Reacclimating

I am trying to re-acclimate myself with my blog.

When I started this blog, I was in a place of crisis. One of my coping mechanism was to write.  As I wrote, I started to put some of my thoughts down in this blog.  As I moved out of the initial crisis of having two children identified with autism in less than a year and what that meant for our family, I moved on from writing as much. I continued to journal my thoughts, but not here. My energy moved to maintaining our life, working and carrying out therapies.

We are now entering a new path on our journey. Our almost 15 month old, third-born son is scheduled to be evaluated by a neuropsychologist at the end of this month. She will be administering the ADOS on my baby in just over a week. I am terrified. I can feel myself moving towards that place of crisis again.

I really can’t put into words how I am feeling right now. I am on autopilot and I have a wall up. I think I am not letting myself feel until I can make it through this appointment. The stuff he is doing, well it is one red flag after another and it is scary. I am trying to make myself feel something, anything and it just isn’t coming.  So instead of feeling, I am just doing. I can feel later.

As a coping mechanism, I find myself writing more. So I am here, to write and to cope and to re-acclimate myself with this place that was such great solace to me not that long ago.

One in Three

Recently, as most of us in the autism community probably did, I read this article.   Reading that

…in families with one or more children on the autism spectrum, the chances that a baby sibling will develop autism are around 1 in 5, more than double previous estimates of 1 in 10 to 1 in 30

although shocking, was not shocking to me.  I am living that statistic.  I have so many friends that I met in my support group that are living that statistic.  I frequent many blogs that are living that statistic.  It was a harsh truth to see in writing, but it did not shock me in the slightest.

What did shake me to the core was this quote:

In families with more than one older child on the spectrum, 1 in 3 infants eventually developed autism.

We very unexpectedly found out we were expecting in June.  I have never really felt what it was like to have a complete panic attack until that moment. My body shook with fear of the what-ifs that were instantly present in my mind and my heart.

When I got pregnant with A we had no idea that B was on the spectrum.  I have no guilt about getting pregnant with A and possibly having another child on the spectrum.  Fast forward to present day knowing that both of my boys are very clearly autistic and I got pregnant.

Right now I am scared.  I am carrying a child, that statistically, has a one in three chance of being autistic.  I am terrified to think that I am possibly bringing another child into the world that may struggle with speech delays, motor delays, social delays and perhaps even cognitive delays.

Right now we are 15 months post first diagnosis.  Most days I already feel like an old pro when it comes to juggling therapy schedules, IEP meetings, early intervention, social workers, insurance claims, meltdowns and all the other fun that comes with raising two special needs children.  I can do it for two, what would one more be.  I am not afraid of that.

Where does my fear lie? My fear lies in the what-ifs for this baby of ours.  My boys live life in a way that typical children do not.  As much happiness, joy and wonder as they have every single day of their lives, they also have struggles and pain.  What if this baby has the same struggles? What if this baby has even greater struggles than B and A? I will have knowingly brought a child into this world that struggles every single day.  That scares me.

I am scared that this child will be neuro-typical.  What will I do then? Will I parent the child to death because that is what I have to do with my other two? Will this new baby surpass the other two? Will I hyper-analyze every single thing this baby does for years and years? Will this baby feel like they are getting the short end of the stick because they don’t “require” as much parenting? Will I even know how to parent a NT child?

I am trying so hard to have faith.  I am clinging to the fact that no matter what the outcome, it will be OK.  We will be OK and this baby will be OK.

One in three is a pretty scary number.  One that shakes me to the core. We will shake through this though.  We will be OK.

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.

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.

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.

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