About Me

I am a single mom of three amazing boys!  All three of my sons entered my family through adoption.  All three of my boys have developmental disabilities. My oldest son, Matthew has been diagnosed with Fetal Alcohol Syndrome and Bipolar Disorder. David, my middle son, has a genetic condition, he has a duplication on his 15th chromosome which leads to autism like symptoms, seizures and learning challenges. My youngest son, Jacob has learning disabilities. Each of my children bring unique challengs to our family and also bring their own personality and joys to our everyday life!

Monday, December 14, 2015

Therapy....never thought I would like it

So basically, all is calm on the Western Front, so I figured it was time to finally work on me.  As you can imagine, with 3 kids, even typical kids, life can be pretty insane, and so it has been quite a long time since I have had an opportunity to work on myself. Thankfully I have some pretty amazing friends, who have been great about reminding me of the important rule that is clarified every time you fly somewhere.... you can't take care of others, unless you care for yourself first, so ALWAYS put on your own oxygen mask before helping someone else put on theirs!

Apparently, it is time for me to put on my oxygen mask!  I have started seeing a therapist once a week and so far I am 3 weeks in and I am loving it!  The best part by far is that I don't leave there wanting to kill myself.  You see the only therapy I have ever done in the past has essentially been the kind where you walk in feeling great and you leave after talking about how shitty life is and you basically feel like it is time to drop dead.

This therapist is amazing at helping me see what I am already doing well, recognize what I can change and then making a plan for how to implement the change.  The best part is that after my first hour of therapy I already started implementing awesome changes, AND I have lived to tell the tale!

I have always been a pretty reactionary person.....if you upset me, I have been quick to either cry or to send you a strongly worded email.  When I cried, people often felt I was angry and so I rarely got the help I needed, and well, the strongly worded emails often were also not seen as a cry for help but rather they were interpreted as a big "f" u.

I am working hard at breathing through my intense reactions to events and I have realized that I have about a 30 minute upset time and that once I get through that really intense upset time I am able to either:
1.  see life more clearly and respond appropriately
2.  move on to something else and realize it really wasn't a big deal in the first place
3.  address whoever I had the concern with and respond appropriately

What I have realized is that all I have to do is get through the first 30 minutes.  As long as I don't let myself anywhere near a computer, I am doing pretty ok with that.  No nasty emails have been sent, and I am more clearly able to problem solve.  I have realized that while the first part of those 30 minutes can be really intense for me and include some really strong emotions, after that things get better.

I am learning that I can do anything and deal with any situation if it is just hard for 30 minutes and that is a very powerful thing to learn!  Now I only wish I had learned this a while ago, because boy would life have been easier!

I am also learning in therapy that it is totally ok for me to recognize that the life I am living is not easy.  I have often felt that since I chose to adopt 3 kids on my own that I have no right to complain about our challenges.  As I hear people complain about the daily ins and outs of parenting, it has been a struggle for me to know how to relate to that.

As a rule most moms and caretakers complain at some time or another about "having to make dinner" or "having to grocery shop with the kids" or "having to do homework", but because I adopted my boys as a single mom these are just a natural part of the life I really wanted, so it seems odd to complain about them.  However, as I am out at the grocery store with my 3 kiddos, and I bump into friends who are shopping alone, I often wonder how that must be.....in many ways I am sure it is really quiet, and I think I would miss some of the noise of my boys, but it also must be kind of blissful to be able to just be lost in your thoughts as you pick out your groceries and not have to explain again why we are simply NOT BUYING OREOS....(strange how those words are capitalized, huh!)

I am working hard to recognize that while I don't need to start "complaining" about the challenges in life, it is ok to breathe and acknowledge that something is a challenge and then be aware of my successes.  It is not easy to work until 5:30, get home at 6:00, feed the kids dinner, clean up from dinner, check homework, ensure everyone has a bath or a shower, read books and keep track of all of the school reports.  It is not easy to be the only set of ears that hears everything the boys want/need to share.  It is not easy to juggle it all.

It is ok if not everyone gets as many showers in a week as they are supposed to.  It is ok if I don't remember to initial everyone's homework.  It is ok if we don't get all of the reading done.  It is all ok, and from what I am hearing, it is even ok to say that these things are hard and to acknowledge that no one loves doing it all.....apparently nothing bad happens when you say that!

I think I may kind of like this therapy thing.....one hour a week, or in reality a therapists hour which is really only 50 minutes, but hey...that's ok too!  It's 50 minutes all about me....for me!  Kind of like a weekly present!  And THAT I'm learning is MORE than ok!

Thursday, October 29, 2015

David's questions

What I love about David is that he can do and say things that would make me lose my ever lasting mind if any other human on the planet did them, and then just as I am about to lose it he brings me back from insanity to a place of calm.

I run a preschool so one might  think that I am a pretty calm person who interacts like freaking Mr Rogers with my kids, but if you heard the story from David you would think that I am a constant raging lunatic.....what he forgets is that he doesn't tell the whole story. ( ok, in truth likely neither do I, but hey, my blog, my version).

David could bring the calmest person to their knees in t minus 10 seconds if he was having a David moment.  He has pushed full dressers down the stairs when he was upset with a babysitter.  He has ripped up countless numbers of library books faster than you can possibly get the book away from him, and he has dumped countless boxes of cereal on the table for no other reason than because he can.  However, in these crazy making instances, I am often insanely calm....sure, I make him clean things up, and I let him know that the behavior is not ok, but he often looks so tiny in these moments that for me to react any way other than calm would be totally wrong, so the crazier his behavior the calmer I stay.

On the other hand,  he has moments, like today when I was ready to leave the house and just needed him to pack a snack and he was on freeze mode when he frustrates me and then makes me laugh like no other human.

