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!
Sunday, April 26, 2020
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!
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.
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!
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!
Monday, June 10, 2019
Teach a man to fish
My boys are growing up and with that it is time for me to make sure that they are ready for the next steps in their lives. I don't see Matthew or David being able to hold down a full time job and being able to be completely independent. For Matthew, the mental stamina to work more than 3-4 hours a day seems to be his maximum. For David, the right job, where he can organize and do the things he loves will be key to him functioning at a job, but even the right opportunity will likely mean that the stress of communication will limit him to a few hours per day.
My boys love to be busy and each have a passion it seems for lawn care and lawn mowing. I have taken advantage of this passion and helped them, along with the support of their respite staff, to line up a variety of lawn care jobs. On Sunday David mowed 2 lawns and Matthew mowed one lawn. Together they earned over $70, but more importantly they had a sense of success, accomplishment and pride in the work that they did. It was hot, and it would have been easier to be home relaxing, and doing their own thing, and yet both went off to their respective lawns with a sense of pride and excitement.
David loves having money in his pocket because he is saving towards purchasing his own lego sets. He has pride when he buys the sets himself and loves to say, "look at my money", "I mow more, I need more money". He looks in his wallet frequently and is so proud that it has money he earned himself.
Matthew is just at the point where he is consistently hanging out with 2 friends and like all good teenagers, they love to go out to eat. Being able to have his own money means that Matthew can go out when he wants to and has cash to spend. He would be more limited if I had to provide him with the money to do these things.
As I watched David mowing yesterday I kept having the same quote going through my head, "give a man a fish and he eats for a day. Teach a man to fish and he is set for life." I felt such pride as I watched him not only mow but mow with care and true attention to detail. He is a hard, hard worker. It was hot outside and it would have been easy to say, "one lawn is enough", but when he got a call for a second lawn the same day, he quickly jumped at the opportunity.
He mowed around obstacles, he mowed around trees, he knew where he had to go back to go over a spot he missed. He was so rhythmic and methodical in his efforts. He took care and pride in his work. I knew that he loved caring for our lawn, but this was the first time I had taken him on a job to care for someone else's lawn.
It was the first time that I was able to see that I have 2 boys, both teenagers, diagnosed with limited cognitive abilities, and who require a high level of support in school who are both able to have jobs that provide themselves with pocket money for now, but that as i look into the future there is a true opportunity for them to have a business. This can easily turn into a job that with someone to oversee and help with scheduling, and managing the financial aspect of the business, that they could have a level of independence and a way to be functional, productive members of society.
For a child to have a level of success, is beyond important. My boys are not defined by their limitations, they are defined by their successes in life. As they have gotten older this is becoming more and more true.
Bloom boys lawn business! So great to have a last name that lends itself to advertising easily and describing a passion and interest my boys show such strength in. Even if this does not continue to be something that they love, what I know for a fact is that my boys can be "taught to fish" and will be able to provide for themselves on some level in the future and THAT is the best descriptor of success I can imagine.
My boys love to be busy and each have a passion it seems for lawn care and lawn mowing. I have taken advantage of this passion and helped them, along with the support of their respite staff, to line up a variety of lawn care jobs. On Sunday David mowed 2 lawns and Matthew mowed one lawn. Together they earned over $70, but more importantly they had a sense of success, accomplishment and pride in the work that they did. It was hot, and it would have been easier to be home relaxing, and doing their own thing, and yet both went off to their respective lawns with a sense of pride and excitement.
David loves having money in his pocket because he is saving towards purchasing his own lego sets. He has pride when he buys the sets himself and loves to say, "look at my money", "I mow more, I need more money". He looks in his wallet frequently and is so proud that it has money he earned himself.
Matthew is just at the point where he is consistently hanging out with 2 friends and like all good teenagers, they love to go out to eat. Being able to have his own money means that Matthew can go out when he wants to and has cash to spend. He would be more limited if I had to provide him with the money to do these things.
As I watched David mowing yesterday I kept having the same quote going through my head, "give a man a fish and he eats for a day. Teach a man to fish and he is set for life." I felt such pride as I watched him not only mow but mow with care and true attention to detail. He is a hard, hard worker. It was hot outside and it would have been easy to say, "one lawn is enough", but when he got a call for a second lawn the same day, he quickly jumped at the opportunity.
He mowed around obstacles, he mowed around trees, he knew where he had to go back to go over a spot he missed. He was so rhythmic and methodical in his efforts. He took care and pride in his work. I knew that he loved caring for our lawn, but this was the first time I had taken him on a job to care for someone else's lawn.
