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.

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.