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?  

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

October

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.

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.

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!

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.

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!!!

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.

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!

Life

It has been a long few months and I have spent a fair amount of time trying to figure out how to be a better mom.  David may not say much, but since his most recent respite worker left he has spent a lot of time telling me either
* he is moving in with one of his uncles
* he is changing families to a family where no one yells
* he is running away and moving in with his respite worker


While I know in my head that all families have struggles that no one sees,  it is really hard to have a limitedly verbal child who chooses to use language to insult you.  It is hard to walk downstairs EVERY morning to find food all over the couch, the floor and the entire family room and no matter how calmly I ask David to clean things up, he gets upset.  He then immediately begins to tell me how horrible I am and how awesome it would be to live in 100 other places.  No matter how much I have tried to compliment him for only making a little mess, or downloaded apps on his ipad so he has activities to do in the kitchen while he eats, it is a daily struggle and a true mess.

I know in my heart that it is not his fault.  He struggles with intense ADHD and the meds are not in his system when he gets up in the AM, so I assume this is why he pours cereal all over the kitchen, and then milk all over the place and then when he carries the food into the family room the mess just spreads from there, but it really doesn't matter who's fault it is......it is STILL A HUGE MESS!

I have tried pouring him a bowl of cereal- on those days he chooses to eat pop tarts instead....again, not 1 pop tart, but rather he opens all of the pop tart pouches, takes 1 bite from each pop tart and then leaves them open all over the chair while they crumble all around him.

I have tried leaving him pop tarts- just 1 package- on those days he opens the waffles and takes them all out and takes 1 bite from each waffle, and then leaves them all over the place while he sits and watches tv on top of, next to and all around the waffles.

I have tried getting up at 5 AM to catch him before he gets up and make him breakfast.  On those days he sits silently in his room under his covers watching his ipad, then he goes downstairs to eat when I eventually go up to shower......of course he eats as described above!

I have tried talking to him.  I have had my brother explain how we can get ants, and mice and other yucky things from the food. I have praised him for doing a great job when he eats in the kitchen.  I have done a sticker chart....I have yelled....I have tried everything I can think of. and yet no matter what I try, essentially all I am told is that he hates me and he is moving in with someone else who never, ever, ever yells!

Today as he and I played a game with friends and they saw him become frustrated and saw me become frazzled a friend said something very wise.  I commented on how he always feels like I need to do better to stay calm, and how he needs to be kinder to me, and she reminded me that I need to be calmer to myself!!!

I want to be perfect.  I want to ensure that I have given them no reason to go to therapy....and yet I have already given them 1000 reasons all to go to therapy.  I want to go to bed every night with hugs and kisses all around, but in reality I am human.

I described to Jacob today how I am essentially a human thermometer.  How no one action really ever makes my blood boil, however all of the little actions make the red in my thermometer go up, and unfortunately by the end of the day often my red is at the top and the explosion is often bubbling under the surface.

I do my very, very best to stay calm, and keep the bubbling at bay, but with 3 kids with significant needs, the demands are really high on me.  My children are in school with a lot of adults to support them.  There are a lot of people to hear their demands and to answer their questions.  When one person can no longer hear the same request over and over a new adult can take over. 

At home, I am the only one to hear their true needs.  I am the only one who hears David's voice and all of the challenging things.  ( that is unless he texts you....then you may get one of his texts where he tells you I am mean or something else about me....)I am the only one he hears Matthew beg me to let him drive over, and over and over again.  I am the one who hears Jacob's needs. 

For Matthew it is painful to disappoint him over and over again.  I would love to let him drive, but that would be unsafe for him and those around him. Every time he asks it hurts me.  Yesterday he asked why he "had to be born this way and why his brain is broken".  As I steadied my voice and quickly gave a reason that didn't blame his birth mom, as that is not fair, we talked about him driving one day in the future.   I don't know if that future will come, but at least it bought me time.

For David, once he is medicated life becomes easier, but it is a challenging hour that he and I live through each morning.  I am sure one day we will find a solution, but for now it is up to me to have control over my reaction because I am able to be in control, and he is not.  That said, as my furniture is ruined, and I have to clean up daily, it is hard, and I am human.