He needed a snack, and so I offered him cheez its or pretzels, both reasonable choices.  He wanted only a granola bar, not a bar with nuts, but a bar made in a factory where there may have been nuts at some point, and so he could not bring that granola bar.

This is where it is impossible to understand David's brain- he wanted the granola bar, but he knew he could not have the granola bar, but he also could not pick between cheez its or pretzels.  I packed him cheez its because we had to leave, he threw them on the counter.  I offered pretzels, he kept repeating bar, bar, bar, bar, bar.  Finally I said, fine take the bar, I will tell your teacher that you have it and need to eat it outside of the classroom, and he picked up the box and read to me where it says "made in a factory with nuts", and so he would not take the bar since he knows he cannot have products with nuts in his classroom.

As I once again told him that he could pick cheez its or pretzels, maybe slightly more firmly this time, he started to ask me his favorite question:

"Does Uncle Ryan yell?"
"Does Meg yell?
"Does papa yell?

And as we go through all of these and more as I become increasingly more frustrated because guess what WE ALL YELL!!!! But now he is on his yelling kick so he has to go through everyone we know to see if they yell and because he forgets who he already asked about we cycle through Uncle Ryan and Meg and Tim at least a million times!  Then as I tell him for one final time, "we all yell, now cheez its or pretzels?" He says "bar", smiles at me and takes the cheez its!

It's as if he knows he is being funny and in some ways he is pulling my leg, but in other ways he is bringing me to the very brink of insanity and then pulling me back from the ledge as only David can with a twinkle in his eye and a smile on his face.......

Sunday, August 2, 2015

Summer time and the living is .........well, not easy, but fun!

It is very odd when you have spent years of your life worrying about something, to suddenly alter or turn off that worry, but that is exactly what I am trying to do.  After worrying about Matthew so intensely since things went so badly when he was in 3rd grade, I am suddenly enjoying the fruits of my labor.

It is awesome to watch him become the big brother he always wanted to be.

  • He is giving Jacob piggy back rides.
  • He is going for bike rides with Jacob and David and loving it
  • There is laughter in my house
  • Today Jacob announced to his friends that Matthew is HIS big brother, and insisted on going on a go cart ride with Matthew rather than with me!
  • Yesterday David was upset and Matthew talked to David to help him calm down. This has always been something Jacob and I have done, but Matthew did it masterfully while I drove and Jacob chatted with his friend.
I am able to now see a future Matthew who has good things ahead of him.....there is still plenty to be worried about but my worries are now about how to ensure that he has the most opportunities to succeed and gain independence.

I am suddenly looking into the real possibility of him having a job, but needing a coach who can help him interact appropriately in the workplace- this is a HUGE sign of success!

I can foresee a time in the future when he will need a cell phone because he will not always be with me!  That is an awesome sign of growth on his part.  

He is showing so many signs of maturity and growth.  Tonight alone we all sat down for dinner and he was in the basement and was taking forever.  When I asked what he was doing, he told me he was doing the laundry- this is a mom's dream come true!

Then, I went out for a run, and left him to finish eating and came home to him running the dishwasher- AND this time he remembered the soap!

I am hoping beyond hope that we have come through the darkest times, but the best part is that I now know that should life get dark again, I can count on the sunshine coming back with a lot of hardwork from both of us! 

Sunday, July 19, 2015

When I write, why I write, how I write

I think it is important that people understand my writing process, so that when you read my blog you don't think I am in the midst of a potential emotional crisis.

Typically by the time I am at the point of writing things down I am either over the current crisis or I am out of the midst of the crisis and writing is my way of processing.  This doesn't mean that I never write when I am in the middle of a crisis, but I do try to write when I am not in the middle of the emotional moment so that I don't write things I will regret later.

Typically an issue or incident occurs, then I survive it, then I process it and then I write about it.  So by the time you read it, the incident is over and there is an ending to what I have written about.  I appreciate the comments of support more than you can ever know.  It means the world to me to know that people are in our corner and that I have a community who understand the crazy we live in.  I just don't want people worrying unnecessarily and felt it was important to let you all in on my writing process.

I have given a lot of thought recently to making my blog private or making people sign in before they read my blog, but over the years I have had people reach out and say they are living through a similar life that I never would have guessed would benefit from my blog.  For that reason I don't want to make it private because that would create a stumbling block for sharing our story.

 People have reached out who have family members who share David's genetic duplication, and people have reached out who have children who struggle with mental health issues and fetal alcohol syndrome.  For this reason I am keeping my blog public but I do have concern that it is upsetting people recently and I am trying to be very sensitive to this as my goal is not to upset my children's teachers, or therapists or my family members or friends.  This is me writing about our story from my perspective.  At times my perspective and understanding of life is wrong or one sided, but also I am juggling a full plate, and so often I am dealing with multiple issues at the same time.

I am working on getting some help for myself because I realize I am currently juggling too much and feeling overwhelmed.  The biggest message I want to share with you all is that I am ok- I am stressed and at times overwhelmed, but for the most part I am ok.  Between raising these 3 boys, juggling school needs for them, and juggling a new self direction program for them that is supposed to make respite easier, but has truly just added a lot of work to my already full plate, there are tons of ups and downs.  However, the ups are higher because i have often waited a long time for them, but that often means the downs are lower than average, but we will get through them.

Last week I read through my blog and realized what dark times we have come through.  By comparison, we are doing so well.  And for that I am forever thankful.

Saturday, July 11, 2015

Truth of being a special ed mom times 3

First and foremost, if you are easily offended or think this might upset you.....just stop.....you don't have to read it.

