Tag Archives: Just Joshin’ Ya

Becoming an adult in the eyes of the law ~~~

Originally posted 01/04/14 by Just Joshin’ Ya’s Mom – Karen Gregoire

Just Joshin' Ya

Josh with his brand new, court-appointed guardians, big brother Tim and Dad!

Do you have a child with an intellectual disability or developmental delay?  Have you thought long and hard about whether or not to apply for guardianship of your son or daughter once they turn 18?  So did we!  Here is the process we worked our way through with Josh.  

There’s a few very important things to remember while you’re reading this blog ~ 

1)  All states have different rules.  
2)  Every family has to make their own decisions about what is best for them and their child.
3)  I am not a lawyer nor do I profess to be one.  I am also NOT someone you should take advice from without consulting the “real” professionals before making decisions that involve your loved one.  
***For information regarding the laws in the state or country in which you live, you should contact your local agencies and/or an attorney.

With that said, we live in Massachusetts.  In Massachusetts, when you have a child with a disability, whether determined at birth or afterwards, your child is eventually connected with the Department of Developmental Services (the new name for the old Department of Mental Retardation), since it seems we can no longer use the word retarded or retardation ~ *another blog entirely*.  Since Josh is 18 years old and my memory is that of a 40-something year old woman, I don’t even recall how we initially got involved/connected with DMR – sorry DDS (old habits die hard), but I know he was registered (maybe once we began receiving Early Intervention services) as a person who would eventually need the services of the Department of Developmental Services.  

In our state, until the person with a disability turns 22 years old, it is the responsibility of the early intervention provider, then the school systems to provide the necessary services, i.e. speech therapy, occupational therapy, physical therapy, social groups, etc.  Josh never qualified for any services directly through DDS, until he turned 18 years old this past May and became a legal adult in the eyes of the state, then things started to change.

The school system notified the state (DDS) that Josh would be turning 18 in May of 2013.  DDS contacted us and came out to the house to do an in-depth interview and I mean IN-DEPTH……a binder full of forms with questions after questions after questions about what Josh could and could not do.  We also provided the state with all prior psychological testing, IQ testing, adaptive behavior testing that had been performed previously by the school system.    

If you have a child in the school system, you know about these tests!!  In our state, they perform a full battery of IQ and adaptive behavioral testing every three years (to prove that your kid still has a disability)…..as if the Down syndrome was magically going to disappear.  These tests are VERY TOUGH, as a parent, to read through.  ~~~ If you read my first blog and saw where I mentioned the rollercoaster ride…..these tests are the part where the rollercoaster is going really, really fast, downhill, takes a sudden turn where you almost get thrown from the car you’re riding in, then snaps your neck back in the other direction, only to throw you down another hill where you fall out, sit and cry and scream and cry and use swear words and THEN collect yourself, stand up, dust off, and say some more swear words directed at the people doing the tests about how they don’t know your kid and blah, blah, blah, blah.  These tests are like a punch in the stomach kind of thing – you work your butts off for nearly three years, you got your kid talkin’ and walkin’ and making great strides (so you thought) and then someone comes in and compares your kid to what typical kids their same age are doing and the reports come back with words like *delayed *impaired *mild *moderate *severe *IQ *adaptive behaviors *and all these other things that make your jaw drop in disbelief.  Tom and I honestly got to a point where we would read these reports, literally laugh out loud, then look at each other and says things like “hey, in case you didn’t know…….you’re kid is delayed!” 

These “tests” are the absolute worst UNTIL……UNTIL you decide that they do not define your kid and you can turn the tables on the test givers!  :)  Sitting at an IEP meeting for Josh and his speech therapist suggests that the school system provide him with speech therapy (maybe) twice a week.  We’re holding, in our hands, our trusty little TEST that THEY administered that says my kids speech is “severely delayed in expressive and receptive language skills!!!”  Ummmmm, no I don’t think we will accept your offer for speech therapy twice a week, but we would like Josh to have speech therapy EVERY SINGLE DAY HE IS IN SCHOOL, FIVE DAYS A WEEK.  What do you think they said to our request?  That’s right.  Every single day, five days a week, Josh would have one-on-one speech therapy for 30 minutes, 2 1/2 hours weekly, not 1 hour.  That is how you take those tests and turn them around to benefit your child and HELP YOU to advocate for what you think your child needs.

We finally hear back from DDS that he has been approved for their services as an adult.  We then went and applied for Social Security Disability Benefits.  Josh never qualified for SSI prior to becoming “an adult” because his qualification was based on his parents’ income and we have always been a two-income household.  Once he became an adult, we applied for Social Security and he was approved.  If you are going to do this for your child/adult, be careful to watch timelines.  The Social Security Administration only books appointments out 3 or so weeks and will only give you an appointment within the four weeks before your child turns 18.  So be patient with the process.  It does not move quickly.  Luckily, we had a great interview and liked our SS coordinator very much.  

Even though DDS has approved Josh for adult services, they do not play a role in any of his services until he turns 22.  The school system/city is still responsible for whatever his program might look like.  I am only in the very beginning stages of this part of Josh’s life, but I can already see a bunch of holes and gaps and places where he could fall through the cracks.  *Another blog soon!

The Department of Developmental Services then began to guide us through the process of petitioning the probate court for guardianship.  Now guardianship, as some of you may know, takes away your young adult’s rights.  So this decision does not come without putting a lot of thought into it.  We made our decision based on a few hypothetical situations and things we have seen in the news.  We knew we wanted to protect him from financial and/or medical harm.  We know that Josh is not capable of making appropriate decisions regarding his finances or his healthcare, so the decision for us was pretty simple.  There are newer ways of doing things out there and I would encourage anyone reading this to look into all the different possibilities that exist.  We simply chose to petition for guardianship.  

