Graduation Week!

This is a week full of graduations for our B.  On Monday, I attended his preschool graduation and today he is graduating from his Autism Day Treatment program.   It is bittersweet.  He has come so far that I am afraid to let go of the amazing people in his life that have helped him to grow and learn so much during the past year.  Below is an email I sent to the staff at his Day Treatment program today.

I wanted to email to express my thanks for all of the hard work that you have put in with B over the past seven months. However, to just say thank you does not even begin to show the gratitude that we, as a family, feel towards all of the great people at F_____.

It was just over a year ago that we received B’s “education autism” identification. In that moment, I could not see the future. My heart was completely broken. I could not imagine what this would mean for us. B had always been so “ahead” in so many aspects that when he started falling behind in some areas it was completely foreign to us; we were totally blindsided. But, we knew we had to pick up our chins and get him the services he needed because there was just one short year until kindergarten started.

When we went through the process of having B evaluated at F_____, one of the recommendations was attending Day Treatment. For us, it was a no-brainer. After hearing about the program from the evaluation team and visiting the Day Treatment facilities, we could see that this would be a great opportunity for B to work on his skills.

Fast forward one year, to the date, of receiving B’s education autism identification and I am sitting at a kindergarten transition meeting getting one of the best compliments I have recieved as a parent. B’s preschool case manager began the meeting by describing B to the transition team. She started by telling the team, “…I literally get goosebumps when I talk about B because he has made such amazing progress this year.” Wow, talk about a proud parent moment.

We could not have got to this point without the help of the staff at F_____. You have helped B learn and refine so many great skills. The progress we have seen at F_____, in preschool, in our home and out in public is astonishing. He has grown and learned so much. I can see the future now and I absolutely know in my heart that B is going to succeed. He is going to succeed in school, he is going to succeed at making friends, he is going to grow into the wonderful, caring, funny young man I always pictured him to be. It will always be work, but it is going to be OK. No, it is going to be great!

So, thank you. Thank you from the bottom of my heart. You have changed our lives so much in such a short period of time. You will all be missed very much, but you will not soon be forgotten in our house.

I am shedding many tears today.  Happy, joy filled tears.  Today is a good day.

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What a Difference a Year Can Make

As the month of May settles in, I am finding myself becoming a little emotional.  At this time last year, the A word was just creeping into our lives.  We were filling out paperwork galore, answering never-ending questions, attending evaluations and having our eyes opened to a new world.  A world that we had been living in for years without really knowing we were there.

In three short days, we will hit the one year mark of receiving B’s diagnosis.  That awful day in May when I got the call from the school psychologist.  She said the words to me that no parent ever imagines they will hear, “your child is on the autism spectrum.” I froze in my desk chair, hot tears streaming down my face.

Autism? What did that mean for his education, his future, his life? What changes were we going to have to make for our family?  Is he ever going to make friends? Is this what  a broken heart feels like? Oh my gosh, my husband, how am I going to tell my husband? What will our friends think?  Will our family support us? Does insurance cover treatment? How am I ever going to put one foot in front of the other and continue moving?

The questions were whirling through my head.  I wrote down some dates of when we would need to meet next, but I was no longer listening to the voice on the other side of the phone.  My world had just been rocked.  Thinking back to that day last May, I would have never imagined we would be where we are now.

In the past our family has received the following diagnosis:

B: Asperger syndrome, Sensory Processing Disorder, near-sighted vision accompanied by tracking issues;

A: Multi-System Developmental Disorder, Sensory Processing Disorder, Sleep Myoclonus;

Me: Depression, Anxiety.

We have gained the following services:

B: Early Intervention preschool services through the School District, Day Treatment services through a local autism program, Medic-Aid through the State, a community based grant through the State.

A: In-home early intervention services through the School District, pubic health nurse services through the County, Day Treatment services through a local autism program, Medic-Aid through the State, a different community based grant program through the County.

Me: A wonderful counselor that talks to me twice, monthly.

It has been a long year full of countless changes.  It has been difficult and taxing and emotional, but I wouldn’t change a bit of it.  Why? Because we have also experienced some huge, amazing, wonderful changes as well.

Last year during our spring preschool conference, B was having a very difficult time.  Academically, he was able to keep up and was even complaining of it not being hard enough, but he still needed a lot of support.  He was having difficulty with his peers, he was having a hard time sitting with the group, he became unruly during gym time and overall was requiring a lot more one-on-one assistance than the other children in his classroom.

