Tuesday, July 11, 2023

On the road to "adulthood" without a map

 Parenting has no road map.  We each parent the children we are given.  This I understand.  And I also know that everyone's lives has challenges.  Some harder, some easier, but we each face challenges daily.  Currently I feel like I am trying to parent 3 young adults, 2 of whom are considerably younger than their physical age, without direction or a map and I feel like I can't do it well enough.  I can't move fast enough.  I can't find the path we are supposed to travel and worse, no one else seems to know what road we are supposed to be on either.

Matthew was in a program for young adults with disabilities for almost 9 months.  I  dropped off Matthew- a kid who was healthy, proud of his appearance, and social with everyone- truly most saw him as the Mayor.  While things were great to start things started to go downhill in February.  Suddenly he had 4 teeth that needed root canals and he was putting on a significant amount of weight.  Not the "freshman 15" so many gained, but more like 30 pounds which quickly grew to 40/50 pounds.

Matthew came home in May for Memorial Day and he was in a t-shirt and I thought I would throw up.  Suddenly I saw that he had stretch marks disfiguring his entire body.  Stretch marks that were never, ever going to go away.  How did I miss it?  I knew he had gained weight.  I had called a meeting with the program earlier in the year to discuss my concerns How did I see him gaining weight and totally not notice that his body was forever changed and covered in stretch marks?  Why did I miss it? Why didn't I help him?

Then we went to the dentist and he needed 2 more root canals.  2 more.  We hadn't even gotten clearance to put crowns and posts on the first 4 teeth ( I had been fighting with the insurance company since February) and now he needed 2 more root canals.  The dentist urged me to call the insurance company and to fight one more time as passionately as I could.  She was clear that it was root canals or removal of SIX of his front teeth.  Again I felt like I had been punched in the gut. I wanted to hide.  Why hadn't I fought for him?  Why did I not do this better?  Why didn't I know?  Two of his teeth were turning black on the sides and yet I missed it.  I hadn't seen him as much because he was busy and in the time I hadn't seen him his teeth had started to turn black.

I desperately called the insurance company one more time and the senior representative shared that they were not going to ever approve the crowns and posts, the insurance company didnt see the value in this.  The insurance company saw his teeth as rotting and "simply pulling SIX front teeth" was a "more cost effective option.  How would my boy, the mayor, suddenly have no front teeth? How did the adults who were with him for hours at a time not notice that his teeth were rotting?  Why did he not complain of pain?  What kind of mom doesn't notice?  In 9 months how was his body so destroyed in a program where he was supposed to be supported as he learned to gain independent living skills?

Unfortunately the staff in the program felt like they couldn't support Matthew's level of need in the program.  What did he require that was so burdensome?

  • reminders to brush his teeth- just simply verbal reminders
  • reminders to limit juice intake at home.  Sure, he might drink it when away from the program, but limiting juice intake at all would help him protect his teeth.
  • encouragement to exercise- provide him options- he loves to be busy, and yet they wouldnt offer prompts like "do you want to call a friend to shoot hoops"  
None of this seems like high levels of supports, there was a paid staff person in his house daily, and yet this level of support was found to be too much for the program.  I did all that a mom could do when faced with her son losing his teeth and permanently marked with significant stretch marks and I brought Matthew home to begin to help him to relearn the skills to live independently.

I also called for support to see what is a level of support in a program that i can expect.  Today I got answers.  Today I feel like I can't do it good enough, fast enough..........enough.

See the Care manager needs to write specific goals for Matthew and these goals guide the program to offer the level of support he needs.  Sounds easy enough.  Except the goals apparently need to be "specific" and the goals we wrote were too general.  

Matthew has a goal of learning to be healthy.  Seems simple enough.

What I learned today is that we would have needed to define healthy to hold anyone accountable for Matthew's current physical state of health.  I didn't know this.  No one taught me how to write these goals.  No one taught me what I was looking for.  No one taught me.  Can't we all define healthy as showering daily, brushing teeth daily at least one, eating a healthy well balanced diet?  Cant we define by contrast UNHEALTY as gaining so much weight in such a short period of time?  As suddenly needing 6 root canals?  As going from being active to so sedentary?  Can't we all agree?  Why is it that the parents have to hold this all on their shoulders?  It is so heavy to carry this burden without instruction and guidance.