Second, if you recognize yourself or someone else in any of what I have to say......stop....realize I could live and cope with any one or 5 of these things, but all together it is too much......so if I seem too sensitive, it is because all together, for me, alone, this is too much.  If that makes me appear weak, I'm sorry.  If I am too sensitive to the perfect facebook world, I know that already, but it doesn't make the pain that it causes any less real.

Third, know that I had stopped writing because my writing was upsetting people.  Know that since I stopped writing, I am living feeling like I am going to implode, so if I don't write I can't cope.  Do I have to publicize my writing, no.  If I don't publicize my writing though, no one will know some of the hell that this is.  No one can understand because when you ask "how are you?' I answer "good" or give you a brief hint of what is going on.  When I start to really tell you, because I think you might really have time to listen, often your eyes blank over and I assume it is too much, so I stop.

 I am not trying to write to offend, but I am writing my feelings, as I feel them, as life is impacting me given all that is on my shoulders. This is not a "cry for help" or a woe is me post, but it is a "this is what it takes to be a single mom to 3 kids with special needs post, from the trenches".

Life since June
1.  I planned on giving Matthew the summer off from school- sometimes a kid just needs a break, and I felt like he was in a good spot for a fun summer.  I am the granddaughter of a camp director, I am the niece of  2 camp directors, I was a camp director...I believe strongly in the power of camp.  I wanted my kids to have the experience of camp.  I worked hard to plan for the "perfect summer" for Matthew.  I spoke to the staff at both camps he was to attend.  I prepped them for who he is, what he needs and we discussed how it would work.

I got a phone call from the district that I needed to make a firm decision- if he attended summer school they needed to hire a bus attendant and if he didn't, they wouldn't.  That made total sense to me, so I bit the bullet and with a pit in my stomach, I decided no summer school.

Day one of camp #1- i was met with concerns and it became apparent that this may not work.  I quickly shot off an email to the district begging for a summer school option and researched other camp options for Matthew.  The camp was not saying "no" after one day, but I didn't have time to wait a few weeks to make a decision, I needed feedback quickly and to decide so I could create Plan B.

The District was AMAZING!  They were quickly responsive and offered us a summer school program.  I was beyond thankful, because I had chosen to say "no" to summer services and while it would have been hard, they could have said there was no way to add summer school for him.

I contacted another local summer camp and worked with the administration to find an option for matthew for this week- he did Blacksmithing Camp and LOVED it!  it was truly incredible.  My boy made a metal spoon, fork and hook and it was amazing!

Matthew finished off week 1 at the first camp, and with tears in my eyes and a heavy heart I explained to him that he would not be returning. I explained that he did nothing wrong and I held him as he cried.  It was painful to hear the "why do I have special needs", "why doesn't friend X have special needs", "what did  I do wrong".  In reality I had no answers......The camp is about "hang time" and "loose structure" and Matthew needs structure, he needs routine.  I wish this was something that could have been created for him, but the camp director in me knows that you can't make a camp program for one kid.....however the mom in me really wishes we could.

2.  I attended a wonderful CSE meeting where there was laughter and happiness as we officially approved a summer program for Matthew, and we solidified his school year program.  I was told the make up of the class, and we were set to go forward.  I thanked everyone, and left happy.  I was sad that he was heading back to summer school, because I wanted him to go to camp, but happy that the school, the district and I had worked well together and I felt supported.

Then a day later the shoe dropped- the class make up was not what was expected.  The age range was larger.  I panicked.  I know that this was not done on purpose, and I know that everyone has Matthew's best interest at heart.  I do not question this- this alone is huge growth.

However, as Matthew's mommy, I am scared.  I don't want him with kids who are much older.  I want him to maintain his innocence longer.  I want him to be 14 while he is 14, not try to keep up with older kids.  The hardest part is that I am internally often so torn inside.  I know my boy needs summer school.  I get that.  I agree with that.  However, I pictured him outside playing, swimming, laughing at camp.  Then I swallowed hard and changed the picture, and now I am being asked to change it again and include summer school with much older kids.

I am putting my trust in his school.  I am putting my trust in our District, I am doing this more easily than I have in a long time, my head knows this is the right choice, but I can't get my heart to stop screaming "LET HIM GO TO CAMP!"  This is the internal struggle.  This is no one else's fault and yet the screaming won't stop.

3.  His Blacksmith program had an open house which we went to on Thursday night.  I was there with my heart in my throat the whole time and tears in my eyes.  My son, the one who years ago was playing with fire and scared me to death, was working with metal and fire to create pieces of true beauty.  He did it with respect and amazingness.  His teacher loved him, and tutored him through the entire process.  He was out in the woods, in a blacksmith shop and he was just a regular 14 year old boy.
This is what he is leaving to go back to school.  Nature, camp, woods, adults teaching him new skills.  If only this was offered full day, he could go there, but it is only offered until 12:00.  If only I didn't have to work, he could go there, but I have to work.  If only......if only.....if only.

Do you see why I am crying?  Do you see why this is so hard.  He was typical.....I got a glimpse of my boy, in a typical setting, being typical. He learned a new skill.  He succeeded.  If only..........

4.  David's seizures are back......I have watched him now have 6 seizures.  I have watched him struggle.  He takes 4 anti seizure medications, and yet the seizures are back because he is going through puberty.  he is back with that cough/vomit thing he does at night, so every cough all night long I panic.  He is back with the behavioral stuff that comes before a seizure, so every behavior has me worried.
He was a mess at school the other day, and I have no idea why.  My best guess is he had a seizure at some point, but I wasn't there, so I don't know.  All I know is he was behavioral, and then it stopped and I wasn't there.
Do you know how hard it is to be at work while your son is struggling?  Focus on work, get it all done....it is all too much.  I am in my office crying, and then wiping away the tears because I am at work.  Work is my escape, my sanity and I love it....but it is hard to be at work when my boys need me.