DDS did EVERYTHING for us and we did nothing except follow a timeline.  The first course of action was DDS “referring” us for a psychological evaluation which would include Josh being interviewed separately from us.  This is called a CTR (Clinical Team Review).  DDS made us an appointment, we showed up, two very lovely gentleman, one a psychiatrist and the other a social worker, brought Josh to their office for an independent interview, then Josh returned to the waiting room and it was time for mom and dad’s turn to be interviewed.  From the time we walked in to the time we walked out…..30, maybe 45 minutes.  

Just Joshin' Ya

Josh set off the metal detector as we walked into the courthouse. As the guard approached him with the “wand”, Josh did a ‘spread um’ sort of move….even the guard was cracking up!

The CTR report gets sent back to DDS, DDS calls us and says the recommendation is clear that guardianship would be beneficial.  We then waited to hear.  They called us with a date to appear in court.  ALL OF THIS IS FREE OF CHARGE.  You can hire your own attorney, but it is our understanding that things will not move any more swiftly by paying a private attorney.  We just had our court date on 12/16/13.  We made the decision that dad, Tom and big brother, Tim, would petition the court to be Josh’s guardian and I, mom, would apply to be Josh’s Adult Family Care Provider (more info below).  

We met our DDS-appointed attorney at the courthouse.  Our attorney, Josh, Tom and Tim stood in front of the judge.  The attorney told the judge that mom was in the courtroom and she asked me to come and stand before her with my family.  She asked Josh “who is this lady?”  Josh replied, “this is the wonderful girl, Karen.”  OR, in other words, mom!  The judge laughed.  She read through the paperwork, she asked Tom and Tim if they understood what their responsibilities would be, they replied yes, and she said petition granted.  It was as simple as that.  I’m sure this probate judge sees some absolutely crazy things in her courtroom and for a family to show up with all their T’s crossed and i’s dotted, with all family members present, with her ability to have a nice discussion with Josh, made her job very easy that day.  

Now we have peace of mind that should anything medically happen to him, dad and Tim can seek appropriate medical care and we know that Josh cannot be taken advantage of regarding his finances.  In our book, there was no other option and the choice was very easy for us to make.

Just Joshin' Ya

Waiting in court for our judge to come and for our hearing to begin!

As for the Adult Family Care Provider stuff mentioned above, this is a program run by our state and I know many other states offer a very similar program.  It used to be referred to as an Adult Foster Care program.  When a person with a disability becomes a legal adult and is unable to take care of themselves from an “activities of daily living” point of view, someone has to care for them.  In an attempt to keep people with disabilities in their communities and out of placement in group homes, nursing homes, or institutions of any sort, the program will pay a family member to render care and I have very recently been approved to be Josh’s Adult Family Care provider.  If anyone has specific questions about this program, you can private message me on our Facebook page and I will try to help you with this.  However, we were also guided through this entire process by the Department of Developmental Services.  

So I think that’s it for now on the “becoming an adult” process and how local agencies play a much bigger role once a person with a disability reaches the age in which the world views them as an adult!  Again, please feel free to contact me privately on our Facebook page.  For those of you who know us, I’m always there checking in!  :)  

*Also, anyone who knows me well, knows to expect to find at least one typo on my writings.  It’s just that the thoughts flow faster than the fingers.  No need to correct them, unless it changes the context of the content.  I know they’re there somewhere!  :) 

WORK IS A REQUIRMENT

         ~~~ WORK, in this house, is a REQUIREMENT ~~~

The purpose of this post is not to debate sheltered workshops, but to give those who are interested, insight into the vocational process we have experienced with Josh.  His “resume” of sorts.  

These are OUR OPINIONS & OUR EXPERIENCES, nothing more and nothing less.

I will start by saying that Josh will never be allowed to stay home on a
daily basis unless he is sick.  I have to work, dad has to work, big brother has to work, AND Josh has to work.  Plain and simple, Josh has to work just like the rest of us.  Even if he were to be home all day long WITH a list of chores to be accomplish everyday, he still would go crazy (as would I).  His mind is very active and he needs something to occupy it.  So, work, in this house, is a requirement.    

You first must understand how the process works here in our state.  Every state is different.  Any educational or vocational program we design for Josh is paid for by the city that we live in until he turns 22 years old.  Josh only turned 19 yesterday, so we continue to work with the city to develop a program for Josh.  

In very simple terms, the city we live in PAYS for whatever his program will include and there are limited options available to us.  Once he turns 22, the state will take over responsibility of his vocational program, meaning they take over paying for it and those options will be limited as well, although they are currently in the very early stages of expanding the options that will be available to Josh in three years from now.  

The first job Josh had was as a volunteer at our local humane society.  He worked in the adoption center doing laundry, sweeping and mopping floors, and walking and playing with the dogs and sometimes the cats.  There was NO PAY involved for doing this job.  In fact, Josh needed supervision during the time he spent at the shelter and we, mom and dad, had to hire a job coach and pay for her services out of our pocket.  He was ready to work, had the skill set to do the work, but still needed the supervision to remain safe.  There was no program, at the City or State level, that would pay for a job coach.  Fortunately, we had the means to do this for Josh, but coming up with “extra” money is never easy for a middle class family.  Josh eventually became bored with that job and we ran into scheduling difficulties, so that job came to an end.  

