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.

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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.

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.

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.

 

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