5.  We are working on a new program called Self Directed Services through OPWDD which is supposed to mean that I work with a broker to hire staff who can support the boys in the community gaining new skills.  The broker is supposed to help me find staff and access therapies for the boys in the community.  So far the broker has done nothing.  She cannot seem to write an advertisement that seeks staff that is not full of typos and errors.  She cannot seem to correctly manage payroll for the staff that I had already hired.  it is error after error and I am monitoring everything.  Instead of this being easier, it is consistently harder.
I am juggling this program for Matthew and David, and alone this could be a full time job.  The support that I am supposed to have in the way of a broker needs constant monitoring.......I am not the only family struggling with this, but likely I am the only family juggling this for 2 kids as a single parent, and it is hard and exhausting.  The agency and broker keep apologizing for the errors but I just need the errors to stop so that I can have help.
Hiring any new staff person to work with the boys takes 8 weeks- do you know anyone who wants to wait 8 weeks to start a new job?  A part time job?  Most people want to start immediately. Then for each person I have tried to hire, the hiring process with this agency has been a mess, so I am juggling the hiring of a new person who just wants to work, and until they can get through the hiring process they can't start working ........exhaustion!

6.  We have hit the point that the boys are emotionally and developmentally all younger than my friends kids.  My friends kids have moved on.  They are beyond where we are.  I knew it would happen, but I wasn't prepared for the pain.  We are making new relationships, new friendships.
My kids are playing best with kindergarteners/1st graders- developmentally that is where we are.  It is just hard to see people moving on, and to be standing still.
I have a 14, 11 and 8 year old and yet I can't leave the house without a babysitter.  Most 14 year olds are starting to babysit, and yet mine still needs a babysitter.  I am not sure I will ever adjust to that, it is just hard..

7.  When people are with us, they are asking for a break, some down time from the chaos, a break from the crazy.  Trust me!  I hear you!  I would LOVE a break.  Some down time, some quiet.  The difference is, you can leave,  I can't.
I will never adjust to the noise, the constant chatter, the chaos.  If I could create discipline to make it stop, know that I would.  If you have suggestions, i am happy to listen.  However, in reality, before meds kick in and after they wear off, we are left with chaos and crazy.  In the middle of the day, I can hope for a little more control but even then it is iffy at best.

8.  Even Jacob is really struggling.  He is a child who is labeled as emotionally immature due to ADHD and globabl developmental delays.  The other day we talked about relaxing on the weekend.  He didn't know what a weekend was.  He is 8.5 years old.
Did you actually sit down and teach your child what "weekend" means? There are so many thing he needs to be taught, that other kids just pick up on.  So much that I don't know where to start.  When I realize he has a gap, I fill it in, but i assumed he knew "weekend".

9.  I made a decision to send Jacob to summer camp most weeks and summer school only 3 weeks.  He is a kid who thrives on learning about animals and science.  I needed him to have these hands on learning opportunities.  Also, summer school for him is only Tuesday, Wednesday and Thursday 8:30-11:30.  I work Tuesday-Friday full time over the summer. I can't leave at 11:30 to pick him up, it isn't realistic.  I have no child care who can be here for him 3 days per week at 11:30, and even if I did where would he go Monday and Friday.
Given all of these pieces to the puzzle, I made the best choice I could.  However, I am watching him slip backwards without school.  His speech is becoming harder to understand, his math abilities are slipping.  Yes, I know....tutor him......have you tried to teach a child skills at 5:30 on a beautiful summer night when all of the neighborhood kids are outside or he wants to go to the pool?  I am working on it, but you know what?  I want him to play....he is only a kid once!  And yet again, watching him struggle breaks my heart....why can't it all just come easy?

10.  I am tired.  I feel like I am collapsing under the weight of all that is on my shoulders.  I am dealing with my own chronic illnesses that rear their ugly heads when I am on overload.  I am running as often as I can so that I can destress and feel relief, but as I run around the block I am worrying that my boys are struggling and so I am worrying as I run.

I know that these bumps will get better- things will improve with time.  But as a mom to kids with special needs,  am also learning that there is an underlying feeling of "this isnt what I planned".  My visions of parenthood didn't include life long care for my kids who are not developing independent living skills.  My vision didn't include self contained classrooms with ratios of 1:1 care.  I realized the other day that I have children who require 1 adult to 1-2 kids at school, and I am parenting 3 of them alone.  It is a lot to juggle.

And yet, when we are out in a kayak, or on the beach creating sand castles, I love every minute of our life!  I get to keep my boys little while yours are growing up.  I get boys with such innocence while yours are becoming teenagers....so there are gifts to this life, but there is also pain, and I guess right now the pain feels more raw than normal.
This is the life of a mom to 3 kids with special needs.  This is life raw......this is our world that is not posted or talked about on facebook.

Saturday, May 16, 2015

Special Olympics All Grown Up

I have been struggling a lot recently with panic and anxiety.  It is not something I think people think of when they see me, and I work hard to cover it, but recently it has taken over a little.  Upon walking into Matthew's school for a meeting, I could hardly breathe, it was a response I was totally shocked by.  I basically had to focus on breathing and holding back tears most of the meeting, not something that is typical for me at all.