This years spring conference was like night and day.  During the school year, through trial and error, we have found a combination of supports that have ensured that almost every day at preschool is a great day! B is now playing with friends during free play time, is able to stay with the group during large and small group activities, is no longer over-stimulated by the gym and is able to be a lot more independent in the classroom.

We are also experiencing some amazing changes in our home.  Again, through trial and error, we have found things that work to help B be more independent in his activities of daily living, he is sleeping better and is just all around better adjusted.  He is a healthy, happy five year old boy with a few extra supports.  That is all.

A has also made some amazing changes.  Through the help of his EI team, he has weaned from daytime nursing, is putting together multiple words in sentences, is moving away from always talking in scripts and is also just so much more well adjusted than six months ago.

Life threw us a curve ball a year ago.  We could have watched that ball go by, but we chose to swing for the fences and baby, it was the best decision we ever made.  My boys are growing and changing every single day for the better.  I can only hope that the next year will be half as amazing.

Our family was forever changed that day last May, but my heart is healing and my feet are moving, one step at a time.

Happy Two Years, Baby Boy

Two years ago, this very moment, I was sitting in a hospital bed, eyes barely able to keep open, looking at your beautiful face, baby boy.  As I sit here now listening to you breath over the baby monitor, it is hard to believe that we have been together for so long.  You have brought our family so much joy and happiness during the past two years as well as teaching us about many challenges we never knew we would face.

Baby boy, you have brought us more memories than we could ever imagine.  Your voice melts the heart, your laugh is contagious and your smile speaks a thousand words.  We are so proud of everything you are becoming.  You know your shapes and colors.  You are great with a shovel and pail.  You love trains and cars.  Your favorite color is yellow, just like your mama and you are a spitting image of your daddy.

You have also taught us a million little lessons.  You have trouble with self-regulation; we now know just the right ways to calm your body.  Food can be extra tricky for you; we are learning how to soothe the effects of oral defensiveness.  Sleeping through the night is a myth in our house; we now know the joy of feeling the breath of a tiny boy on our chests at 3 A.M.

Baby boy, you have given me one of the most awesome gifts I could have ever asked for.  You made my big boy a brother and it is beautiful.  You are the apple of his eye and give him a light that has only been seen since the day you were born.  He misses you when he is at school and you likewise scream with glee when you see his bus pull up.  I have dreamed of watching you two grow into the best of friends.  Each day,  I see that bond grow and smile thinking about the wonderful gift you are to each other.

The past two years have been amazing and difficult and filled with more love than I will ever be able to explain.  We look forward to learning and growing with you during the next year.  We love you baby boy, happy birthday.

My Everest

Recently, my husband, the boys and I traveled to my in-laws house for a birthday dinner for my niece.  During the drive home, my husband and I had a wonderful conversation about our life and how it compares to that of our childless friends.

A few nights previous, one of my husband’s close friends, who happens to be childless, started talking about how he wants to do more with his life.  He feels like he needs to be accomplishing and experiencing life more.  For purposes of this story, we shall refer to this friend as Dan.

Dan works as a fire fighter.  Dan apparently has an array of talented coworkers. He was telling my husband tales of one coworker that is an amazing skier.  He works for 9 months of the year, and then spends 3 months in the winter skiing in Veil.   He stars in many videos about skiing and has managed to send every non-skier friend that has come to visit him, home with a broken bone.

There is another fire fighter, in his department, that is a professional cyclist.  He has a bike that he purchased for something like $30,000 and bikes to and from work every day.  In the evenings, he takes the scenic route home, that is 75 miles long.

I guess being around people such as the men above is making Dan feel inadequate.   He was asking my husband what he thought he could do to experience life more.  They talked about snow-showing, hiking, vacationing to exotic place, climbing mountains and many other things.  When Dan asked my husband if he would want to join him, he had to stop and try to explain to Dan what our life is like.

He said to Dan, “You have to understand, my boys are my Everest.”

There has never been a truer statement.  Since becoming parents, our experiences and accomplishments have been based upon what we can do and are doing to make their lives better.  Our success, as a whole, is so heavily weighted by the happiness of our children.  Their future is off in the distance, atop that great mountain.

On the day that we found out we were pregnant with B, we looked up that treacherous piece of rock, unsure what path we would take or if we would ever make it to the top.  But climb we did.

At the beginning, we took baby steps.  Our footing was unsure.  We didn’t trust our equipment to break our fall.  We weren’t used to the climate and the air, but we were trying.