For Jacob, his needs are still those of a more typical child, coupled with the speed and impulsivity of his ADHD and at times those are challenges.  There are so many times he questions why he can't be more like "all of the other kids" and I have to remind him that he is doing great, and simply help him move on.  He has grown so much and I am so proud of him. 

This is our daily life.  Of course we are not alone at all in life as we know it, but we are in a minority of people of live in a single parent household with 2 children who have needs significant enough to need to be educated in an out of district placement and one child to be educated in a self contained classroom.  There are a minimum of 4 adults for 6 children in each classroom my children attend,  and yet I am alone at home.  In my rational head, I am not sure why I truly believe I should be able to pull of being with my 3 kids alone.....but my mom head says of course I should be able to do this...maybe it is ME who is crazy!!!!

To Matt on the day after his 17 birthday

Even as Matthew turns 17 the reality that  I am his mom still amazes me.  I still feel 25 and so vividly remember the phone call that there was a little boy who needed a mom.and that while there were still a few hoops to jump through, it was likely that if said yes he would be my son.

I had been working with an adoption agency for almost 4 years when I received that call, so some would say "my time had come", but in so many ways I still was not quite ready.  I had my ovaries removed due to ovarian cysts slowly from the time that I was 13 until I was 21.  Every few months a cyst would form and the cyst would be huge and sometimes strangle a portion of my ovary, or simply would burst and cause such pain that a portion of my ovary was removed.  I had worked in child care from the age of 12,  I knew that all I ever really wanted to be was a mom, so to have my ovaries removed slowly with so many surgeries seemed like the cruelest joke possible.

Given my dream to become a mom, I had the final part of my ovary removed at 21 and soon after I registered with an adoption agency. While I wasn't ready to be a mom at 21, I also knew that the process was a long, drawn out process and I wanted to have a child in my life, so I figured I would start the process early.

At 25 I still had not received even one call from the first agency, and so I signed up with another agency, Adoption Star, which was out of Buffalo and was at that time a new agency.  I connected with the owner of Adoption Star upon one of our first phone calls.  As an adoptive parent who was out of the Buffalo area by the agencies requirements I had to be open to a biracial or African American child, and my biggest concern at the time was whether it was fair to adopt a child of a different race as a single person and then raise that child in the Jewish faith.  The owner of the agency shared her story with me of her African American son who she was raising Jewish  and shared that while it wasn't always easy, he was thriving and she encouraged me to be open minded.  As I was surrounded by a strong community I registered with Adoption Star and soon after I received the call that Matthew had been born and needed a family. 

I was just finishing up my first Friday at summer camp when the call came in.  I remember leaving work quickly and driving to my parents house, I came in the front door and quickly started crying, "I'm too young to be a mom.  I'm not ready".  (odd sentiments from someone who had actively pursued parenthood for over 4 years at that time).  My mom and dad and I talked through the realities, the challenges and then went shopping for all that was needed should Matthew be placed with me.  On Saturday morning my dad and I then drove to Buffalo to meet with someone from Adoption Star to sign the paperwork.  As long as all went well, we were then to drive to New Jersey on Sunday to meet Matthew.

My grandmother and great Aunt were coming to town that Saturday, but my dad and I had to drive to Buffalo.  We ended up meeting them and my mom at a restaurant for dinner after our drive.  I will never forget, my Great Aunt Sarah gave me a gift of awesome baby overalls and we talked and shared my excitement over dinner.  I was amazed even then that my grandma and my aunt barely batted an eye as I shared that Matthew was African American and we did not yet know his HIV status.  To these two women who were over 80 years old they had to be just shocked that this was happening, however to me all they shared was excitement and eagerness to meet my son.

As 80 year old women they had been adults at a different time in our country.  I am certain that my grandmother was very worried about the struggles I would face having Matthew join our family as an African American child.  However, while she shared some worries, from the minute she met Matthew he was her great grandson.  She supported him and loved him from the start and welcomed his as a Bloom.  To me this was always one of the biggest gifts my grandmother gave me.  So many would have questioned my sanity.  They would have wondered aloud what in the world was going on- I was single, working in child care and only 25 years old.  She would have had every right to express her shock at my life choices, but instead Matthew was immediately her great grandson and as her granddaughter I was supported and loved!