Another goal was Assist with Budgeting skills.  Matthew spent so much money each week on food.  From grocery shopping to restaurants to snacks at the gas station, he bought food weekly in such large amounts and it was so easy for staff at the program to track as they looked at the spending on his ATM card.  However, there was no guidance on how to save. No putting money away for emergencies.  No guidance.  Nothing.  The goal needed to say Matthew will be assisted with budgeting skills and taught to save $X each week in order for the program to be held accountable.  Doesn't budgeting by virtue include learning to save?  Doesn't budgeting mean that a grown up in the program is going to teach him to put off the short term desires for long term needs?Doesnt this goal imply that someone will be working to teach him these things as he gains independence?

No, again it was on me to ask the care manager to make the goal more specific so that the staff in the program would know without any questions what is meant by the goal.  Except I didn't know.  I didn't know that the goals weren't good enough and so this will continue to happen to other families and young adults.

One day I am going to die.  That is simply the reality.  If life goes in the natural order of things I will die before my boys.  Who will care for them when I pass?  Who will make sure that the "goals are specific enough?"  Who will ensure that the boys bodies aren't further destroyed?  Who will ensure that Matthew will stay busy and engaged and happy?  Who will care for them when I die and who will make this easier on me so that I can enjoy watching them grow into the incredible young adults that they are?  

Tuesday, October 18, 2022

Matthew goes to college

 In August 2022 Matthew began attending a program for kids with special needs on a local college campus.  It has been by far the very best experience for him.  That said, Matthew is and always will be Matthew, and therefore this program, since Matthew lives on campus, has allowed me some of the very best Matthew Bloom stories ever.

Matthew is often funny and has absolutely no idea how funny he is.  He can be indignant, and have a persistent insistence on the way that he thinks the world should be and when I try to tell him otherwise he becomes so frustrated.  This is the funniest when he is being indignant and insistent on things that he is 110% wrong about.

Without further ado....the funniest Matthewisms since he began the this awesome program.

September in the shower

Matt to me via text

Matt- Can you call me

Me- sure

Matt- answers the and immediately says, "you caught me in the shower"

Me- then why did you ask me to call you if you were showering?

Matt- i wanted to tell you about the dinner I made.  I made sausage and peppers for dinner and pasta.

Me- are you still in the shower?

Matt- yes, but I don't know why you called me when I am in the shower.

Me- matt, please don't answer the phone in the shower

Matt- but I made sausage

Me- hangs up phone.....because the vision of Matt in the shower talking about sausage is more than any mom needs to cope with

Matt wants Tinder-  again via text

Matt- I have a question can I get the tinder dating app?  my friend was showing me about it.  You can say no it's fine he was showing me the different things you can do with it to meet people.

Me- immediately calling Matt- hi, no you cannot get tinder.  Do you know what tinder is?  It's a meet up app.

Matt- no it's not, you can do lot's of things with it.

Me- Matt it's an app for  people to meet each other and hook up.  Then realizing he likely has no concept of "hook up" I proceed to define that for him all while dying a little inside.

Matt- you are wrong.  It is not for just hooking up.  And in our program you can get the app and then you take a cum and call test

( a little aside here- in this program you take a lot of tests to show that you have different skills, so the fact that there is a test associated with app usage is surprising to me.  However, the fact that it is called a "cum and call test" has me again dying inside.

Me- Matt, what are you talking about?  What kind of test?  You can't have this app.  There are lots of ways to meet people.

Matt- "its a cum and call test.  Maybe I'm saying it wrong,  I can't remember, but they said cum and call and then you can date people.  They said you take the test and you know in 6 months if you passed or not.

Me- inside my own head because I can't.......you don't know in 6 months if you passed!!!!  You know in 9 months if you FAILED!

In my out loud voice- Matt, at this point I need to say no.  We can talk about it, but there are lots of great ways to meet people and Tinder is not the best option.