As time has gone on, we have become more confident in our climbing skills.  On good days, we are able to navigate this mountain pretty well on our own.  On more difficult days, we are learning to rely upon the help from our village.  We have trail guides, Sherpas, medics and other climbers who help us on our journey.

Our climb has changed dramatically during the past year.  It is still changing every day and I imagine will continue to change on a daily basis for the rest of our lives.  The 2010 calendar year has proven to be the toughest leg of our journey since becoming parents, but I wouldn’t change it for the world.

I have days were I look down and just want to retreat to the bottom of the mountain and call it a day.  I never do though.  Instead, I look at my two little boy and find the strength to take another step.  They give me strength to be the best mother in the world; to find my way to the top of the mountain.

Getting an Asperger diagnosis for B was like getting a trail map.  Before the diagnosis, while we were very familiar with our son, there were just some things we didn’t understand about him.  With the diagnosis we are starting to learn.  We have a map, we have tools, we are slowly finding our way on this journey.  And it is an amazing journey.

I don’t need snow-shoeing or exotic vacations.  I can live without a fancy bike or skiing trips to Veil.  I get to live an amazing journey everyday.  I have my Everest.  It is a difficult climb to get where we are today, but boy is the view beautiful from where I stand.

It is Official

B officially has Asperger syndrome.  We had his medical diagnosis last week.  I think it was the first time I left an appointment like this feeling hopeful for the future and really wanting to continue moving forward.

The organization that we chose to work with for his diagnosis is really outstanding.  They are a not for profit, local organization that is a leader in autism and other special needs services in our state.  Every time I have visited their facilities and met with their staff I have felt a sense of comfort and understanding.  Last week was no exception.

Our appointment began at 9:00 a.m.  In typical fashion, we were running behind, but we made it.  I was worried that B would have a difficult time attending to the tasks they had for him, but the psychologist said he did wonderful.

My husband (E), B and I were at the clinic for three and a half hours during which time one child psychologist interview E and I and one took B into another room where she evaluated him and performed IQ testing with him.

Not surprisingly, B scored quite high on the IQ testing.  However, his social and emotional abilities are scoring far below his age.  None of this was really new news to us, but it was just presented in a way that was so hopeful.

The psychologists laid before us, quite a few recommendations and explained to us how each of those will benefit him now and how it will help to shape him in the future.  It felt really good to think about the future in such a positive light, instead of thinking about all of the deficits right now.

One of the options they suggested was a day treatment program that is run at their facility.  B would attend the program two days per week, for three hours per day.  The program is designed that B would be in a classroom with peers that have similar needs and abilities.  Each room has 4-6 children and 4 teachers, so B would get a lot more individualized help than he is getting in his normal preschool setting.

In addition, B would have a development plan written specifically for him, similar to an IEP, that would spell out the goals they want him to meet and what they would do to meet them.  The program uses mulit-perspective approaches to intervention, so each child gets what works best for them.

The core of treatment done during this time would really focus on giving him skills in the areas of his social and emotional development.  Currently, his school readiness does this as well, but not at the level that is appropriate for him.  While he is making some progress, it is not enough to bring him closer to his peers. They are building their skills as well, and moving even further away from him in this aspect.

The program would also work pretty diligently to find strategies, that work in the classroom, to help B with his sensory needs.  As it stands, most of his day is spent just keeping him regulated and he is really missing a lot of the school day due to his high level of needs for his sensory system.

With kindergarten starting in 10 short months, we feel like this is going to be an amazing opportunity for B.  He is still at a stage where he really loves going to school and seeks out learning every where he goes.  He also does not realize, fully, that he is so different from his classmates.

We are hoping that with this day treatment program, along with his current schooling and some other private therapy options that we are pursuing, that B will be able to function next year in the classroom and put all those brains he has to work.  He is a smart little cookie and we don’t want him to lose that because his sensory system and social and emotional skills hold him back.

Hope.  Today, I have it.

In Their Eyes

Whenever I hear someone say, “the only kids I like are my own” it makes me cringe.  You see, I have one (or two) of those kids that sometimes melts down in the middle of Target, has an insatiable need to touch everything and everyone in sight, is powered by the sun apparently, because they never run out of energy, will talk your ear off… You get the picture, I am pretty sure my kids are the type that make people make this statement.  In their eyes, my kids are not likable.

In my eyes, my children are perfect.  I have been working hard to gain a more realistic view of my children compared to their peers.  I have only ever known how to be a parent to my children, my adorable, sweet, high maintenance children.  I have grown so accustomed to working with, or sometimes around, their difficulties, that I lost sight of what typical development looks like in a child.  Through the process of having my boys evaluated, I thought I was gaining perspective on this.