As Matthew grew and his struggles became more apparent my grandma's love for Matthew continued to grow.  She worried as he was a 10-12 year old who was really struggling but shared in every joy as he became a young teenager.  When she learned that Matthew was mainstreaming in school she called me with such pride in her voice.  To me he had succeeded in mainstreaming for art, but I wanted more.  To her it was as if he was mainstreaming and thriving in calculus!  She was so proud at how far he had come. 

When in the past few years he got a job and started mowing lawns she continued to beam. Every single step in life that he made forward allowed her to brag on him more and more.  She was so proud of the young, caring, kind man he was becoming.  She always questioned what his future would look like and how he would grow to live independently but took such pride in every step forward he made.

Yesterday, on his 17th birthday, I stopped to think about how proud she would be of him.  He is working as a maintenance person at a Jewish summer camp and truly thriving.  He gets on the bus each day with happiness and comes home each night to tell me of the lawn he mowed, or the window he helped fix.  He is learning skills and feeling pride at all that he is accomplishing.  He is surrounded by the Jewish singing of the campers, and is working hard to play drums in the shabbat band at camp, he has found a place where he feels such pride and accomplishment.

My grandparents owned a day camp which is now owned by my Aunt and Uncle.  To have my son working at a day camp fills my heart with pride.  The maintenance staff at my grandparents camp was a very important job.  It was a role that was depended on and the caretakers were treated like family.  They worked at camp before the counselors each year to get camp ready and they ended the summer closing up the camp after the staff left.  This was a role that was seen as vital because the maintenance staff work, while behind the scenes, allowed camp to function smoothly for the staff and campers.  

In so many ways Matthew has brought our family full circle.  He combines my love of Judaism and Jewish education with our family commitment to the camp experience for children.  The Directors at his camp have allowed him to be a part of the camp community by seeing Matthew's strengths and allowing him to be an important part of the camp family by doing what he does best. 

As you turn 17 Matthew I want you to continue to remember:

1.  You bring joy to everyone you meet!  You smile, and greet people with such passion, you truly make people smile.

2.  You know who you are and what you love to do. Continue on being you!  

3.  You not only made your great grandmother proud, you make me proud to be your mom!

Happy Birthday Matthew!  I love you! Thank you for making me a mom!

Being a social person in a solo world

If you meet Matthew you immediately know that socialization is important to him.  He loves people; loves to talk to people, share stories, and simply be surrounded by people.  For Matthew this is one of his biggest challenges. He has no friends.  As a social person, he constantly feels lonely and isolated. 

He watches to see how much traffic there is out and about each night and is then heartbroken when there is a lot of traffic.  He is sure that everyone else is out with friends and he is lonely and at home.  When the roads are quiet it is slightly easier for him to be home, but even then only for short bits of time. 

He loves to drum and can typically shoot hoops for a while by himself, but recently he has become unhappy even doing these 2 things.  He simply wants to be busy with people all of the time.  Unfortunately, this is a need I cannot meet for Matthew.  I cannot make other 16 year olds reach out to him.  I cannot create a group of kids for him to be with.  I cannot make up for him missing having a peer group.

Up until recently being with family seemed to be good enough. Now however, as he sees kids his age out and driving and sees that they have a new level of independence it seems that he is living life at a new level of isolation and frustration.

I am allowing him more independence on his bike, but even then I worry that he is alone and at risk.  However, I realize that I cannot keep him safe or teach him independence skills if I never let him try being alone.  That said, I fear that the risk for him is a large risk.  He cannot explain what he is thinking often, and especially not in a high stress situation.  He often cannot share things that happen in a chronological order that make much sense.

In my dreams we have a group of 16-18 year olds who suddenly move to our neighborhood and accept Matthew for where he is on a daily basis.  In reality all I can do is try to provide him with opportunities for socialization and hope that as he gets older he finds social opportunities that meet his needs.

For now, all I know is that he is lonely, and I can't make it better, even though i want to. 