On Wednesday I found out that Matthew had a Special Olympics Statewide Basketball Tournament that started at 8:30 Saturday morning, and all I could think of was, "I can't possibly do this.  I don't want to, you can't make me."  As I was talking to the coach, I talked of all of the struggles;
* It's 30 minutes from home- some teams were driving 5 hours
* It's too early in the morning- really?  Because Matthew will be up.
* It's too long a day for the other two boys- have his respite worker bring him

Essentially, there was no good enough excuse to avoid me going to this tournament.  I had to face my fears, put my big girl panties on, and go and see what this Special Olympics Tournament was all about.

I was afraid, true deep pit of my stomach fear.  Matthew is a great athlete and loves basketball.  He can shoot a 3 point shot with amazing accuracy when he is just shooting hoops at home.  However, he can't play with a team of typical peers because once the action of the game starts he can't focus and follow the ball.  His basketball team is made up of mostly players in the age range of 25-40, and their reality is a little too real for me.  They are all men who struggle with their own disabilities, both emotional, and developmental.

It is this reality that had me wanting to avoid the tournament.  I try hard to live life in the moment, dealing with Matthew at the age of 13.  I have no idea what will happen between now and when he is 21, and thinking about it is too much for me, so I live in the moment.  However, being surrounded by his teammates, I have to face his future.
* there are men on his team who are married.
* there are men on his team who live in group homes
* there are men on his team who are dependent on non family members for their care
 These men are very happy, but to me it is a lot of reality, and not the reality most of us dream of.  It is not the white picket fence, 2.2 children, happily ever after.  However, it is their happily ever after!

They are a true team who enjoy their time together. They have friendships.  They have camaraderie, and they have an intense love of basketball!

On the other side,  most can't do so many of the independent tasks of living as an adult.  They can't balance their checkbook.  They can't manage their finances.  They can't drive.

They are reliant on agencies and staff to do most of the things that adults do independently.  While some of these agencies are made up of awesome individuals, and some staff are incredible, there is still a reality that a paid person is responsible for helping these guys with so many things that we all take for granted.

For me this tournament was like facing Matthew and David's future realities all at once. I couldn't picture what this tournament would look like.  How would these guys cope in a big tournament?  How would Matthew cope?  What would it look like.

I decided that I could not let my fear keep me from going to this tournament, so I had to hold myself accountable.  I did that by posting my fears on Facebook so that my friends would ensure that I took Matthew and faced my anxiety head on.  I made a plan for Matthew's respite worker to come at 7:45 to pick Matthew up, so that I could go a little slower with the little boys, and so that she would be there to support Matthew while I helped the little boys.  She is an awesome cheer leader for Matthew and a great support for me!

Peggy, Matthew's respite worker, kept in touch with me by phone to keep me posted on the day's events.  At 10:30 Matthew's games had still not started, there was no definite start time on the horizon, but I was actually finding myself needing to be there with my son.  My anxiety turned into excitement, and I was ready to go see my boy and just focus on his playing basketball.

We arrived at the tournament just as Matthew's team took to the court for their first game and it was awesome to see them play.  They struggled a little with finding their footing as a team, and barely scored at all in their first 2 games.  However, the more they played together, the better they played.

In the end, I found myself becoming the cheerleading mom that I dreamed of being as I cheered my boy on as he played 4 basketball games.  He had some awesome shots, he had amazing team spirit and he made me super proud!

At the end of the day when I asked if he wanted to play again next year he said he wasn't sure because there was too much swearing and too much roughness!  My basketball giant, playing with the men, but still a boy at heart!

Sunday, March 29, 2015

thoughts on schooling with multiple children with special needs

It is IEP time again, and no matter how much I gear myself up for this time each year, there are always new surprises and new stresses.  here are the things that I am working on currently for each child.....what shocks me is how many times what I am working on for one child is in direct contrast to what I need to fight for when trying to help another one of my boys.....if that's not enough to make your head spin, well, you are a better person than I am.

1.  Recently was in the room while a child was restrained.  This is against the regulations for restraining a child, which state it must be done away from other children.  The child was restrained in front of the classroom door, so no other kids could leave.  I was not told of the restraint by anyone but Matthew.  Given this, and so many other issues this year, the Director of Special Education, an advocate for Matthew, and a psychologist hired by the school district all went for visits last week.  Each went at different times.  Each saw a quiet, well run school environment.  The only issue that was raised was that Matthew is physically locked INTO his classroom.

One change that occurred in response to my upset about not hearing of the restraint happening in front of Matthew, is that I now get a daily email....in last week's emails alone I was told of:
1. 3 classroom crisis which involved support crisis workers being called in.  These were crisis of other children, but the  chaos affects matthew.
2.  1 child going AWOL- leaving the classroom without permission
3.  1 outburst from Matthew.

How 3 professionals went for a visit and all was calm, I wish I knew, when these things occurred in the same week of their visits.  While i trust that they saw the school, and appreciate that the classroom Matthew is in, is a decent classroom, I am always going to be sad that he deals with these chaotic experiences, and i will never know the impact they have on him.

That said, the increased communication is helping and having advocates who support that the communication is a MUST feels like  a giant step in the right direction.

2.  I really want Matthew in a typical school environment.  That said, I understand he is simply not ready for it, and the typical school is likely not ready for him, so it will not necessarily make sense.  However, I was told by the Director of Special Education that the single best environment for students is in district programming, when we talked about David, and I can't get this statement out of my head just because I am dealing with Matthew.
She was clear when she said that the best programming is in district, that this did not mean Bethlehem specifically, but that in district in most school districts is far superior to out of district programming.

3.  I really feel like Matthew is a child who would thrive with the extracurricular programs that school districts offer children.
* He would thrive in band
* he would excel in a sports program- even a freshman team or modified would be awesome
* home economics, shop, etc....would all be awesome for him
* If he can't have access to these mainstream programs, how about pet therapy? music therapy?  art therapy?