It was the first time that I was able to see that I have 2 boys, both teenagers, diagnosed with limited cognitive abilities, and who require a high level of support in school who are both able to have jobs that provide themselves with pocket money for now, but that as i look into the future there is a true opportunity for them to have a business. This can easily turn into a job that with someone to oversee and help with scheduling, and managing the financial aspect of the business, that they could have a level of independence and a way to be functional, productive members of society.
For a child to have a level of success, is beyond important. My boys are not defined by their limitations, they are defined by their successes in life. As they have gotten older this is becoming more and more true.
Bloom boys lawn business! So great to have a last name that lends itself to advertising easily and describing a passion and interest my boys show such strength in. Even if this does not continue to be something that they love, what I know for a fact is that my boys can be "taught to fish" and will be able to provide for themselves on some level in the future and THAT is the best descriptor of success I can imagine.
California
It was time for us to start doing the impossible.....my niece is dying and we were ready to go visit.....well ready if you count that the plane tickets were purchased. That was all I could manage to do . I couldn't book a hotel. I couldn't pack. I couldn't make plans. All of those things meant the trip was real and if the trip was real, then I would need to prepare myself to say goodbye to my niece and to see my brother in the lowest point of his life. To prepare for that is impossible. To imagine that is impossible, so in my mind if I never packed or booked a hotel then we couldn't really go and I could stop all of this from happening.
Thankfully Friday morning I called my parents and was able to choke out the words "I need help. I can't pack all 3 boys, I cant book a hotel. I can't do this alone." We made a plan to pack the 3 boys together on Saturday morning, and to get through this all together. I walked into work, feeling ready, and I think in reality I had just needed to fall apart so that I could be strong enough to move forward.
Saturday morning we got up and one at a time I was able to work with the boys to get everyone packed. When my dad arrived he handed me a piece of paper with our hotel reservation. Slowly I was mentally preparing for our trip and moving forward.
On Tuesday, as we landed in California, it was a true relief to see my brother. He was able to show us how they were coping- for them it was life as normal. One child has a soccer game, one child has track practice, and they were living each day to the fullest. This set the tone for us as we headed to their house. Seeing Samantha was amazing. She looked good. If you watched closely you could see signs of her struggling, but for the most part she was laughing, and happy and excited to be with everyone.
I knew that for our visit we would need a plan that included a daily outing. I knew that my boys needed time out in CA, and I was aware that Samantha needed time of quiet. I loved seeing that Nathan and Jacob were bonding and I was hopeful that Nathan would join us on some of our outings.
When Matthew was a baby we went to the JellyBelly factory, so armed with a mission to bring back popcorn jelly beans for Samantha, the boys and I plus Nathan headed out!
A little bit lost, plus a flat tire later, (yes our crazy luck followed us to CA! Of course with a car of 4 boys I got a flat tire. Of course the person who came out to help us admitted to being high. Of course a police officer stopped to help while the person who was helping us was high. Of course I had to add stress to my brothers life by getting his car a flat tire and of course the trip to the Jellybelly factory that should take less than 30 minutes took us a little over 45!) we arrived at the Jelly Belly factory!!!
Thankfully Friday morning I called my parents and was able to choke out the words "I need help. I can't pack all 3 boys, I cant book a hotel. I can't do this alone." We made a plan to pack the 3 boys together on Saturday morning, and to get through this all together. I walked into work, feeling ready, and I think in reality I had just needed to fall apart so that I could be strong enough to move forward.
Saturday morning we got up and one at a time I was able to work with the boys to get everyone packed. When my dad arrived he handed me a piece of paper with our hotel reservation. Slowly I was mentally preparing for our trip and moving forward.
On Tuesday, as we landed in California, it was a true relief to see my brother. He was able to show us how they were coping- for them it was life as normal. One child has a soccer game, one child has track practice, and they were living each day to the fullest. This set the tone for us as we headed to their house. Seeing Samantha was amazing. She looked good. If you watched closely you could see signs of her struggling, but for the most part she was laughing, and happy and excited to be with everyone.
I knew that for our visit we would need a plan that included a daily outing. I knew that my boys needed time out in CA, and I was aware that Samantha needed time of quiet. I loved seeing that Nathan and Jacob were bonding and I was hopeful that Nathan would join us on some of our outings.
When Matthew was a baby we went to the JellyBelly factory, so armed with a mission to bring back popcorn jelly beans for Samantha, the boys and I plus Nathan headed out!
A little bit lost, plus a flat tire later, (yes our crazy luck followed us to CA! Of course with a car of 4 boys I got a flat tire. Of course the person who came out to help us admitted to being high. Of course a police officer stopped to help while the person who was helping us was high. Of course I had to add stress to my brothers life by getting his car a flat tire and of course the trip to the Jellybelly factory that should take less than 30 minutes took us a little over 45!) we arrived at the Jelly Belly factory!!!