Josh’s next job was assisting two custodians at a local elementary school at the end of the summer helping to get the school ready for the fall.  Another job that he did for NO PAY.  We again had to pay for a job coach to assist/supervise him.  

His next job was for a local zoo, also a volunteer position.  Again, NO PAY.   This job was through the school department, so his job coach was paid for by them, thankfully.  

That bring us up to date.  Josh currently works at a sheltered workshop
part-time.  He attends school in the morning and work in the afternoon.  HE LOVES IT AND HE GETS A PAYCHECK.  This is his first paying job and again, he loves it.  He is happy.  He is fulfilled.  He is proud.  He is gaining skills.  He is exhausted when he gets home.  It puts money in his pocket.

We consider everything Josh has done up until and including now, stepping stones, resume building.  Josh’s next step, which will begin June 9th, will be working with an enclave (a small group of people with disabilities with one job coach to assist/supervise/train).  Just another step towards independence.  With every job, Josh has learned valuable skills.  

We want our kids to be accepted and included by society, but sometimes we, their family, look beyond their WANTS and make decisions for them based on what we think is right.  It just might be time to start listening to our loved ones with ID/DD about what makes them happy.  We absolutely feel Josh is capable of making decisions about where he wants to work.  HE MADE THE CHOICE TO WORK FOR GOODWILL.  He has had other experiences to give him an idea of what the possibilities are.  He loves Goodwill and I am, quite frankly, becoming disgusted with the bad press I see about sheltered workshops. 
Before you jump on the bandwagon of negative perceptions, are you informed about what this particular agency and agencies like them can do for our loved ones?  Has your loved one actually had the experience of working for one of them?  

I would caution people not to judge what they have not experienced. 

Are you aware that .82 cents on every single dollar of merchandise sold in their stores goes directly back into the workshop program Josh participates in?  Did you know that Savers (Big Brothers/Big Sisters) gives .02 cents on every dollar back to their sheltered workshop?  

Do I think improvements need to be made?  Yes, always, no matter what
subject we’re talking about, nothing is perfect and improvements can always be made.  BUT, I am telling you from experience, our experience, Josh loves his job, takes his job seriously, is gaining skills, and is truly loved by the people around him, coworkers, job coaches, and supervisors alike.  Is a sheltered workshop the vocational answer for everyone with ID/DD?  Of course not!!  Is it right for some?  Absolutely!  Should the sheltered workshop be an OPTION for families?  Yes it should!!

I am finding it increasingly difficult to not speak my mind about the
positive experiences we are having with Goodwill when all we see or hear about is how “bad” the sheltered workshop is for MY kid.  To all of you naysayers - YOU’RE WRONG!  Based on our personal experience with Josh and Goodwill, YOU ARE WRONG!

JOSH IS DRIVING

I don’t have any one story that pops into my mind that I can share with you about Josh.  Specifically, because I share daily stories about his life on his Facebook page, Just Joshin’ Ya, so it would seem that I’m all storied-out, OR NOT! 

As of late, I’ve begun to realize that Josh has started to take over the driving responsibilities “on his own road”; whereas, once upon a time, dad and I were driving and it was our road.  Josh is currently most definitely taking the wheel from us, slow but sure.  The transition HAS begun, whether I like it or not, and I hadn’t even realized it until this last month when Josh was sick with a bug after a bug after another bug.

During the month of February right into March, so many amazing things happened in the face of him being sick.  February 7th, Josh, dad and myself headed on over to Josh’s school to meet with the rest of the team to develop his IEP for the coming year.  He voiced lots of opinions, more than in any other year.  When we left the 2 hour meeting, we stopped to get a quick lunch and headed home to eat.  Within 30 minutes, he was vomiting and other things followed shortly after that.  No need to be descriptive, you get the picture.

THIS IS WHEN JOSH STARTED TO TAKE THE WHEEL FROM ME AND DAD, LEAVING OUR ROAD AND DRIVING OFF ONTO A NEW ROAD THAT HE HAD JUST DISCOVERED FOR HIMSELF!!! 

I begged and pleaded with Josh to sleep upstairs in the spare bedroom right next to ours, but he flat-out refused and insisted on sleeping in his apartment (in the basement).  I was so worried.  What if he has to vomit again?  What if he can’t make it to the sink/toilet?  How will he come and get me if he needs me while he is getting sick?  What if he this, what if he that?  He just kept reassuring me…..”mom, I’ll be fine” AND he was!!  He made it through the entire intestinal bug without much, if any, help from us.  How very sad?!?  How very wonderful?!?  Such mixed emotions for me.  The question of……how would he take care of himself if he was sick and lived on his own……was answered without a single doubt left in my mind.  Josh answered that question loud and clear!

Throughout the rest of February and into March, he continued to be sick on and off.  He would recover from one bug and catch another.  This past week, his symptoms flared again and we brought him to see his ear, nose and throat doctor who diagnosed a pretty significant sinus infection.  He prescribed Josh an oral antibiotic and probiotics.  On the way home from the doctor’s office, Josh informed me, insisted, no more like demanded, that he was “going to keep my medicine downstairs and take it myself!!!!” 

Really, my kid is going to self-administer his own medication???  Could I trust him to do it the right way?  Well, we were about to find out!  We went over and over and over the “rules”.  Pretty easy dosing actually, one antibiotic and one probiotic around 7:00 a.m. and one of each again around 7:00 p.m.  My instructions were met with comments like, “well, I don’t know if I’ll be up at 7:00 in the morning, so whenever I get up, I will eat my breakfast and then take my pills.”  Seriously, how could I argue with his logic? 