1.  It is being recommended that David stay in 5th grade next year.  I like this because it gives him another year in this amazing environment.  However, in talking with the psychologist mentioned above in regards to Matthew repeating 8th grade, I was told that retention is never a good idea for children with special needs.
I am 1 mom, parenting 3 children with special needs. How is it that these rules are black and white and yet I cannot apply them to my 3 children?

2.  David is connected with the current mainstream 5th graders at his Elementary school, they really look out for him.  These kids will go on to 6th grade in the Fall.  How will David do without them.  Not that they are peers to him, but rather they are kids who treat him with such love and kindness and caring, and it is a nice group of boys......what if he doesn't get that type of group next year?
3.  The Psychologist and other parents of middle schoolers have been saying that our mainstream programs are not ready for children with special needs, that there is often inappropriate responses to
"discipline" issues, and especially for David where his "behavior" is so closely connected to his seizures, it is a challenge to trust that by holding him in 5th grade, that the middle school will really be ready for him next year.  Can't I just keep him in this class until he is 21?
4.  Yes, I know that in item 2 I started off asking if he should stay in 5th grade again, and now I am saying he should stay there until he is 21......do you see why I am so confused???????

1.  Jacob is in a cotaught class this year- and has really needed the support but thrives with the support.  Given that he thrives with this support, he is on the cusp of losing the support....I hate that a child has to fail to get help that they need.
2.  Jacob doesnt love leaving the classroom, so it is being recommended that he have fewer outside of class services...again, while he may not love it, in 3rd grade he can still leave class and it is not as big a crisis as missing class time in the higher grades, so if he needs OT and Speech...in my world better now than later.
3.  Jacob is getting speech 4 times a week next year, but is not being referred for summer speech....that seems assanine to me....the child struggles to say many multiple syllable words clearly, which is super cute, but not when he is 20......10 weeks without speech over the summer seems like asking for trouble....do I really have to be the parent that fights for this?  Can't the speech therapist see why this is a problem?  So for now, i am keeping a log of all of the words he can't say, because THAT has made for a fun weekend!

Really, the speech therapist can't keep a log?  She is working on "drilling him".  In 1 word situations, he can say most things, however most of us speak in more than 1 word utterances.....maybe the SPEECH therapist could have a conversation with him and gather data?  I gave her the example that he calls it a "mote control" instead of a "remote control" because that isn't a "school word" she says she wouldn't have known that.  Ummmmmm talk to him for a few minutes......this is not the only word he leaves off the first syllable of......cute? yes.,.,,,,,,functional? Maybe not so much!

Wednesday, February 4, 2015

Special Education Programs

I am in a very unique position to have 2 children, Matthew and David, with similar, yet different profiles, who are 3 years apart, and yet who are having insanely different school experiences.  While those who meet Matthew and David typically would see them as very different;

Matthew- loud, outgoing, excited, personable
David- calm, quiet, introverted

based on their special education profiles, both boys are somewhat similar.  
  • Both boys are able to read most written words, yet comprehend very little.
  • Both boys have worked on basic math skills, but have only limited understanding of coin value, passage of time, or anything beyond addition.
  • Both boys possess the ability to share their thoughts and feelings, but both only do so on a very limited basis and not often with social awareness
Luckily, for David, he is 3 years behind Matthew in school, and for him it appears that our District is beginning to create some incredible programs.  David this year went from a self contained Skills class, to a self contained Intensive Skills class and I could not be happier.  What this has meant in layman's terms is that David has been able to go back and work on the things that he had not yet mastered.  For example, David does not have an understanding of 1:1 correspondence, a basic skill needed in order to learn other mathematical concepts.  However, in the Skills class last year, David was introduced to subtraction, and even multiplication because it was "part of the curriculum".  This year, all of David's skills are taught at his level, and so he is being given the time to master the concepts he has not yet mastered, and his education is being altered to specifically meet his needs.

At David's conference yesterday, David's teacher shared that the Intensive Skills program is being expanded through the Middle School and into the High School in upcoming years.  This will mean that the educational track that David is on, will allow him to complete his education on a similar path.  Sure, if he makes huge growth, there is room for him to reenter a Skills classroom environment, but if he stays on the path he is currently on, he will have a supportive, developmentally appropriate environment which will serve him until he is 21.

By contrast, Matthew, who is only 3 years ahead of David, has been unable to have his needs met adequately through our district.  It seems strange that the population of students is so different in 3 short years, but that is what I am being told.  In Matthew's age group, the Intensive Skills classroom is made up of children who are non verbal- for a child who likes to communicate verbally, which Matthew does, this makes the class a poor match.  In David's Intensive Skills Class every child is verbal to some extent.  

I have asked the District to please help me evaluate other program options for Matthew, but I feel like I am in a real life version of The Three Bears:
  • This school is too academic.  This school is not academic enough.  We can't seem to find one that is Just Right.
  • Matthew is too behaviorially needy for this school.  Matthew is not behaviorally needy enough for that school.  We can't seem to find one that is Just Right.
  • The children in this school all have mental health issues, but not developmental.  The children in that school all have developmental issues, but not mental health issues.  We can't seem to find one that is Just Right.

It is strange to sit in a conference, as I did for David yesterday, and gush about what a perfect educational environment it was.  David is talking more, sharing his thoughts, understood by his entire staff, and learning!  There are strategies in place for the days when David is struggling, and there is recognition by a team of adults that David struggles at times and we are unsure why. 