Time out rooms and restraint

If anyone had told me that I would be dealing with all 3 of my children being placed in time out rooms at school and restrained by their teachers I would have told you that you were crazy.  Who even knew that places like time out rooms existed in our public schools?  Who knew that teachers were participating in a training to learn about restraining young children?  Who could have predicted that my boys would be in situations where this was the outcome for them?

How am I to sit silently while this is happening?  Do you know that there are children involved in these situations in your public school?  Do you agree with it?  Would it be ok for your child? 

I understand that when my child is seen as a threat that the teachers need to have a response to ensure that everyone is safe.  I truly do understand that.  What I don't understand is why are there not responses that are taken sooner to ensure that things don't escalate to the point where young children with disabilities are being restrained by adults?  Where children with disabilities are being closed in official "time out room " spaces that are equipped with padded walls.

What I really don't understand is why as their mother I don't have the right to say don't do this to my child again.  Don't close them in rooms.  Don't hold them down with multiple adults.  It doesn't work.  It creates rage on their part.  It makes them fight you harder because they are scared.  It triggers a fight or flight response.  They become irrational as they fight you to get off of them.

I want this stopped.  It scares me.  I don't want to think of my child scared at school.  I don't want to think of my child needing me and me not being to help them.  I don't want my child restrained or placed in a room where they are alone and look like criminals.

If you look at the research Black children are restrained, placed in time out rooms and suspended more frequently than white students.  Based on my experience and the experience of my boys, this appears to be true.  That is hard to read.....and easy for me to write when we look at the hard facts.  Unfortunately Black children are seen as more threatening often and so the adults feel a need to ensure that they have control of the situation and as such they use the time out space or restraint to ensure that all are safe.

If you know my children, you know that my boys are all amazing.  If you know my family you know we have had and continue to have our struggles.  I am honest about that.  However, you also know that I have parented them always as a single mom.  I can tell you that I have never sent my boys to their rooms as a consequence for behavior struggles.  Why?  Because being separated from our family creates a challenge for all 3 of my boys and it doesn't change behavior for the better.

Now, we can certainly pick this apart- is it because they are adopted and fear separation?  Is it because they worry about being alone?  Is it because they have each spent time in the time out room at school and they are scarred from these experiences?  I don't know and it really doesn't matter.  All 3 of their educational teams have been told that being in a time out space scares them and does not improve their behavior.  All of my child care providers know this as well, so instead we use other options.  We often take a break together, or they take a break outside- bouncing a basketball, going for a bike ride or finding some other way to get their energy out.

Given that their educational teams are aware that being placed in a time out room or in some other space alone doesn't work for my boys, why is this the response of the educational team?  All of my boys can be talked through their challenges but it takes time.  It is not easy and when as the adult I am struggling it can be really hard.

However, the perk at school, that is different than home, is that each of my boys are in classes with multiple adults.  When I teach educators the tricks of working with children, one of the most important tricks is to "tap out when you are frustrated".  The adults working with my boys need to tap out.  They need to tap out BEFORE things get out of hand.  They need to tap out and ask for help so that things don't get too big!!  They need to tap out so that they do not feel a need to have my boys spend time in a time out room with the door closed or holding my boys in a restraint.

Once my boys are over the top angry they are at a point where they cannot hear.  I have seen them at this point and it can be scary.  However, upon looking back at the situations where I have seen my boys like this, it happens because as the parent I didn't read their responses correctly. 

For David, it is a cry for help.  We see these behaviors before he has a seizure.  These behaviors are his cry for help. It can happen  minutes before a seizure or hours before a seizure, but it has happened since he was in preschool.  He would tear about the classroom and then he would have a seizure.  If an adult was with him as we saw this behavior we could often stop the destruction once he knew he was safe.  However, if we misread his cue and used discipline rather than offering him comfort things would get worse.  He has few words and cant describe what he is feeling so it is up to the adult to offer him comfort and to stay nearby until the seizure happens.  Once it occurs he quickly picks up the room and is back to David and rests for a time.   His Doctor calls this a "davidism" as it is uncommon behavior for before a seizure, but when things happen over and over and over again at some point we have to accept that David is trying to tell us something and we have to help him rather than place him in a time out space.  He has torn the drop ceiling from the time out room this year because he was scared.  At some point we have to accept that what is happening to him at school isnt working and we have to try another method.  David needs an adult nearby, not to be alone.  Imagine knowing a seizure is coming and trying to communicate that and being placed alone in a space?  Imagine being David's mom and knowing that one day while you are at work this is happening to your child? 