I don’t know if moms really ever get used to having to untie the apron strings, but I’ve been having to do it his entire life, one baby step at a time, and it never seems any easier, no matter what stage he’s in.

Josh is taking the wheel.  I’d love to tell all of you that he’s being nice about it and asking me politely to get in the passenger’s seat, but the reality is….he is taking the wheel and shoving me into the backseat, if he even lets me ride in the “car” with him at all and, in most cases, he does whatever is required to get to the same destination that I would have, just taking a different route. 

More and more every day, I can hear him in my imagination yelling at me with delight in his voice ”I’m driving now, buckle up, it might get bumpy, but it’s gonna be fun” and I really couldn’t agree more.  What a ride it has been so far, 18 years come and nearly gone ~ where has my baby gone?! 

I look forward to every new day that he puts a new demand on me to “let go ~ just a tiny bit more.”  I don’t feel like it’s going to be long before we are wishing him “safe travels” on the new road that he has discovered and demands to travel solo!

Listen to me

In the past few weeks, maybe a month (time goes by so fast and is so hard to keep track of), Josh has been expecting more from those around him.  He has ‘all of a sudden’ developed an expectation that he be given more respect.  He’s actually been DEMANDNG people pay more attention to him when he is speaking.  GOOD FOR HIM!!!!!  This is in no way a bad thing and a great stride towards self-advocacy!  This new expectation he has, this demand from him is something pretty new, but today I question if this maybe has been something building up inside of him for many, many years and today was the day he figured out how to let the rest of us know that HE WILL BE HEARD!

Recently, he blurted out to dad “you’re always ignoring me, you’re always on your phone.”  Dad is self-employed and is on his phone a lot for his business, but NEVER ignores Josh (he just multitasks)!  To me, Josh has demanded, “mom, look at me!!!!”  When I’m at my computer, whether I’m working (I work from home) or managing his Facebook page or advocating for someone with Down syndrome or helping to get dogs adopted ~~~ He doesn’t care what I’m doing…..to him, I’m just “not looking at him”!!!!  During his daily phone conversations with Grammie, I hear him say, all the time, “no Gram, LISTEN TO ME!!”

Josh has always struggled with a significant delay in his expression language skills.  Receptive language, right on.  Finding a way to express himself, difficult.  He adapts very well, such as finding alternative words to get his point across.  Example:  A Hospital Truck = Ambulance.  If he can’t say it, he will find a way to get his point across using a multitude of ways to make you understand, however, this must be very difficult for him when he finds himself in a spur of the moment, spontaneous conversation with someone.

Today, an issue arose at school and when I picked him up, as he climbed into the truck, he exclaimed with exasperation, “he just wouldn’t listen to me.”

Josh has been sick.  Three weeks of sickness as a matter of fact.  He saw the doctor yesterday who found nothing wrong and told him, “you need to go back to school and work tomorrow.”  Today, of course, when he woke up feeling like crap, he informed me that he was not going and was staying home.  I posted about this on his Facebook page this morning and we ended up negotiating.  The plan was agreed on that he would return to school for his normal half day and instead of him leaving at 11:30 to go to work, I would pick him up, he could come home and spend the afternoon continuing to rest and recuperate.  THAT WAS THE PLAN.

What is it they say about the BEST LAID PLANS???  Josh and I are very similar in our organizational skills….all the ducks MUST be in a row.  If your ducks are not in a row, you are bound to find a dead duck somewhere in your vicinity ……. probably run over by a car!  I don’t like my ducks to be dead!

Today, as a part of Josh’s half day of school/no work plan, mom wrote a note that Josh carried with him to school, Josh wrote his own note to his teacher, and mom e-mailed his teacher.  However, because some paraprofessionals float between classrooms, some of the information didn’t make it to everyone that Josh would be leaving at 11:30 and going home, rather than to work and would be picked up by mom.  NO BLAME ON ANYONE.  These are the types of situations that teach us something and today we learned a lot!

So, back to this morning, after all notes were written and e-mails sent, I informed Josh that I WOULD NOT be coming into the school to get him.  Really, Josh has been navigating his school environment for a solid 10 years without issues.  There was really NO NEED for me to get out of the car and go into the school to get him.  So, I explained to him that I wanted him to come out to the car after he was done with lunch.  He expressed concern, “they’re not going to let me leave by myself.”  I explained to Josh that I had sent his teacher a message about his concern and that he was old enough and independent enough that he could certainly come out to meet me at 11:30.  THAT WAS THE PLAN! 

After Josh finished eating lunch in the cafeteria, he apparently was just standing there.  An aide asked what he was doing and Josh replied “I’m waiting for my mom” or something to that affect.  The aide told Josh that no parents ever come to the cafeteria for their students and he should go back to class.  Josh got upset and perhaps attempted to explain the situation that he was leaving to go home with mom instead of to work, but there was some miscommunication and the aide was not aware of THE PLAN.  He instructed Josh again to just go back to class.  When Josh arrived back at class, his teacher said “what are you doing here, you need to go down and meet mom.”  A totally sick, exasperated, confused, and very angry Josh left his classroom to come down to meet me parked outside.  He had another encounter with someone else who upset him and he PUNCHED A WALL (more on that below).

When he walked out of the building, I could tell immediately that something was wrong.  I just thought he had a hard time getting through the day because he was still sick, but boy was I wrong.  I got quite the earful on the way home.  He told me everything I told you above and had some other choice things to say, including telling me that he punched a wall, which I didn’t really believe because, really, Josh, my sweet-natured, innocent Josh, punched a wall?  That didn’t even make sense in my head and didn’t register as something that really happened.