As we walked in to the factory Jacob quickly ran to find anything Jellybelly that had Mickey Mouse on it. Nathan ran to find anything Harry Potter for Samantha and Matthew, David and I stood in line for the tour. There is something magical about 2 boys who are in a true candy shop and they each immediately run off to find something for their siblings. With a promise that we would buy these items after the tour we headed off to learn about how JellyBelly jelly beans are made.
Halfway through the tour, which was incredible, Jacob came over sweating and truly looking horrible. As I frantically looked for a garbage can he tried his best not to throw up. As this was a self guided tour there was no one who could help us and the entire time David was super excited about all that he was seeing. David was not sensing the urgency of Jacob's need for a garbage can, and I was having little to no luck finding one and was only hoping that Jacob had a few more seconds while I searched!
After a few seconds of illness we continued on our tour and finished with purchases at the gift shop! The boys didn't eat many jelly beans on our tour and Matthew was starving so I decided I would continue in the role of "fun Aunt!" We saw a sign for Fenton's ice cream on our drive home and knowing that my parents had said we HAD to stop here we drove right in. Nathan quickly insisted we had to try the banana split. Jacob quickly insisted that if ice cream was anywhere near a banana it was NOT possibly the best thing on the menu, and all Matthew cared about was that he have something to eat, not ice cream!
With the power to "Create A Sundae", Jacob created this monstrosity which included a brownie, hot fudge and cookie crumbles, which Jacob and Matthew shared, Nathan and I indulged ourselves with a banana split and David tackled a Strawberry ice cream soda. I can easily say this was by far the BEST ice cream I have ever tasted and that as we sat around the table Nathan and the boys were able to share some of their thoughts and fears about Samantha being so sick. With kids this age these conversations come and go quickly. Around ice cream sundaes we discussed whether G-d was possibly real and if G-d was real why would this happen to Samantha and our family. We talked about what happens when someone is dying and we shared our fears. I was able to share that I have seen 5 families who have lost children to various illnesses and that while life is never the same that they have all continued living. Somehow after the saddest possible time of your life you find a reason to smile again. Somehow you continue because you know your sibling or child would want you to continue.
As kids always do, as this conversation became too hard we moved on to laughing about silliness, and then we wrapped up our ice cream and headed back to see Andy, Teri and Samantha. Apparently Nathan has a sensitivity to milk which I was unaware of and so Fenton's ice cream may not have been the "best" choice, but I will always believe that the ice cream just set the stage for conversations that were necessary in a safe place. Plus, I needed memories made on this trip and my boys know me well enough to know that we typically don't go to candy factories AND out for ice cream on the same day!
As we returned to Andy's house, we ran in to give the popcorn jelly beans and chocolate Harry Potter wand to Samantha. Of course, as younger brothers and evil cousins often do, the boys had slipped a few of the Harry Potter disgusting jelly beans into the bag of popcorn jelly beans, so we warned Samantha to carefully inspect each jelly bean before eating it. Samantha then spent a little time doing a Disney puzzle with David and the boys enjoyed some video game time, and then we headed back to the hotel for the night.
My hope was that each of our days in CA would be filled with some smiles as we prepared for our goodbye and I was able to accomplish my mission today. Additionally, I was able to have some hard conversations and to let Nathan know that he could reach out at any time. I was able to set the stage for him that I knew this was hard and that I know other families who have survived this horrendous worst part of life. We were also able to lay plans for other fun days as we visited so that we could look forward to more memories being made together.
Each night as we returned to the hotel I felt like I had left a piece of my heart at Andy's house. I will never be sure if our visit was "done right". It is beyond strange and impossible to go say goodbye to someone who is 16 years old. We laughed a lot on our trip, had a few serious chats, and shared some time together just hanging out. For me, my time with Samantha was of such value. It was a week spent making memories of a lifetime. For my boys it was simply time being with family and creating memories.
It will never be enough because you can't live a lifetime in a week, but it was the best we could do under impossible situations, and for that reason, it was ok.
Saturday, May 4, 2019
Back to District after 6 years out
Last night I got to share the best news ever with Matthew......he is returning to Bethlehem High School next year as a Super Senior. Since 6th grade when Matthew moved to BOCES for school Matthew has dreamed of going back to Bethlehem. For him, being a Bethlehem Eagle with all of his friends was so important, but unfortunately in 6th grade, when he was struggling so much behaviorally, he had to move to an out of district class because our district does not have a class that is appropriate for children with behavioral needs and lower level IQ.
Our local BOCES program has been truly incredible especially over the past 3 years for Matthew. He has had a teacher who truly understood Matthew. Her standard for behavior was always high and she insisted that he be his very best at all times. She held him accountable when he struggled and knew how to make him work, learn and succeed. The principal at his school was incredibly motivating. he would meet the kids on the basketball court to encourage them to do their best and to remind them of the expectation of proper behavior. He would meet with Matthew and always remind him of the amazing young man he was becoming.