 For Matthew and Jacob, it is almost the same.  While they don't have seizures their brains are unable to continue processing information and so when they are angry they need an adult to calm the situation.  They need an adult to step back, and give them space.  Matthew does well if he is allowed to sleep.  Jacob does best if he is allowed time to snuggle or to do some sort of physical exercise.  Neither do well when they are placed in a time out space.  Both truly explode when they are held down.

Matthew thankfully has grown out of this stage and has become truly an incredible young man.  Given the growth in Matthew I know that Jacob will follow and he will thrive, but how many times will school traumatize him before he grows?  What will be the long term implications of him being held down at school?  Placed in a time out room?

What would it feel like to you as a child to be held down by adults?  To be placed in a time out room?  What would it feel like to you as the mom?

We have had experiences in  5 schools with time out rooms.  Experiences in 3 schools with one of my boys being restrained.  This is happening at your child's school.  It is happening to their friend, to their acquaintance, to their peer. 

According to State Education use of restraint and the time out space is to be the "last resort".  I can tell you that our schools are getting to the usage of "last resort" more frequently than you know.  Considerably more frequently for non-caucasian students.  I can tell you that I am scared. 

Sending your child to school should not come with fear, but today it does. 

This was a hard blog to write, but my guess is that you didn't know how frequently restraint and time out spaces are being used in your school.  And the only way to advocate for change is to share our story.  Please do not judge my boys.  They are truly no different than your children.  Sure, they get mad.  Don't your kids?  For the most part they are awesome, sweet, very kind hearted boys.  They get angry, and need help, but as an educator, I know all kids get mad sometimes. It is how we as the adults help when kids are mad, and to me this is what needs to change.  We need to support all children so that they learn to manage their mad without fear of being placed in a time out space or being restrained.

Teaching unpredictable kids

Jacob and Matthew have both been diagnosed at this time with drug/alcohol usage from their birth parents while they were in utero.  What this does it is essentially creates "swiss cheese brain".  In many situations life clicks and the boys do great.  They can understand all that is being said, respond to it appropriately and things are great.  However there are other times when life just doesn't go as planned and they are confused and it is up to the adults in the situation to monitor and make changes so that life remains calm and the situation is once again under control.

Yesterday was a perfect example of Jacob dealing with "swiss cheese brain".  Jacob and a friend were hanging out and they had a truly awesome time.  Between games of basketball, some time on the xbox and just being 11 year old boys all was fabulous.  However, Jacob and I had been to the grocery store earlier in the day and Jacob had decided he wanted pizza and chicken wings for dinner.  We bought these items and since my plan was to be home most of the day, this seemed to be an easy plan for dinner.

However, life happened and at 6:00 the boys and I were happily at the park playing basketball with Jacob's friend.  He was happy and all was going great until it was time to leave.  Jacob then became frustrated..  Leaving his friend was tough however, once we got into the car he was also clear that he was angry because now it was 6:30, we had to go pick up Matt from a friends house and it was getting to be too late for me to cook chicken wings.  To Jacob, THIS was the part of the day which became unmanageable to cope with.  I had promised chicken wings, we had bought chicken wings and we were having chicken wings for dinner, in his mind, no matter what!

This is when it became important for me to figure things out as the mom.  I now had a few choices:

1. Go head to head with jacob and tell him that chicken wings were not even close to an option
2. try to figure out a way to make chicken wings
3. talk Jacob through our choices and allow him to help me make a decision.

Yesterday I had time, patience and energy on my side and I decided that I would go with option 3.  Jacob and I talked and I told him that after we picked up Matthew I would go home, see how long it would take to make the chicken wings, but while they were cooking he had to shower and get ready for bed as we would be eating later than usual and I would need him ready for bed so we could transition quickly after we ate.