A week later we have a meeting with staff from the program and I address the Tinder question.  Upon asking what in the world a Cum and Call test is, the staff explain to me that all kids take a CONSENSUAL test to see if they can have friends over with the door closed.

Ok.....so "cum and call" = consensual.........gotta love Mattisms


Matt is loving his new found freedom and like all good young adults he spends an inordinate amount of time at the mall.  Armed with a gift card he went to Aeropostale to shop and found he didn't have enough money on the card for anything except underwear.  he convinced himself that the 10 pairs of underwear he had were not enough and that 1 more pair would absolutely be the difference in his life and promptly picks an awesome pair.

Upon going to the checkout the cashier tells him that it is Buy 1, Get 1 free for the underwear.  Apparently he explained to her that he only needs 1 pair.  She tells him that that's ok, but he may as well take the free one too.  He insists that he only needs 1 and that 1 is good.

He then calls me to tell me how he "saved money" and didn't Buy 1, Get 1 free.  Realizing I won't win any argument about this silliness of this I simply nod and smile and text some friends the newest Matthewism.

Fire Drills

In this program fire drills are a big deal. All of the kids are learning to cook for themselves and so the fire alarm can go off at times pretty frequently.  Matthew was putting on pajamas one night just as the fire alarm went off.  Afraid of not making it out in time, Matthew immediately ran out the door.......without his pants on........just in underwear......

And then he went on to explain to me that you HAVE to get out quickly, you don't stop for ANYTHING......like I'm the idiot.  there is always time to put on pants, or grab a towel or SOMETHING before running outside in your drawers!

One day, the goal was to write a book.  I don't knot that is a reality given life, but if nothing else this blog is a great way to keep documenting the life of the Bloom boys.  Matthew is a one of kind, lives life to the fullest kind of guy and I'm just along for the ride, laughing and groaning all the way.

Sunday, June 19, 2022

Happy Father's Day Papa.....Papa style

On September 11, 2020 my father passed away of a heart attack very suddenly.  For my boys, who process life slower and differently, his sudden passing has taken a while to process.  They knew of course that he was gone, but processing the emotional reality has taken it's own path for each of them 

This year as Father's Day approached David was clear that he wanted to send a card to my dad.    My mom and Jacob shared that this isn't good for the environment but he was not to be swayed.

Jacob was insistent that we needed to eat hot wings for Papa on Father's day as my dad liked any and all foods as hot as humanly possible.  One of our favorite Father's day memories was at Buffalo Wild Wings when my dad was eating Carolina Pepper wings and Jacob took a lick and ran around the restaurant as his mouth was on fire.

So, at around 3:00 today David and I set off to find the perfect card for Papa and the perfect balloons.  Our first stop was at the Dollar Store to get balloons.  We looked for a card but none seemed "just right" so we took our 2 balloons, put them in the car and headed to Hannaford to grocery shop and look for a card there.  While no card was found we purchased our groceries and headed out  In order to help David put the groceries away I opened the trunk of the car and watched as both balloons slowly floated up to the sky......without a card attached.

Watching David's face fall, I reassured him that we could go back to the Dollar Store and get another 2 balloons and reminded him that we were going to CVS to get a card.  As we got to Dollar Tree I handed David the money, reassured him that he knew what he was buying and for the first time ever I sent him in alone to make a purchase.  I have no idea what happened in the store and if the lady supported David or if he used his words to make the purchase but he walked out with 1 new balloon and we headed to CVS to find a card.

At CVS David looked and looked at every card  He spent what seemed like forever until finally he picked out a huge card that spoke exactly about who my dad was as a papa.  It was one of those cards that folds out into about 4 pages and was really heavy.....at the time I gave this no thought, afterall we were putting the card up into the sky with HELIUM BALLOONS........in the future, weight of the card will MATTER.

At around 5:30 armed with a card and a balloon we headed to pick up my mom.  We drove to Clifton Park to eat at Buffalo Wild Wings in honor of Papa and made attempt number 1 to let the card fly off to Papa.......and the card fell to the ground.........

