....but he had me cracking up!
David came home on Thursday after having a rough day at school. He had some slight preseizure signs overnight Wednesday night so when his teacher reached out on Thursday describing some odd behaviors from him I told her it could be preseizure stuff or simply that he had struggled with returning to school after winter break. She asked me to touch base with her or to have him email her to tell her what was wrong if I learned anything when I talked to him.
Well David walked in from school talking a mile a minute- this can be a sign that a seizure is coming for David. Often we see his communication increase right before a seizure, almost like his neurons fire more and then the seizure comes. When I asked him how his day was he immediately shared that it was a crazy day. His teacher made him work, his friends were working and it was "bonkers!". He shared that "later in the day he went to the office to do some work and the principal was even there!" It was as if he was surprised that he would find the principal in the office.
I ran out to the store briefly as David kept chattering to his babysitter and when I got back the sitter and David shared that he had taken a moment to write a few emails.
To his teacher he wrote, "It wasn't my fault"
Then in a second email he wrote, "other kids had hard days too".
Then he wrote to the tech department, "My computer was hacked!"
Thankfully, after writing these 3 emails the sitter returned from being upstairs and took the computer away from David! We have not heard back from the tech department but hopefully they know the computer wasn't hacked.
When I got home David immediately shared with me that he wanted concert tickets for his birthday which is coming up in January. He wants to see KISS, Poison, and Guns and Roses. He was able to tell me where each of these bands was performing and when I said that I was unsure about getting tickets he quickly rattled off other adults who could take him! ( Jodi, Gwen, Nick, Francesca, Uncle Ryan and Uncle Andy, if you have desire to see these bands you are on his lists of people to ask!)
Then as I started to look on his Chromebook I saw that he had an email from a company housed in England. Apparently David had been looking to buy a boxed set of Guns and Roses CD's and first had agreed to pay 555 Pounds. In his second purchase he had agreed to pay over $1000 for the same CD's. When I told him that was way too much money to spend he went on to tell me that 555 is smaller than 1000 so we could just pay 555. He also explained that since he was using his school computer that the school would just pay for the CD's. As you can imagine I am certain this purchase is not approved in the District budget!
After I was able to get David away from the concept of buying a CD set for $1000 David decided that he would just recreate himself for his 16th birthday. He wants gold chains and all new clothes and to change his name. His new name......David yellow!!! Why yellow? who knows.....but he had me cracking up!
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