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.

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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.

Tears in my Chicken Soup

I cried last night.  I cried hard.  I cried like I have not cried in a long time.

I cried over a bowl of chicken soup.

My two picky little eaters have taken a liking to a certain brand of canned chicken noodle soup.  Although I am able to buy it in bulk, the spot on the shelf for the soup empties weekly.  In an attempt to save some money and offer a slightly healthier alternative, I decided to buy a few rotisserie chickens, carrots, celery, onions, rotini noodles and chicken broth.  My dad (because my time is very limited lately) graciously offered to make us a bunch of soup and portion it out so we could freeze it and easily serve it for lunches to the boys.

The soup arrived last night, and I excitedly warmed up a bowl for the boys to try.

It was a huge failure.

B took one bite and refused to eat anymore because, “the broth tastes different and the chicken is kind of….oodily.”  The soup was not exactly the same and therefore, he did not want it.  I got down on his level and acknowledged his feelings.  I let him know that I understand that he likes things to be the same and when they are not that makes him uneasy.  We talked about that we might not always get what we expect, but that we will be OK.  I asked him if he thought the soup being different was a big deal or a small deal, a technique we are implementing in day treatment and at home. He responded, with tears in his eyes, “It is a big deal.”  I gave him a questioning look and the tears started rolling and he said, “I know you say it is a small deal, but it is a big deal to me.  I makes me feel like I have lots of energy because it isn’t the same.”

I couldn’t respond in that moment.  I was so proud of him for being able to acknowledge those feelings, but so sad that he was having such big feelings about something so small.  I gave in to him and popped a bowl of oatmeal in the microwave and moved on to feeding A the soup.

He got a big smile on his face, pounded his little fists on the table and yelled, “Soup, soup, yummy!” He took one bite and quickly cringed and spit it out.  Second bite, same result.  He tried one more time, and started whining and saying, “Icky, soup icky.” For him it was the fact that the chicken was shredded up and sticking to the carrots and noodles.  His oral defensiveness does not allow for multi-textured foods to pass his little lips.

He became mad and I became even more sad.  Why does something as small as a bowl of soup have to be such a big deal?  Why do I have to see these little guys constantly becoming anxious and upset? Why does it have to be so hard, all the time?

After everyone was asleep for the night I sat down and my mind began replaying these questions over and over.  My heart was heavy and the tears started.  Slowly at first, but as the questions kept replaying in my mind and I pictured the anxious looks on my boys faces when the soup hit their lips, the tears turned to sobs.  My whole body shook and my tears stained my cheeks.

Once the tears subsided, I felt a little better.  I stopped and reassessed the situation and marveled that B was able to articulate so well why he didn’t want the soup and that A was pairing words together.  I decided that just because they didn’t eat the soup, didn’t make it a failure.  They still showcased some other really great skills that we have been working so hard to achieve. They did well.

I am becoming more at ease with this stuff most of the time, but every once in a while, it will hit me like a ton of bricks.  And boy do those bricks hurt.  I do wonder if that will ever go away, or if there will still be tears in my chicken soup twenty years from now.

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.

My Guiding Light

May of 2010 was a tough month for me.  We got the official word that B is on the spectrum.  During the weeks following that fateful day in May, I tried my best to get all my ducks in a row.  I was learning the  ropes, the processes, the in and outs of the system.  And I was trying to do it on my own.  And it was not working.

I needed help.  I was beyond stressed out and I didn’t know where to turn.  I tried getting in touch with the autism specialist that was assigned to B’s case in our school district.  She emailed me, what I realize now, is a fantastic document with everything you might need to know about finding resources in my area.  At the time, though, it was useless.  I didn’t understand the jargon.  I didn’t know which step I needed to take first.  I couldn’t put one foot in front of the other and get done what needed doing.

I was crying every single day.  I felt like I needed to accomplish a million things, but nobody would stop and explain to me what they were.  My life was falling apart around me and I didn’t know how to fix it. My friends and family were wonderful.  They encouraged me and gave me a shoulder to cry on, but they didn’t have the answers I needed.

In early June, I went back to the copy of the autism resource guide I had received to give it another shot.  I still didn’t understand much of what I was reading, but I did stumble across a section about community supports.  Right there, in the middle of the wealth of information, I found what has become my guiding light.

On June 15, I attended my first Autism Support Group meeting.  It was glorious.  Not only was this group of parents willing to let me cry on their shoulders, but they were able to answer my questions.  They were able to nod in agreement.  They were able to really understand what I was going through.

I left the meeting that evening with a new determination.  All of these people were doing it.  If they were making it in this confusing, whirlwind of a world, I could too.

That night, I joined the group’s list serve email group.  I now not only had a physical place to go once a month, but also a virtual place that was there for me every day of the year.  I started posting questions.  I was getting answers.  I was able to take some baby steps.

My friends and family continued to provide me with a level of love and support that could not be matched by anyone. They have been taking those baby steps with me.   They carry me on this journey.

This may be a bold statement, but I am going to say it: the single most helpful thing I have done since starting our autism journey, is to join a local parent support group.

I have attended every monthly meeting since June.  I check our list serve most every day.  I joined our group to walk for Autism Speaks.  I went out to dinner with several ladies for a mom’s night out.  I email and talk to several mom’s with similar aged children.  They understand.  They commiserate.  They answer my questions.  They are my guiding light.

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