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.

Climb Up and Walk On

During the months leading up to and following A’s diagnosis in December, I hit a very low spot in my life. It has been coming on for quite some time now, but this was a breaking point for me.  I slipped into a dark place.

I am trying to climb up and walk on.

At the end of December, I started seeing a therapist for me.  Did you hear that? That is right, I said m-e, ME.

She is a wondering, caring, insightful woman who has special needs children of her own.  She is helping me to climb up out of the dark place I slipped into.  It is not a quick process, nor an easy process.  I am being helped along by a good new friend of mine, Zoloft.

During the past year, and especially the past six months or so, there are many areas of my life that have really taken a beating.  My home, my marriage, my job, friendships.  I could continue, but I won’t.  The important thing is I am working on building those things back up.  I am climbing up and walking on.

One of the things I am working on with my therapist is working on these things for me.  Her theory with me is that I am so busy taking care of everyone else that I have totally forgotten about me.  Not an uncommon thing to have happen to a mom of two young children.  Probably even less uncommon for a mom of two young, special needs children.

That being said, there is not reason to neglect me.  My husband, my children, my family, my friends and my coworkers all need me to take care of me.

There was a time in my life when I worked hard to find ways to get my husbands head to turn.  More recently, I quickly find my ugliest pair of sweatpants in hopes that at the end of the day he won’t want anything to do with me and I can just be left alone.  In the past I prided myself on always being responsive to my friends and family.  Now emails and phones calls often times go unanswered.  My job used to be a very important part of me.  I was always proud of my work because I worked hard to make a good product.  Lately, I find myself doing the bare minimum and spending a good part of the day just staring at my computer screen not knowing what to do.

I need to shine again.  I need to be a good wife, a caring friend and a successful worker.  Not because it is the right thing to do.  Not because someone told me I need to.  I need to do it because it is part of what makes me the person I am.  It is what makes me happy.

Going forward I am still going to be an awesome mom and a huge advocate for my children.  I will do anything to make their lives a little bit easier.  However, I am going to keep reminding myself to be me, to make myself happy too.

I am climbing up and walking on.

 

Another Little Boy, Another Big Diagnosis

On one hand, I cannot believe I am about to write this post.  On the other hand, I knew it was just a matter of time.

We had a medical evaluation for A yesterday.  I am numb with pain.  I am gripped by fear.  I am angry at God.

I am a mom to two boys with an Autism Spectrum Disorder.

Alex is only 20 months old.  Due to his age,  the evaluation team decided to use what is called the DC: 0-3, for children birth to three years old, instead of the DSM-IV criteria for ASD diagnosis.   Alex was diagnosed with Multi-System Developmental Disorder (MSDD).

MSDD is considered a “crosswalk” diagnosis to Autism and PDD-NOS. Had he been a little older, the psychologist said she would have diagnosed him with PDD-NOS.  We have to have him reevaluated in one year at which time they will determine how he will qualify under the DSM for an ASD diagnosis.  As A matures and we are better able to understand him, his diagnosis will be changed to either PDD-NOS or Asperger Syndrome.

I am happy to have some answers, but heartbroken to know his life is not easy and won’t ever be easy. I knew that, but it is just so definite now. It is a lot to take in.  It is just so unfair.

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.

Neglect

My blog has been neglected.  We are busy, busy, busy.  Mostly in a good way, but busy none the less.

A has been getting EI services for three weeks now.  The appointment we had this week, I think will prove to be most beneficial thus far.  The occupational therapist on his case was able to attend and has some great ideas to help us help him with some of his sensory needs.  While some things are happening on their own finally (like eating with his hands, not just a fork or a spoon!), we still really need some help from the pros.

A’s OT brought a Nuk Brush and a Sprinbrush to help A develop his oral motor skills and a bunch of bean bags of different textures and weights to help give A an outlet for his need for heavy work. We have been using the bean bags to try to redirect to an appropriate outlet when he starts throwing toys, and so far he has been taking fairly well to it.

B started going to an autism day treatment program two days per week, on his off days from preschool.  The mental health practitioner (MHP) that runs the room quickly decided that the next room up (rooms are based on the childrens’ needs and abilities, not age) would be more of a challenge and a better fit for B.  At first he was not pleased with the transition.  He was very upset about the move and kept telling us how much he hated his new class.  I had a nice talk with the new MHP and we decided that she would begin using positive reinforcements for B.  Voila! He once again loves his new school!

Those are two of the really big things going on in our lives.  Some of the other things are filling out paperwork and preparing for an autism evaluation for A at the end of this month, beginning to work with a social worker to get County-based services for the boys, appealing denied insurance claims, getting through the hustle and bustle of the holidays, carrying a heavy load at work and trying to just be some of the time all while in a constant state of sleep deprivation due to a certain one year that I know.  That last one, very surprisingly, is not getting the attention it should, but I am working on it.

Ahhh, that felt good to be back to my blog.  I need to keep using this place as an outlet.  Now…. I have some reading to do to get caught up with some of my other favorite blogging mamas!

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.

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