In any event, I just let him talk, all the way home, asking a question here and there.  It’s like being a detective and/or like playing charades trying to get a story straight.  The thing about Josh (and possibly a lot of people like him who have an intellectual or developmental disability) is that he ‘interprets a situation’ in his head and then there is NO WAY you’re going to change his mind about what happened.

So, long, long story short(er), we arrived home and I called his teacher and we spoke to her (on speaker phone at Josh’s insistence!!) and she spoke to the aides and we spoke to her again and everything was resolved.  However, as I was talking to her, I noticed his hand…..it was bruised and swollen and his knuckles are scraped and bleeding!!!!  OH MY GOD, he punched a wall???!!!!  I was in utter shock!

This is a great place to add that dad and I each had multiple conversations with him about why he is NOT allowed to express his anger in a manner that hurts himself or other people.  (The many stories of police misinterpreting the actions of people with ID/DD came flooding into our heads and we weren’t afraid to tell him that if he put his hands on ANYONE, the police were going to visit him and they would be very unhappy!!)  I told him how upset I was that his hand was hurt.  He kept telling me, every time I brought it up, “IT’S FINE!!!! ~~  THERE’S NO BLOOD!”  I explained that he could have broken a bone…his response, “yeah, I don’t care about broken bones and it’s not bleeding!”

So, now I am left to ponder what happened today.  Josh seems to have moved on!  Did I do the right thing expecting him to come out to meet me at the car independently, even though he voiced a concern?  Does everyone in Josh’s life need to SLOW DOWN and PAY ATTENTION so that they can ‘fully’ understand the story he is trying to convey?  Is Josh at a point in his life where people nodding their heads and ‘pretending’ to understand every word he says is acceptable to him?  What was the point of sending him to school today, when I knew he was still feeling unwell?  What could we all have done differently to help Josh navigate his day better and execute HIS PLAN without a hitch?

I don’t know all the answers.  I learned from Josh’s elementary school principal…..YOU CANNOT LEARN WITHOUT MAKING MISTAKES.  Even the best laid out plan doesn’t mean something cannot go wrong.  That is part of life and we all have to learn how to deal with that as an adult.  No matter how well you plan something, we should always expect the unexpected or, in other words, just because you think you’ve done all you can for a particular situation to go right, something can still get messed up!  THAT is the real world and today, Josh and I both got a reminder that we both have to learn to adapt to any given situation.

In the end, I think we have both recovered with an expectation that we will have many, many more days when the REAL WORLD YELLS ~~~~ HEY, LISTEN TO ME!!!!!

AN ABUNDANCE OF LOVE

“SOCIAL” ~ What does that word mean to me?  I guess the first thing that pops into my head when I think of the word social is “relationships.”  Josh has had so many over the course of 18 years, it’s really difficult to decide where to start.  

From Josh’s perspective, I think of family, friends, neighbors, school, work and social activities.  From my perspective, I think about relationships that I have developed because my son has Down syndrome.  If it weren’t for Josh AND Down syndrome, I never would have had the opportunity to meet so many amazing people!  The thought of that just makes me sad so I’m thankful our path has lead us here!  This is exactly where we’re meant to be!

I tend to breakdown our life with Josh’s by categories, so I’ll do it again here.  I think it’s easier for my brain to process where we’ve been if I break things into segments.  The one thing that remains CONSTANT, no matter what “category” we’re living in, everyone seems to fall in love with Josh.

Josh’s social relationships have run the gamut, from adults to peers and from those with a disability and those without.  His relationships have also come and gone AND come and stayed.  Some of them were parent encouraged and some of them he made on his own.  It’s a very interesting subject to think about and attempt to get down in “paper”.  

I will start by saying that I can instantly make a connection with another family who has a loved one with Down syndrome.  I have no problem approaching another family, no matter where we are.  If a connection is made great, if not, no problem, but I am drawn in to at least say hello.  My husband, Tom, likes to call this a “subculture” that we belong to.  We have made some very, very good friends by just approaching someone to say hi.  great connections have been made this way.  I don’t know why Tom and I react this way, but we do, feeling an instant connection.  We can’t possibly be the only ones?  :)  I will also go out of my way to have a conversation with an adult who has Down syndrome should I see them out in their community working or playing.  I feel blessed to have just a few minutes of their time to chat with them!

THE EARLY INTERVENTION Years

Josh participated in the typical early intervention services in our home, as well as attending a play group several times weekly.  Josh did not make friends in this stage of his life, other than the peers he played with during his group participation.  However, mom made a life-long friend during this stage of Josh’s life.  His occupational therapist, Irene, and I became partners, a team.  We knew when to push him and when to back off.  She had my blessing to push as hard as she felt she needed to ~~ mostly because he was stubborn and very, very silly.  It was important for me to find a balance between being tough and being fair.  Irene and I made that connection and were always on the same page.  I am pretty sure she fell in love with him and his sense of humor!!!  From the time Josh moved on from EI services at the age of 3, we knew we could call Irene whenever we needed her and she would always be there for us!  We feel so blessed that she has remained a part of our lives and continues walking with us on The Road We’ve Shared

THE pRE-SCHOOL YEARS

The same exact situation occurred during Josh’s time in preschool.  He had friends while he was school, but they did not carry forward into the next stage of our lives.  However, I made a very good friend, Josh’s teacher, Ms. Margaret.  This is another professional who fell in love with my kid, dedicated herself to her students, and went way above and beyond the call of duty.  She is someone with whom I developed a mutual respect and friendship with.  Ms. Margaret now has three beautiful kids of her own and I love that I can call her my friend.  From what I hear, Josh is often a topic of conversation in their household…..lots of stories of his younger days to be told; just Ms. Margaret teaching her kids that everyone is different, yet we’re all the same!  She also continues to walk with us on The Road We’ve Shared!