It is heartbreaking to know that Matthew deserves and is owed the same high quality experience but I can't find it for him.  Just a year ago, this class seemed out of reach for David, and yet I fought and I begged and I pleaded and he was observed and finally we all agreed it was a great classroom for David- and it is!  The same type of experience has to exist for Matthew, but I can't find it.  I have googled, I have asked, I have done what I know how to do, and yet I am coming up empty.  It is disheartening to know that I only get 1 shot to get this right.  My boy is going into 9th grade, and he needs a rich, safe, warm learning environment that is led by a team of adults who understand children with permanent brain damage due to fetal alcohol syndrome.  

Sunday, January 25, 2015

David turns 11

David just turned 11.  He is an amazing, sweet, loving little boy, but he is far from what most kids are like at the age of 11.  David is an 11 year old who is still not toilet trained.  He is entering puberty, and yet developmentally in most ways he is still cognitively, emotionally and developmentally a 4 or 5 year old.

David is working on basic concepts like 1:1 correspondence- he still struggles with counting items past 7.  
David is able to read, but not often able to tell you what he read without prompting.
David is able to know enough  to be aware that he needs to use the toilet, but either not able to recognize the need to go, or not aware of when he is going.  Instead of asking for help however, something many 2 and 3 year olds will do, David has recently started hiding his pullups that have poop or hiding his soiled underwear.  We talk about the reasons this is not a good idea.  I implore David that when he has an accident I am not mad, I just want to help him clean up, and yet this weekend I have found 3 pairs of soiled underwear or dirty pullups in David's bedroom.

I know in many ways it is hard for parents when their children have a disability that is visible.  That said, I often wonder how life would be different if David and Matthew looked more disabled.  It took me until Wednesday night to shop for David''s birthday presents, not because I wasn't excited for his birthday, but because his list hasn't changed in 7 years.   For David's birthday, we bought him a train set and a 1000 piece puzzle.  We bought him Mickey Mouse Duct tape, Sponge Bob duct tape and a cook book.   He is still in the phase where he loves Mickey Mouse, Brio trains, and stuffed animals.  Most 11 year olds are into sports, or science, or chapter books, so it was hard to emotionally ready myself this year to once again shop in the preschool department.  For some reason, this year it was harder than in years past.

The decision has been made that David will be staying in 5th grade next year.  He has an awesome teacher, an amazing team and is in a fabulous classroom.  That said, his buddies from preschool are all moving on to middle school.  David is not ready for middle school.  I know this.  However, I have been David's mom for 11 years.  After 11 years, including 6 in Elementary School,kindergarten-5th grade, he is supposed to go on to Middle School.  My friends will be touring Middle School this summer with their kids.  There will be school dances, parties and other life experiences that I thought we would be a part of, and we won't.  David won't notice.  This decision is good for David.  It just is hard for me.  Essentially this is a precursor for me to go through as there are more and more phases of life when my friends children are entering independence, and we are still functioning at a younger level.

In many ways this younger level is great- he still snuggles with me, watches Mickey Mouse, and goes to bed at 7:30.  However, my hopes and dreams for him; to play a sport, learn chess, win the spelling bee, and more have all had to be altered.  I have had to readjust, and most of the time, I have done so, with little problems.  I love David's youthful innocence.  I love his childhood passions.  I love that he still sleeps with 2 Mickey Mouse stuffed animals.  That said, I would love to see what he would be like as a typical 11 year old.  Would he be the star catcher on his team?  A track athlete?  Would he be in theatre?  Would he love the arts?  Who would he be if his DNA had come together as it was supposed to?  Who would he be if he didn't have the duplication on his 15th chromosome?

I know at the core he would be lovable, gentle, kind, and sweet- he is all these things already.  But the other pieces of his puzzle, will remain unknown at least for now.

Saturday, January 10, 2015

signs that I am doing it right

Sometimes as a parent we hear our child say things just as we say them and we moan...."ugh, he sounds JUST like ME!" and we wish that we were doing things differently.  As a mom, especially with Jacob, I have a lot of those moments.

 Today he and David were carrying a toy to the basement and Jacob started to scream, "hurry up David, help me NOW, I mean NOW, I need help" and he sounded just like I had sounded a few weeks ago as I was building the boys some furniture.  Sure, I could have been nicer, and I could have used a quieter voice, but as the piece was tipping and I needed help....well, that is just how things came out!

Today, as the boys were carrying toys, and Jacob was dropping his.....well, as he put it, " that's just how it came out....I needed help in a hurry!"

Last night however, I saw my favorite side of Jacob....we were at Temple for Camp Shabbat, and David was "off".  He was throwing his napkin on the floor, dropping crayons, and just looked "off". I was hoping he would be excited to be at Camp Shabbat because a staff member from his sleep away camp was going to be there and they would be singing camp songs.  I was hoping it would bring up good feelings for David, and he would be excited.

I'm still not sure what David was thinking or feeling, but my heart swelled as Jacob supported David through his struggle.  Jacob is amazing with David.  He often puts David's needs ahead of his own in order to ensure that David is happy.  Last night, as Jacob saw David was struggling, he started asking him questions:
"Are you happy?"- no answer
"Are you sad?"- no answer
"Do you miss camp?"- no answer
"Are you afraid you are going to have to go back to camp?"- no answer, but a long look at Jacob- our first hint....there is some worry about camp- Jacob immediately catches this and continues questioning
"Are you afraid you have to go to camp tomorrow?"- no answer
"Do you miss me when you are at camp?"- David's eyes fill with tears
"Do you miss David, Mommy, Jacob time when you are at camp?"- tears fall down
"It's ok, it's not time for camp.  We can figure it out.  Do you want this magnet?"

Immediately, a smile comes across David's face, and Shabbat peace resumes.  Jacob has figured it out, through kind, calm questions, and David never even said a word, yet Jacob has solved his worries.