Yesterday this plan worked.  We talked about all of the fun he had with his friend all day and that if I had been home cooking chicken wings he would have missed out on the fun.

Yesterday his swiss cheese brain allowed for Jacob to hear me and respond and together we worked out a reasonable solution.

Yesterday the day ended perfectly.  Yesterday we won the swiss cheese brain battle!

Off to the Children's Museum- Day 2

If you are ever in Indianapolis the Children's museum is a place that is not to be missed.  While I have heard from some family members that they have gone without children, I am not sure I would say it is THAT incredible, but it is definitely one of the best Children's museums I have ever seen!

 

Before we even started in the actual museum we checked out their new sports museum section.  For Matthew and Jacob this meant over an hour of basketball statistics, basketball shooting, and seeing some incredible basketball paraphernalia.  For David and me it meant looking at the nascar and Indy 500 cars and checking out all of the other cool sports information that had been gathered and was on display in this section of the museum.

One of the best parts of this section was that they had a place where you could try your hand at being on the "pit crew" for a race car.  While we had a blast taking off the tires, filling the gas and putting the tires back on, and trying to race the clock, my favorite part was truly watching dads and their preschoolers trying to do this together.  The clock showed the best time of the day- under 10 seconds......however, this does not show that these tasks were done RIGHT in 10 seconds, or done WELL in 10 seconds, it just shows that they were done in 10 seconds.  It was awesome to watch a group of dads get their testosterone in a bother as they tried to help their little one beat the 10 second top time of the day.  (spoiler alert.....it wasn't possible!)

After our time in the sports section we were off to check out the dinosaur exhibit.  This was an incredibly well done exhibit. They mixed dinosaur models with hands on dinosaur digs, and scientists who were there to meet and talk to the kids.  We met a museum staff member who was from East Greenbush, NY who was cleaning an actual dinosaur bone.

I am not sure who was more intrigued by this, Jacob or me!  Truly he and I stood there for over a half an hour and must have asked 6 times whether it was a REAL dinosaur bone or just a fake one!  The scientist pretended each time not to be annoyed by our question, but after we asked 6 times I got the hint that it was time to keep on moving!

After the dinosaurs, it was off to check out the second floor of the museum!  I could not believe it was past 12:30 and we only had 4 hours to finish 3 more floors of the museum~!!!

One of my favorite parts of the museum was they had a section that was devoted to children who made changes in the world.  The section included Anne Frank, Ruby Bridges and one of my favorite children heroes ever, Ryan White.  You might remember that Ryan White was a young teenager with Hemophelia who was diagnosed with HIV in the late 80's. 

His story always touched my heart and so to see his story in this museum was very  powerful to me.  The boys went off to check out the race car exhibit which was next door while I took a some time reading through Ryan White's story, seeing the items of his that are showcased in the museum and just going back to that time in our history when a teenager having HIV was the major news.  In some ways that seems like such a powerful contrast to our teenagers today.  Today, teens are so accepting of bisexual, transgendered and openly gay peers at least in the North East, and yet there are still school shootings which are occurring on an almost daily basis across the US.  We have come so far, and yet we have so far to go.

We finished the museum on the 4th floor where Matthew fell in love with the exhibit on China!

David found his favorite spot also on the 4th floor, the water table.  There is something simply peaceful and relaxing about playing in a humongous table of water.  As you build the barrier, then open it and the water rushes down.....it was such an incredibly peaceful way to play.  After a busy day at a museum, for David the water table was the perfect ending!

As the museum was closing, we headed back one more time to see the sports exhibit.  I decided I had to try my hand at a basketball shoot out with the boys.  I am pretty sure I made the day of one of the dad's when I beat Jacob by 6 points and hooted and hollered with excitement.  (winning with grace is a skill I am still working on).

