Making Mommy Proud

Our neighbor’s grandson, J (4), was over playing with B (5) recently.  B asked if he could have him come in to play Lego’s.  They came in and headed downstairs to play.  When J, the other little boy, realized we had loads of Thomas trains, he no longer had any interest in playing with B.  B thinks he is too cool for trains, so they were just both doing their own thing.  After a while, J asked B why he wasn’t playing with him and B reminded him that he didn’t want to play trains.

I was just staying in the background watching their interaction instead of facilitating social communication and play at this point, when the most wonderful thing happened!  The following conversation was initiated by B:

B: “Hey J, you know what I like to do? I like to squish down in the box with all these balls, it feels really good.”

J: …looks at B like he is crazy! 😀

B: “So J, what do you like to play?”

J: “I just want to play trains.”

B: “Do you want to squish in this box with me?”

J: “No thank you.”

B: “So J, I know you like to play Thomas, but what else do you like to play?”

J: “I like Pokemon.”

B: “We don’t have any Pokemon.  You could go in that box over there?”

J: “No, I don’t think I would like it.”

B: “You know J, sometimes we have to try things even if we don’t think it will be fun.  You should try it, you might find out you will like squishing in boxes.”

J: “I don’t think so.”

Then B disappears into his box, A comes over and wants to get in with him.  They are laughing and having a good time.

J: “Do you think I could fit in that box with you?”

B: “Sure, come on in.”

These are the moments when I so clearly see how important intervention is.  It was so cool to see him using the social communication that he has been learning from us, in his social skills groups and in school in a real life setting.  A year ago, if this same scenario would have been happening, he would have remained completely oblivious to the other child, or would have thrown a holy fit because J didn’t want to do what he was doing.  Seeing this progress makes it all worth it!

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.

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.

Cha Cha Cha Changes!

I am hesitating writing this post out of fear that I am about to jinx a good thing.  But…. we have been seeing some really amazing changes in B recently.  I am talking BIG changes. Things that, if they continue to happen, are going to let me breathe a sigh of relief, but more importantly, let B have more enjoyment in life.

B began attending an autism day treatment program, 2 days per week, a few months back.  The first week he thought it was great.  During the second week, he figured out they had high expectations for him and he starting fighting tooth and nail about going.  For the next few weeks, we were persistent in getting him there and his teachers were persistent in following his plan.

Now, only months later, he is a changed little boy.  We cannot believe the things we are seeing.  And now because I am a proud mama, I am going to share a few examples.

Example One

At his mainstream preschool, his special ed teacher fills out a sheet with him at the end of each day.  There is a box for each activity, along with little pictures of the expectations for good behavior for each activity.  For the past 4 class sessions he has received smiley faces for all activities, save two days when he received straight faces at arrival time.  That is a huge success for him, and gives me hope that he is going to be OK next year in kindergarten.

Example Two

We also receive a note each day from his day treatment program.  On that note, B circles an emotion(s) about how he felt that day, and the activities he did in each area for the day.  The teacher also provides a short note at the bottom about his day.  Yesterday she wrote that B requested a sensory break during hello group because he was feeling too excited.  Another huge success!

He recognized his feeling and realized it was not appropriate for that setting.  He left the room for a few minutes with a room helper to give his senses a break and he had a great remainder of the day.

Example Three

B loves going to the indoor play areas.  Since we live in a cold environment, it is a good escape during the winter months.  Recently, we figured out that going to the PlayLand at McDonald’s is much more enjoyable during the breakfast hours.  There are fewer kids, less noise and no happy meals, thus no toys.

Last weekend, after a week of pretty brutal cold, we decided to pack up the kids and have some McDonald’s breakfast at PlayLand.  When we arrived we did not get out of the car before explaining our expectations for behavior.  We reminded B of the rules and also reminded him that first we would eat and then he could play.

We got in the building.  E went up to order some food and I took the boys in.  B went and picked a table, took off his jacket and shoes and sat down.  Without a single reminder.  He sat nicely at the table waiting for food.  During that time there were two moms, each with two boys, eating in the PlayLand.  The boys were all acting awful and the moms were just yelling across the room instead of actually disciplining them.

There were a few moments when I saw B’s eyes change and I thought I was going to lose him, but he held strong! No behavior modeling, no complaints about eating first, nothing.  I was amazed! He ate a great breakfast and then played nicely, using an indoor voice, for over an hour.  He needed a few reminders, but quickly corrected his behaviors each time.  I had to double check that I had the right child!

I am so proud of my boy.  He is going to be OK.  There will still be tough days, no doubt, but we are turning a corner.  My husband and I have found ourselves giving each other that look with mouths agape in amazement and our hearts swelling with pride a lot lately.  We are changing and change is good.

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.

B’s Funnies for the Week!

My little man says a lot of off the wall things that typically send us into silly fits of laughter.  I love sharing all these funny little things and I hope to incorporate them weekly (or so) into my blog.  I hope you enjoy…

In response to my husband saying going out to eat sounded stressful:

Daddy, it won’t be stressful, it will be therapeutic.

At church, during a sermon about God warning us about being endangered:

I would believe God if he told me I was in danger, but I don’t trust that guy!

During a drive by we did after hours at his school:

B: well mommy, we will just have to go incotego.

Me: Do you mean incognito?

B: Oh yeah, incognito, we will just have to sneak right in there.

During a conversation about why I married Daddy, even though he has lots of scratchy, annoying hair:

Mommy, maybe someday I can marry a pregnant girl.

His explanation for why we couldn’t take his training wheels off:

Mommy, I could fall down, hit my head, crack my skull and lose all of my knowledge.  We should wait until I am at least five, or maybe even six. (We have since taken the training wheels off and he is doing great!!!)

….and my new very favorite story….

In response to why he was cutting the hair off of his horse on a stick:

I had to cut his hair because I needed a DNA sample to test in my invisible lab.

Five Years

To my biggest boy:

Five years ago, on this very day, you made me a mom.  It was one of the most amazing days of my life.  I still remember the moment the nurse handed you over to me; I had never seen a more beautiful face in my life.  I was in love. I was a mom.

The days we have had together since then have been nothing short of amazing.  You are the most caring, loving, compassionate little boy I have ever known.  You are funny and smart.  You are creative.  You have a love for life unmatched by most.

You have taught me so many things in your short life.  You taught me the true meaning of patience.  You taught me to never judge others, because you just don’t know what their situation is.  You taught me that a love a mother has for her child can create an unstoppable force in the world.

Did I mention you taught me patience?

When I found out I was pregnant with you brother, I mostly daydreamed about the two of you together.  I knew you would be a great brother, but the love you have for him outshines anything I could have ever imagined.  You are the best big brother in the world!

I can’t wait to see what our fifth year together brings.  I can’t wait for the smiles and laughter; the hugs and kisses; the new milestones; the funny things that only you can come up with; the tears; the struggles we face.  We will do it all together and will come out better at the end of the next year; we always do.

Here’s to a great fifth year, my boy.  Happy Birthday. Love, Mommy.