With a promise to buy more balloons we headed in to eat dinner.  If you haven't been to Buffalo Wild Wings it is a unique restaurant.  Essentially what we found out tonight is that all food is guaranteed to come out hot......no matter what order you want it delivered in.

Our plan was to eat a few wings in honor of Papa and then people would eat their meals.  However, Jacob's fries came out first.....hot.........then my mom's tacos.....hot........then my buffalo cauliflower......but still no chicken wings.  Then a little later David's buffalo mac and cheese came out, and finally Matt's cheeseburger......but still no chicken wings.

As we all finished our meals, and were totally full the chicken wings were delivered to the tables to 5 people who were totally full.    As we asked why the appetizer would come out last we were told that the Buffalo Wild Wings policy is that all food comes out hot once it is ready.  With a good chuckle, and a take home container full of chicken wings, we moved on to find balloons.

Thankfully at 7:50 at night we found a Dollar Tree that was open and we purchased 2 more balloons.  The thought was that of course 3 balloons would lift this card to heaven from David to his papa.   With a plan to let the balloons go at the airport we drove towards Latham.  We pulled into the airplane watching spot, a favorite spot of David's, and tied the 3 balloons to the card, and let go.......and they dropped to the ground.  The wind blew the balloons along the ground and my hope was that we could convince David that they would somehow get to Papa, but this was not his vision and it was not to be.

We once again put the balloons in the car, and drove off in search of more helium balloons.  The need for these balloons was getting more desperate as David was becoming more sad.  He had a clear vision for Father's Day and he needed this card to get to his Papa.  We offered a smaller card.....no dice......we offered to send only part of the card so it was lighter and would fly......no dice.......we headed off for more balloons.

As we pulled into Price Chopper I knew it was here or we would have to explain to David that this was simply not meant to be.  He was struggling to understand why we couldn't make this happen......he was confused and kept saying we needed to get bricks or tires or other heavy things to make the card go up.  We kept trying to get him to understand that he needed helium, but he was getting sad.  He kept saying to get heavy things, and was looking up places to get balloons.

As we walked into Price Chopper there were so many balloons and I was hoping to find a kind staff person who would either help us get balloons or sell us some of the balloons that were already blown up.  The first 2 staff members I approached were clear that the floral shop was closed until 8:00 AM.  With David by my side I worked up the nerve to ask a 3rd very, very kind staff member, a young woman, who was determined to help us.  Kindly she opened the helium cabinet and blew up 4 balloons.  Each one she checked with David to see what color string he wanted and he answered her.  It was clear that she knew we were on a mission and she was determined to help us get this card to Papa.

Once the 4 balloons were blown up I sent Jacob and David to the car to tie the balloons to the card and I went to pay.  Within moments Jacob reappeared.  I was certain he was joking as he shared that the 4 balloons blew away while he was tying them to the card.....however Jacob's face was clear that he was not joking and we needed more balloons.  Thankfully the clerk at this time was all in to making this dream come true and she quickly started blowing up more balloons.  

Two more red balloons later and we were back at the car, ow with 5 balloons tied to the card we were ready to make this card fly to papa......and yet the card was STILL not ready to fly  Again, David looks so sad, and yet at this point I am done......I am about $20 into this task by the time you add in the balloons and the card and there was no telling how many more balloons were needed to make this balloon fly.

Finally, I channeled my inner Papa and decided that we needed to simply do some slight of hand.  Under the cover of darkness, I tore the card off the balloons, hung the balloons out the car window, drove through the parking lot, and let the balloons go.  Ever so quietly I passed the card to my mom to hide in her purse and to never speak of again.  Whether David was simply done with our craziness or if he truly believed that the card went up with the balloons, Ill never know, but it doesn't really matter.  What matters is that our night ended with happiness, another year celebrating Papa together, and another year of all of us proving that we CAN go on without Papa.  The world isn't quite as full, and definitely not as perfect, but on the days that we need him to  he comes through by making us laugh at the insanity that is our lives as we hunt for balloons to answer the question how many balloons fly a card to heaven.

Sunday, April 26, 2020

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!

Saturday, February 29, 2020

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!

Tuesday, January 21, 2020

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.

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!