We ended our day back at the hotel once again hanging out and enjoying some pool time.  Matthew decided he was "too cool for the pool" and instead hung out in the lobby.  Only Matthew could make friends with a guy who lived at the hotel.  He of course got the entire story of this man's life.....the man was living at the hotel for 2 years while he was working in town.  Matthew has decided that this sounds like the perfect life....in all honesty, it sounds pretty ok to me too. This hotel included a hot breakfast daily, AND a free cocktail hour each night.....AND someone else cleaned the room each day.  ( remind me why we came home again???????)

Jacob convinced me that we had to carry on our nightly tradition of Steak and Shake milkshakes so in the pouring rain I went out for milkshakes for the boys.  It became a fabulous way to end our nights, hitting the pool, milkshakes all around and then falling asleep excited for the adventure of the next day!

  

Indianapolis......for vacation?

This past week was spring break and our family was headed to Indianapolis.  We had plane tickets that had to be used, and so I gave the boys the chance to pick a place that they wanted to go and then started looking for a flight to get us there that didn't cost any more than the plane tickets.  Jacob was born in Indiana and felt strongly that he needed to go back to see Indiana.  It sounded like a perfect adventure, tickets were purchased and we were off!

On our itinerary were the State Museum, Children's Museum, NCAA museum, The Indy 500 track and Museum and the Zoo.  As we were flying into Indiana and we were asking for advice for other places to see or things to do, all people kept saying was "you came to Indiana?  For vacation????"  The more people said this, the more nervous I got, but I have to tell you, they couldn't be more wrong!  We had a phenomenal 5 days!

Our first day started a little rocky.  In my mind vacation is about resting and relaxing, so we didn't get moving until 10:30.  We headed out of the hotel and hit up the State Museum.  Based on the website, I assumed this would be a full day trip, but figured, in case it wasn't we would hit up the zoo or the NCAA museum if we finished early.  Unfortunately, life in Indiana is a little slower paced than in upstate NY.  While we loved the State Museum, it only took us 3.5 hours to get through and so we headed out looking for an option for our afternoon.

The NCAA museum is closed on Mondays.... the zoo closed at 4:00 and it was already 2:30......what had been a great start to day 1 was quickly becoming rounds of "this is supposed to be fun mom", " now what are we going to do mom?" and so I had to find a quick solution......new city......my idea.....let's go for a drive and see where life takes us!

Thankfully, in downtown Indianapolis there are tons of major sports teams.  We drove by the Colts stadium,  the Packers Arena and stopped in to see the Indianapolis Indians stadium.  I am not a major sports fan, but seeing a stadium is a pretty cool deal!  I think I was likely way more excited than the boys!

As we then wandered through Downtown Indy, we realized life closes there around 4:30.  While looking for the State house, we accidentally wandered into the court house ( one is located at 200 WEST Washington Stand the other is located at 200 EAST Washington St.  I am certain I cannot be the only one to make THAT error!

In talking to one of the security guards I realized that during Jacob's adoption proceedings the judge had been on the phone with me from the very building we were now standing in.  In Indiana the adoptive family does not have to come back to Indiana to finalize the adoption.  Given the challenges of bringing 3 young children to Indianapolis for a 10 minute court proceeding, at the time I had decided to simply attend by phone.  Now, suddenly 11 years later to find myself in the court house where Jacob had become a permanent part of my family brought up a lump in my throat. After taking in a moment to breathe in the complex emotions I was feeling, we wandered back outside and headed for 200 West Washington Street to try to get a tour of the State house.  Of course, that had now closed as well, but on our walk we stumbled upon the Observatory which is located inside the Soldiers and Sailors Monument.  While the observatory was closed, the boys loved climbing around on the monument with a group of kids and I was able to mentally add the State house and the Observatory to our list of "to do" activities for the week,  and take a moment enjoying downtown Indianapolis!

We also walked through some pretty cool shops, a comic book store with an awesome salesman with self proclaimed ADHD who kept the boys busy for almost an hour, and a store called Soda Fizz which was awesome to see!

Finally, we decided no first day in Indianapolis was done without a milkshake from Steaks and Shakes, so with amazing milkshakes in hand, we headed back to our hotel calling Day 1 a success!  The boys finished the day with a swim in the pool (or for David the hot tub), I used the chance to check out the hotel workout room, and then we took some time planning out day 2 in Indianapolis!