Between his teacher and his principal, Matthew had a team that I could work with to ensure that he was going to become the best person possible. Slowly the changes started to occur. As we worked together, Matthew realized that he was responsible for making good choices, and gained the skills necessary to control his behavior. He was able to access support when he was frustrated but also realized that his tantrums would simply not be tolerated at home or at school.
As time has gone on Matthew has consistently asked for the opportunity to return to our local school district. I have wanted him to return because I have always been sad that he hasn't had access to the non academic parts of school- band, drama, and other clubs. However, I knew he wasn't ready and he needed to be in a program that allowed for his emotional and academics needs.
This year his teacher and I thought it might be time for Matthew to prepare to return. He started to attend an afternoon program which allowed us to see that Matthew was ready in most aspects, but that his future teachers would need to be aware of the importance of having high expectations for Matthew. While he was thriving in his morning program, the freedom of the afternoon program created some struggles for Matthew. However, with some teaming between the AM and PM teacher, we were able to help Matthew to reach his full potential in his PM program as well.
This week, after talking to the Bethlehem teacher, and the CSE chair person, it appears that Matthew is ready to return to a Bethlehem Central School District class next year. Behaviorally he is in a great place. Educationally, he is still struggling, but that will be something Matthew always struggles with.
As his mom, I am so proud of Matthew. He truly has worked with his eyes on the prize for the past 6 years and has earned himself this opportunity. That said, this is also the year that his same age peers are graduating from high school. They are posting pictures with their swag gear announcing the colleges they are attending. So many of them are off to the next steps in their lives. Ready to spread their wings and fly, they are off to College. For Matthew, this return to our school District, is as big as being accepted to college. He is truly over the moon, jumping up and down and so proud of himself.
He wants a Bethlehem sweatshirt- which he will absolutely get! He wants a chance to be on every team and to participate in every club! He will be in school for the next 3 years and then as he turns 21 he will graduate. It seems very fitting that he is returning to Bethlehem and truly will be graduating from BOCES. He has earned this major step in life. It may not be college, but it is a huge step for Matthew and one that he and I are over the moon proud of!
Our local BOCES program has been truly incredible especially over the past 3 years for Matthew. He has had a teacher who truly understood Matthew. Her standard for behavior was always high and she insisted that he be his very best at all times. She held him accountable when he struggled and knew how to make him work, learn and succeed. The principal at his school was incredibly motivating. he would meet the kids on the basketball court to encourage them to do their best and to remind them of the expectation of proper behavior. He would meet with Matthew and always remind him of the amazing young man he was becoming.
Between his teacher and his principal, Matthew had a team that I could work with to ensure that he was going to become the best person possible. Slowly the changes started to occur. As we worked together, Matthew realized that he was responsible for making good choices, and gained the skills necessary to control his behavior. He was able to access support when he was frustrated but also realized that his tantrums would simply not be tolerated at home or at school.
As time has gone on Matthew has consistently asked for the opportunity to return to our local school district. I have wanted him to return because I have always been sad that he hasn't had access to the non academic parts of school- band, drama, and other clubs. However, I knew he wasn't ready and he needed to be in a program that allowed for his emotional and academics needs.
This year his teacher and I thought it might be time for Matthew to prepare to return. He started to attend an afternoon program which allowed us to see that Matthew was ready in most aspects, but that his future teachers would need to be aware of the importance of having high expectations for Matthew. While he was thriving in his morning program, the freedom of the afternoon program created some struggles for Matthew. However, with some teaming between the AM and PM teacher, we were able to help Matthew to reach his full potential in his PM program as well.
This week, after talking to the Bethlehem teacher, and the CSE chair person, it appears that Matthew is ready to return to a Bethlehem Central School District class next year. Behaviorally he is in a great place. Educationally, he is still struggling, but that will be something Matthew always struggles with.
As his mom, I am so proud of Matthew. He truly has worked with his eyes on the prize for the past 6 years and has earned himself this opportunity. That said, this is also the year that his same age peers are graduating from high school. They are posting pictures with their swag gear announcing the colleges they are attending. So many of them are off to the next steps in their lives. Ready to spread their wings and fly, they are off to College. For Matthew, this return to our school District, is as big as being accepted to college. He is truly over the moon, jumping up and down and so proud of himself.
He wants a Bethlehem sweatshirt- which he will absolutely get! He wants a chance to be on every team and to participate in every club! He will be in school for the next 3 years and then as he turns 21 he will graduate. It seems very fitting that he is returning to Bethlehem and truly will be graduating from BOCES. He has earned this major step in life. It may not be college, but it is a huge step for Matthew and one that he and I are over the moon proud of!
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