THE Elementary school YEARS

This is a biggie, since Josh spent seven years in an inclusive environment!!  Josh had a one-to-one paraprofessional, Ms. Mayra, who worked with Josh throughout his elementary school years…..yup, all seven years!!  <—- THAT is dedication!!!!  After Josh graduated from grade 5 and moved on to middle school, Mayra and I became very close friends and have remained the best of friends for the past seven years, going to ball games, on trips and always making time to have coffee on Mayra’s way to school in the morning!  :)  A huge and heartfelt thank you to Mayra for being on The Road We’ve Shared with Josh and I for so many years!
Josh also made two very close friends while in elementary school.  Jacob was Josh’s BEST FRIEND.  They did soooooo much stuff together, swinging, sleepovers, the circus, swimming, camping and they remain friends today!  Even while Jacob is busy preparing for college, working two jobs (at one point) and finishing up high school with honors, he still finds the time for an occasional game of Wii bowling.  :)  There is nothing that makes a mom’s heart smile like watching both these boys grow into young men.  So very proud of both of them! 

Dominique was paired up with Josh quite a bit through their years together in elementary school, as Dom seemed to be able to pick up on Josh’s speech better than most.  He was nearly non-verbal back then and used a lot of sign language to communicate, along with sound approximations, a communication book, body language and gestures.  Dominique has decided to pursue a career as a Special Education teacher, because of Josh.  What a HUGE compliment that is to him and their friendship.  

Dominique, Jacob and Josh will be graduating TOGETHER in June!!  THIS IS INCLUSION AT ITS BEST and a beautiful example of The Road We’ve Shared!

THE middle school YEARS

Middle school was the easiest for us, as Josh moved to a life skills classroom and the pressure to perform academically finally ended with a great sigh of relief, in addition to having a special education teacher who “just got it”!!!!  She just understood all of his behaviors, what was connected or caused by the syndrome and what wasn’t.  These three years were extraordinarily relaxing for us as parents and I think even for Josh.  It was a much needed break from what felt like some sort of pressure (only in our minds, I’m sure) in an inclusive environment.  Josh could just be who Josh was with no expectations of him to be something he wasn’t.  Josh made many friends in this classroom and they would all travel together through middle school and up into high school.  A few of these friendships extended outside the boundaries of the classroom environment, but most are friendships made and maintained within the school setting.

We, AGAIN, fell in love with his teacher, Andrea.  She was devoted to her students beyond anything we had ever witnessed.  Although we only see Mrs. Gates occasionally at functions and we wish that we got to see her and talk to her more, we will never forget what she meant to us.  Here is a very specific story regarding Mrs. Gates:

She was a runner.  Every year, she would participate in the Jolly Jaunt 5K fundraiser for Special Olympics.  She would tell us every year, “I’m not running across that finish line without my kids!”  So, we would bring her students to her, wait 50 yards out in front of the finish line and, as she approached us, she would gather them up and run across the finish line TOGETHER with her kids!!  What a FABULOUS time we had on The Road We’ve Shared with Mrs. Gates!

THE High School YEARS

High school is really when Josh started to come out of his shell and actually “want” to be involved socially with other people.  Up until this point, he was absolutely perfectly content to stay home and be with just family or completely by himself.  I think his shell was a mode of protection for him.  His speech was very hard to understand and I think he knew that.  I can remember times when he would want to say something to someone, but would only talk to people he knew would understand him.  About this time was when we had to learn to STOP interpreting for him. 

High school has been nothing short of spectacular for the whole family!!  His teacher is Marie or as Josh calls her “SZENDA” (almost never puts Mrs. in front of her last name)!  How we have been so blessed to have all of these special people in Josh’s life, I will never know, but Mrs. Szenda again is just one of those teachers who just gets it.  She knows how to be tough but fair.  The kids absolutely adore her and I cannot blame them one bit.  Josh has made many friends in high school, old friends, new friends, friends without disabilities, and friends with disabilities.  THEY HAVE ALL WALKED WITH US ON “THE ROAD WE’VE SHARED“!!
There are so many social relationships that I could talk about, but there’s just not enough room for this post or the time in the day.  I am attaching a slideshow for all of you, since I believe a picture is worth 1,000 words! 

You will see Josh with mom, dad, Tim, Steph, Mem, Pop, Grammie, Uncle Mike, Aunty Meef, Bananas, Aunty Sher, Uncle Rick, Tyler, Amy, Marianne, Laura, friends Sam, Alex, Sebastian, Sophia, his Special Olympics bowling buddies, his challenger baseball teammates, his special friends, Patrick, Kevin, Naomi, Bobby, Nathan, Kimmey, Lena, Sam, and Joey, his neighbors, Erica, Greg, Nathalie and Jack, his teachers, Mrs. Oliver and Mrs. Pavoni, summer paras & bus drivers, his old principal, Mr. Burgess, mom and dad’s friends Bobby, Tim, Linda, Judy & Uncle Rich, his support counselor Kim, his dogs and even some members of the singing group, Celtic Thunder, who KNOW who he is when they see him! 