Tonight we were at Staples getting our computer fixed and Staples is Jacob's favorite store!  He immediately ran off to go look for a new pen or folder, or something that he HAD to have for his art desk.  As he was looking, David found a folder that he wanted.  Without missing a beat, Jacob came over to tell me that he had 50 cents, but David really wanted a folder and a pen and they both cost 50 cents, but he wanted to be the one to buy them for David.  He was willing to not get himself a folder, so that he could buy David what David wanted.  

All of this making David happy, is done with such a calm, purpose, and with such joy for Jacob, that it makes my heart swell.  I hope that I can say that while Jacob may at times model my shortness, and my exasperation, that he also models my kindness and my patience!  I hope that a part of this comes from me......cause it sure makes me proud!

Sunday, January 4, 2015

December Vacation

We are at the end of December Vacation and it has been a long two weeks.  This has been potentially one of the most challenging vacation weeks we have had as a family for many years.

For David, I believe, he is loving his classroom so much, and the routine and structure, that vacation for him creates a challenge.  He is a child who thrives on routine, loves his new classroom, and therefore the unstructured days of vacation are a challenge.  He started vacation with many challenging days full of intensity but unable to express what he was feeling.
It is so hard for me as David's mom because I know he is feeling things, and I know that he hates to be defiant and I think it scares him when he is out of control, however I still need to respond to it and set limits for him so that he learns.  No matter how much you are missing school, or how unsure you are of your schedule for the day, it is not ok to scratch me and to yell at me and to throw things.  That said, when David is yelling and screaming, it is a more obvious scream for help.  He calms when I hold him close.  He calms when I whisper and he calms when i finally hit on what it is that is bothering him.

I am often unsure when it comes to parenting David.  It is hard to set limits when you don't know that the child understands.  It is hard to rationalize with a child who struggles to communicate.  It is hard to look at his eyes that are filled with sadness and know that he has a want or a need or to tell you something but that he is unable to communicate.  Luckily, once David's rage is over and his need is met, he quickly goes back to a calm space and he can be engaged in a puzzle, playing with trains or often some other quiet activity.  Given time, David will reconnect and makes amends once he finds calm and is back to feeling comfortable.
After a rough first week David seemed to settle into vacation mode, and has done relatively well since New Years Eve.

Matthew has had a rocky break as well.  He has had some great moments, we had a date that went well, and he has enjoyed some great time with friends.  However, many of his comments are scary and he has had multiple outbursts that leave the family shaken.  There is no way for me to know which of Matthew's comments are made for effect, and which are made because if it is in Matthew's head, it is said out loud.  That said, comments about pushing people over railings, and killing people are never funny and are never things I can take lightly.  I don't know what to do with these comments, except to tell Matthew over and over again what is socially appropriate, how he can better express himself and remind him of the consequences of poor choices.

He has been quick to anger over silly things- a slow car driving in front of us, creates  a panic for Matthew.  Someone looking at him, becomes a reason for him to yell.  Me taking "too long" to get ready, becomes a fight.  With Matthew you have to have a daily plan because empty time is reason for tantrums, however any plan that we have is talked about so many times that the fun is sucked right out of the plan.

For example, Matthew was supposed to go out to eat with friends of ours on Sunday and I told him about it on Saturday.  Every single time we saw each other, he had to make a comment about going out to eat.  Where are we going?  When?  Who is going?  What time?  How many people?  It becomes too much talk, and the fun is sucked right out of the activity.

On Saturday Matthew got upset because he drank almost an entire bottle of orange juice and so i told him that he simply could not buy an iced tea with his respite worker.  I wasn't upset about the orange juice, I simply set a limit that he had enough "junk" for the day. Unfortunately, this limit sent Matthew into a tail spin and he raged at me.  He ran at me and pushed me into the counter in the kitchen, he threw a massage toy at me, and he punched me in the back.  All the while, I spoke calmly to him and reiterated the rule.  I needed him to know that I wasn't upset, and i wasn't punishing him, he simply had already had enough "junk drinks" for the day.

Once his rage was over, he was over it....unfortunately, the impact of Jacob seeing Matthew push me was a catalyst for him to fall apart.  The entire evening was spent with Jacob in hysterics because he was afraid.  Once again, I don't know how "afraid" Jacob was, vs how tired Jacob was from vacation.  Jacob kept saying that I didn't call for help, but I was trying to explain to him that I didn't need to call for help because Matthew's respite worker was there, so we all just had to leave the house and could go along with our day.  Unfortunately, Jacob's own ability to either understand all of this, or make sense of it was a mess, and so he ended the day with an  hour long tantrum.

It isn't easy to be Jacob.  He has his own learning challenges that he is just becoming more aware of , coupled with a desire to be a helper to others, and often I fear that Jacob may crumble under the pressure he puts on himself.  Jacob is expressing a lot of anxiety tonight over going back to school tomorrow and I cant tell if it is because of some social issues at school, concern over school work, or him just not being ready to be back on schedule and routine.

If you had asked me when i adopted these three guys what I thought parenthood would look like, I would have never guessed it would look like it does.  I envisioned a constant stream of friends over.  Hours of watching movies together and family card games.  In reality, friends over is not typically a reality because of Matthew's unpredicatable nature.  Jacob, David and I love movies and need to watch more of them together- it is the perfect time for snuggling, and in place of family card games, we have started to do family puzzles.

Not quite the family I envisioned in my plans, and this was certainly not the vacation I had pictured, that said, if I look back over the 2 weeks we had time at the trampoline park, did 2 puzzles, each that had 1000 pieces, took on 2 new family volunteer projects, spent time with friends, and weathered the storms of our life.  Not our best December break, but honestly, not our worst either.