As a part of the medical evaluation that we are having done for B next week, we needed to have some paperwork completed by his teacher.  She quickly got it done, and sent in back home in B’s backpack, sealed in an envelope.  Since I have become quite anal about organizing the mountains of paperwork, I make a copy of everything that we fill out to keep in my file as a reference. Yesterday, I brought that envelope to work with me so I could make a copy.  Bad idea.  Bad, bad idea.

Seeing your child in another person’s eyes can be quite painful.  Especially when you have an impulsive, high energy child that does not understand socialization, but yearns to make friends, doesn’t quite understand how to control their body and becomes grossly overwhelmed when their senses are stimulated.

I, apparently, still do not understand the extent of differences between B and his typically developing peers.  Almost every question on the form was answered on the extreme ends on the rating scale.  The questions that particularly started my heart on fire were: is disliked by other children, answered pretty much and makes friends, answered not at all.  The knots are twisting in my stomach and tears welling in my eyes again as I write this.

Not only did I have to see B in her eyes, but I caught a glimpse of B in his peers eyes.  It hurts my heart.

Hurting or not, I am trying to take the positives out of this situation.  A few things I have come up with:

  • When asked if B teases other children or calls him names, she answered not at all.
  • His teacher wrote that his strengths are being highly intelligent and articulate.
  • B’s teacher is very interested in learning new ways to help him in the classroom.  She asked to receive practical applications for behavior and sensory strategies for the school setting.
  • I have learned to fill out evaluations based on the worst day.  I assume his teacher uses this same practice, which is for his benefit.
  • Most importantly, B loves preschool.  He does not notice the differences, or dislike by his peers, yet. We are being handed the opportunity to help him before he starts noticing.

Today is a new day.  I am re-framing my thoughts.  My heart may still be smoldering from the fire yesterday, but the flames have gone out.  Today, I am thankful for his teacher’s honest opinion. For without her eyes, B may not get the things he needs to grow into the beautiful, compassionate young man I know he can be.

To Know Love

One of the things that gnaws at my heartstrings whenever reading about Asperger Syndrome, is the social interaction piece.  When I read things such as, “singled out by other children as weird or strange” or “failure to develop peer relationships appropriate to developmental level” or even see a picture of one child left out of a group, my heart aches.

B loves people; he is an extrovert extreme and lives for meeting new friends.  Another child in his class, a neighbor walking by on the street, a same-aged child at the park or a random stranger in the grocery store.  He wants to meet them all, but more importantly, he wants them all to be his friend.  Social anxiety and stranger danger are not phrases found in our vocabulary.

Sadly, I am already seeing his peers looking at him with hesitation when he so eagerly introduces himself.  B’s standard greeting is, “Hi, my name is B.  I am an older four.  Would you like to be my friend?” The general response… to take two steps back toward their parent, look uncomfortably up at me and shy away.  Sometimes, he is lucky to find another boy or girl who jumps right in to friendship with a simple greeting, but most of the time the other child moves away and B is left feeling sad because his attempts at making a friend failed yet again.

During B’s evaluation by the school district the school psychologist assigned to our case went into B’s classroom to observe him.  She noted an interaction that I think is pretty typical of B with a classmate.  During choice time, B went to an area in the classroom where blocks were set up.  B asked his classmate if he could help him build his tower.

The classmate responded, “No, I don’t want you to play by me.  You always knock things down and I don’t want my tower knocked down.”  B responded back to his classmate, “I would never do that to my friend.  I will not knock down your tower, you are my friend.”

I truly believe B meant what he said; he would never do anything to hurt his friend.  Of course, within about two minutes, B misjudged his body in space and sent the tower flying.  He was quick to help the child rebuild the tower, but the other boy no longer wanted him as a play companion.

Some of my biggest fears are that B will not have friends, that he may never marry and that he may never get to experience the joy of having a child.  He is loved abundantly by my husband and I.  His brother adores him.  His grandparents, aunts, uncles and cousins fawn over him.  I am still scared though.

Since the day I found out I was pregnant with B, one of my main dreams was for him to know love.  I want him to know the love of a best friend who can be called on during the middle of the night when he has a problem in his life.  I want him to know the love of a spouse who treasures him, just as he is.  More than anything, I want him to know the love of a child.  That pure, beautiful, fully consuming love that can only happen between a parent and a child.

My biggest hope for B’s life is for him to know love.  Pure, simple love.