Toe Rash

Tuesday morning Jacob woke up and as we were rushing to get to school, yes even in these Covid times Jacob still does a mad rush to be downstairs and ready for school at 9:00, he started complaining of an itchy rash on his big toe.  Filled with exasperation I quickly examined his toe, we put on some cream, and got started with school work.

As the day went on the rash started to expand and by evening time he was covered from head to toe.  I had given him Benadryl, Advil and put some cream on the rash and he was still itchy so I decided to call the Dr.  As I was waiting for the return call from the Dr I realized I was going to have to explain to the Dr that during this time of a pandemic I was literally calling him for a rash that began on my sons toe.  Never before had I felt so ridiculous, but Jacob was itchy and I knew it was going to get much worse as the night went on.

When the Dr called back I started off by explaining that Jacob was covered in a rash and then I smirked as I shared that I knew I sounded ridiculous but  the rash had started on his big toe.  I commented that he shouldn't be TOO surprised as he knows we typically have weird things happening with the Bloom boys, but that the toe rash was a little odd to me and now that he was covered in a rash I figured I should call.

Without missing a beat the Dr shared, " I don't think this is the Covid toe rash" to which I immediately busted out laughing.  I mean come on, that's funny !!! Covid toe rash!!!  Suddenly the Dr became serious and asked if I had googled toe rash.  Didn't he know I was busy homeschooling 3 kids?  working?  managing life?  Did he really think I would google something as bizarre as a toe rash????

Well, after I stopped laughing he explained that there was research to show that there was a certain percentage of Covid cases that started with a toe rash, and that while he did not expect that we were dealing with that he would be monitoring it and look into whether Jacob needed testing or not.

Over the next 2 days the rash remained on Jacob's body.  Poor kiddo was super itchy and uncomfortable but thankfully as the rash remained all over his body- and not on his toe- there was little reason to be concerned about him really having Covid.

For me this has now become our Covid story- each time I think of it I can't help but giggle over the interaction with the Dr.  Poor guy thought I was some overly worried mom after googling and instead had to wait for me to stop laughing to explain that while the risk was low Covid Toe Rash was real.

Leave it to the Bloom's to have a Covid Toe Rash Risk during the pandemic!

Wishes do come true... and sometimes they are unbelivable

David raised enough money last year to send another family on a Make A Wish adventure of a lifetime.  This became a dream of David's when we were on our Make A Wish trip to Disneyworld, but it became a reality this summer with some incredible work by Francesca Casaregola.  With a mission from David, a dream from me and some incredible leadership from Francesc, David's Dream team raised over our goal of $12,000, the cost of an average wish experience.

The staff at Make A Wish had said that they would try to set up a meeting for David and the child who's wish he granted but as time went on I assumed this was not something the other family could do and we were ok with that.  Then, out of the blue 2 weeks ago I received an email from Kirsten, the Director of Development at Make A Wish, and she shared that the "G" family wanted to connect with David and me.

I was so excited that David might get a chance to meet this family as I knew it meant a lot to David.  As my day went on I went to meet my friend Kim from Niskayuna and when I reread the email I realized that the wish family also lived in Niskayuna.  Kim had lived in Niskayuna forever and knows EVERYONE, so I figured I would ask if she happened to know the "G" family.

When Kim arrived to meet me at Blaze she had one of the children with her who she does respite work with.  He was adorable and had me totally entertained from the minute he sat down to eat his cheese pizza.  He had an obvious strong connection to Kim and you could just tell that he enjoyed his time with her.

As we were eating I was telling Kim how I had heard from Make a Wish and asked her if she knew the "G" family.  Kim's eyes teared up and she pointed across the table....through incredible disbelief she explained that the little guy with her was one of the boys from the "G" family.  He was the brother of the Wish child!!!

Immediately Kim connected me with Mrs G and we were quickly both in tears sharing our shock that I was at lunch with her son and that we both knew KIM!  Our chapter for Make A Wish is all over the Capital District, it covers a huge area.  How is it possible that David's wish was granted to a child who was connected to a very close friend of ours?  How was it possible that on the day that I received an email to connect me to the "G" family that I also happened to be at lunch with Kim who had one of the children from the "G" family with her?????  Also, how was it possible that this all happened at a time that David was really struggling at school and had been suspended for 5 days and really needed something good to happen to cheer him up?????

Since connecting to the "G" family David is in contact via text with Ben, the child who received the wish.  David and Ben text frequently and have already realized that they both love Queen and bowling!  David has asked Ben lots of incredible questions and has been having some of the best text conversations I have ever read from David.  He asks Ben frequently if they are friends and Ben continues to assure David that they are.

David has such pride in the fact that he provided a wish for another child,  but beyond that he is even more excited to have made a friend through Make a Wish.

Truly, the world works in the most incredible ways at times.  I will never understand how in this whole wide world it happened that David provided a wish to a family who was connected so closely to our friend Kim and how Kim and I happened to be having lunch together with one of the "G" kids when we found out that David had provided the wish to the "G" family!  Such a small, crazy world we live in that creates crazy coincidences that lead to awesome friendships!

SSI and guardianship

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.

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!