The list of relationships Josh has with people is ENDLESS and it is nearly impossible to name everyone, so I don’t know why I’m trying!!  If you want to see what Josh means to everyone his life touches, take a look at the Buddy Walk pictures…..THAT is what Josh means to everyone, people coming from near and far to just be with him!  

There is an
ABUNDANCE OF LOVE ON THE ROAD WE’VE SHARED
with so many amazingly wonderful people. 

Financial Goals & Independence

Picture

Payday last Friday (snow day) ~ Supervisor out on Monday ~ Brought paycheck home on Tuesday ~ Informed me he would “need to go to the bank on the weekend.”

This morning, first thing, Josh appeared in my office all dressed up, coat on.  I said “where are you going?”  He said “TO THE BANK!”  “Oh yes, sorry, I forgot!”   

There he is waiting his turn in line.  He is independent at the bank, reminds me to “stay here in line and wait your turn”, which of course being the obedient mother I am, I complied with his request. 

He goes to the next available teller who says to him “hi, how are you?”  Josh replies, “fine, you?”  The teller asks, “what can I do for you today?”  Josh says, as he places his check on the counter……”my check from Goodwill, twenty dollars, seventeen cents, all ones please” and he hands him his ID.  The teller takes the check and ID and Josh stands patiently waiting.  The teller hands him the coins and counts out 20 $1.00 bills and asks, “would you like an envelop?”  Josh replies, “SURE!” 

We leave the bank together and as we’re walking to the car I ask him if he likes getting a paycheck.  His feelings were written all over his face – the happy eyebrows, the smiling from ear to ear – and replies “OHHHHHHHHHHH YEAHHHHHHHHHHHHHH!!!!!!!!!” 

On our ride home, we had a lovely conversation about money, savings, plans, and goals.  It went something like this:

“Josh, are you ever going to put any of your money into a savings account and leave it at the bank?”

“NO!”

“Why?”

“It’s my money for working hard, gonna save it forever!”

“Well, I get a paycheck too, but I don’t get to keep all my money forever.  I have to spend it on things like food and heat and water and the cable.”

“Well, I’m going to save until I have THOUSANDS.”

 ”Once you have thousands, will you buy something?”

“Yeah, and I’m moving out!”

“Really?  Where are you going to go?”

“Not too far from you guys, down the street.”

“Are you going to use your money to buy a house?”

“No, you guys can buy it, I’ll live in it.”

Then he proceeds to explain to me that we’re going to take our money and go somewhere and that guy will say 248 and then I’ll say 249 and then he’ll say 250 and then I’ll say 251 and he’ll say he quits. 

I started laughing so hard when I realized he was describing a house auction.  Yes, he watches a TON of HGTV!! 

So there you go….Josh has a goal….he is going to save ALL HIS DOLLARS until he has THOUSANDS!  Thousands in $1.00 bills is going to eventually get hard to store in the bank’s little white envelops, but I am sure he will come up with a plan for that too!

What My Sibling Taught Me

In 2011, Josh’s older brother, Tim (my oldest son) and his long-time girlfriend, Steph, wanted to adopt/rescue a third dog from a shelter in Arkansas.  Not just any ol’ dog, but a deaf dog.  The owner of the shelter denied their request stating they were young, already had two dogs and probably wouldn’t be the best placement for a dog with special needs.   Tim wrote the owner of the shelter the following letter:  

Dr. Mike,

I want to start by saying I respectfully understand your reasoning on why you do not want us to adopt Frisbee and trust your professional opinion, but I am VERY determined to change your mind. As you may know my brother has special needs and because of that my family is very drawn towards other people and animals who have special needs. I look at my brother as a teacher.  He has taught me SO many good things I can’t even count on both hands and feet the ways he has improved my life.

With that being said I feel it would be no different with Frisbee…. Yes it will be A LOT of work, A. because she will be the third and you and I both know 3 makes a pack, B. because she has special needs and lastly, C. because she is a shelter dog which means she could very possibly have a traumatized past that she could potentially have a hard time getting over.  Now, on the contrary, I see some positive things in her that makes her have the potential to be a great dog! With the proper care and training I feel like together me and Frisbee can demolish some big boundaries set for special needs dogs and dogs of her “bully” breed in general!  Starting with the biggest factor, in my eyes anyway, she is still young which is a good starting point for training a stubborn but very smart staffy.  Secondly, I was reading an article on  deaf dogs the other day and it stated that a deaf dog has a hard time establishing that “pack” bond because they have trouble communicating with the other members of the pack.  It said in MOST cases a deaf dog will establish a better bond with there human than with the other dogs in the family, mainly because of the hand gestures and treats they will receive for understanding the hand gestures.  So I am very optimistic of that being the case in this situation.  Third, I am fully prepared for the enormous amount of patience and responsibility that is required to raise and train a special needs dog.  

With all that being said, I’ll finish up by saying I can personally promise you that you guys will not find a better home for her than with me and Stephanie.  Between the determination to prove people wrong about her “bully” breed and to break down those boundaries set for special needs dogs, and our love, respect, and appreciation for animals, I will guarantee this would benefit her as well as Stephanie and I!  I don’t by any means want to rush into anything, BUT I do really want you consider us.  It doesn’t matter to me how long the process will take, the answer no just doesn’t sit well with me as I fight for everything I believe in and NEVER give up on anything/anyone.  I would hate to see her go to a family based on the reason that she is cute and eventually get sent back because she is too much work…. I very much believe in the saying, “if there’s a will, there’s a way” and I definitely have the will and determination.  If you can take this into consideration and trust me as I have trusted you, I can guarantee a loving, caring, FOREVER home to Frisbee.

Thanks a lot Mike, for all your time!
Tim

Expecting Josh

Where to begin?

Josh was born in May of 1995, feels like five minutes ago in some respects and a lifetime ago in others.  How does this happen?  Where did the time
go?  How did we get here?  A blink of an eye!  Every good story has to provide a little background information!  This is where our story, what we like to call the rollercoaster of Down syndrome, begins~~~    
 
I was 28 years old, married for eight years with a five-year-old, typical son,
Tim, when Josh was born.  During the course of my pregnancy, we consented for some prenatal testing. Through a blood draw, the lab performed an Alpha-Fetoprotein test (AFP), which I had declined while carrying my first son because of its inaccuracy rate but, for some reason, while carrying Josh, we decided to have the test.  It came back negative for any abnormalities.  YAY!  I called everyone I could think of to tell them that the baby we would have on or around June 15, 1995, was going to be healthy! 
 
However, on the Friday of Memorial Weekend in May 1995, very much to our surprise, Joshua Michael arrived THREE FULL WEEKS EARLY, weighing in at 8 pounds, 1 ounce, with a cleft lip, Donald Trump sweep-over hairdo and Down syndrome!!  I knew he had Down syndrome the minute they placed him on my chest.  

You see, 10 years prior to Josh’s birth, my cousin, Janet moved to Massachusetts in order to get her son Early Intervention services.  His name was Paul, he was the love of my life (besides Tom who I was dating at the time) and he had Down syndrome.  Tom and I took that baby everywhere we went, zoos, baseball games, friends’ houses, even attended his early intervention classes.  He loved music and we learned how to sing all his favorite songs in sign language with the hopes that he would start to use signs to communicate his needs and wants to his family.  
 
One very sunny summer day, at my grandmother’s birthday party, when I was 18 or so years old, I had laid out a blanket in the yard, placed Pauly and all his toys on it.  We sat together singing and listening to his music.  I loved talking to him.  I was overcome with love for this little boy and leaned in close to him and whispered, “someday Pauly, I want a baby just like you.”  My mom overhead the comment and turned to me quickly saying, “Karen, don’t say things like that!”  We jump ahead 10 years and Josh arrives, a baby just like Pauly!  Hmmmm, who exactly was listening to my wishes that day, besides Pauly and my mom?   

So anyway, seems I may have digressed there I tad bit.  Josh arrives, we’re crying, the NICU doctor comes in, stands at the side of my bed and says “we think that your son may have Trisomy 21….Down syndrome, but we’re not positive.”  I looked at him and say, “you know you’re not wrong, I know you’re not wrong.”  He reassures me that they weren’t sure and would do a test using blood from the umbilical cord and have the results in a few weeks.  Tom and I mourned for 24 hours, each in our own way.  

Tom had actually arranged for a crew of friends to come to our house over the long Memorial Day weekend to help him replace our roof.  He called to tell everyone that the roof project was cancelled, once we knew the baby was, in fact, coming.  Once Josh was born and we found out he had Ds, I knew exactly what was best for Tom ~~~ go home and put a new roof on our home and that is exactly what he did the next morning!
 
I wanted one thing, for my entire family to be together.  I NEEDED TIM!  I kept crying and telling Tom to have my parents get Tim to the hospital.  I had spent the last five years of my life with Tim as my only child and he was my best friend.  We did everything together, including (all of a sudden at the beginning of my pregnancy) going back to church, attending mass every week, just he and I, sitting in the same pew, saying the same exact prayer:  “Please God, let our new baby have 10 fingers, 10 toes, and a healthy brain.” Week after week after week, that is what Tim and I did every single Sunday.  Why, all of a sudden during my pregnancy, did I find the need to be back in my church?
 
My mom and dad arrived at the hospital with Tim in tow.  I placed Joshua up on my shoulder facing away from Tim as he scurried to the side of my bed.  I wasn’t hiding his Down syndrome, but I was hiding his cleft lip.  I said, “Tim, you know how we’ve been going to church and saying our prayers every week?”  He eagerly, replied “YUP!”  I continued, “well, our new baby has 10 fingers and 10 toes, but we don’t know how healthy his brain is going to be, because he has Down syndrome.”  Tim’s response was immediate and emphatic, “I don’t care, he is my baby brother, CAN I HOLD HIM NOW?” At that moment, I knew this was the first step in our healing and letting go of what we thought our life was going to be, allowing a change in our perception of how things were going to be and knowing that things were going to be okay!

A few hours went by and a nurse appeared in our room, telling us it was time to “try to feed him.”  She continued, “babies with Down syndrome usually have a hard time sucking, so I’m going to go get you a special nipple to try.”  Ummmm, what?  What, hang on…..I thought to myself “we’re already treating him differently?  We’re already making an assumption that he can’t do something?”  Then I finally got the words out of my mouth – “Let’s try a ‘regular’ nipple first and if he can’t do it, then we can switch to the ‘special’ nipple!”  She thought that was a fine idea and my instinct to advocate for him was born, the second sign that EVERYTHING WAS GOING TO BE JUST FINE

I won’t lie, there have been many ups and many downs ~ just like a rollercoaster ride.  BUT for anyone who has taken a ride on a rollercoaster, at the end of it, the adrenaline is pumping, you’re smiling, laughing, you can’t stop talking about it, maybe a bit sick to your stomach but, for the most part, IT WAS A VERY EXCITING RIDE!!