Jackson- from the beginning

baby jackson

I started this website talking about Jackson and the diagnosis with Duchenne Muscular Dystrophy, but we had a story way before that fateful day, so I think it only makes sense that I start from the beginning with Jackson.

To read about the Duchenne Muscular Dystrophy Diagnosis, click here. 

Jackson was born on April 17th, 2008

I went into labor the night before with him when my water broke at 4:45pm

I was in labor for 12 hours when he was finally born the next morning at 4:55am.

He was so adorable, had a TON of hair, and we immediately fell in love.

The first 3 days were great, but then after that everything quickly became difficult.

Jackson had a ton of feeding issues and I was in the hospital working with the lactation consultants like crazy.

He was losing weight, but refused to nurse.

I ended up having to pump and giving him milk that way and supplementing a little as well.

After every time he would eat he would then scream so intensely, for 1 1/2 – 2 hours, after EVERY feed.

I could tell he was in pain and thought it was gas, so tried a few different problems for that.

He ended up having some horrible colic that lasted until he was 4 months old.

It was SUCH a difficult time and it really made me question myself as a mother.

Once we finally found a formula (Nutramigen) a hypoallergenic formula and then mixed that with acid reflux medication and it seemed to do the trick.

Only 4 long months of colic and then we were on a much better path!

From that moment on I felt like there was NOTHING that I couldn’t handle, I’d already got through the most trying days with him, so I had no more fear looking ahead.

Everything was smooth sailing for quite some time.

It was around 16 -18 months that I began to have mother’s intuition and had a feeling that something might be wrong.

There were a few clear things that made my days extremely difficult and that was mainly the horrific meltdowns everywhere we went.

There was also the fact that Jackson wasn’t really talking at all and there was a complete lack of eye contact.

I am a lover of books and noticing these few things, I began looking things up and thought it could possibly be autism.

I enrolled him in an early intervention program for some guidance and it wasn’t the best fit for us.

Since he had no known diagnosis yet, they would almost use him as a guinea pig and try different things on him,

and more often than not I would pick him up and I would hear him screaming from an entire hallway over.

I still have a hard time with weighted vests…haha

I took him out of there and began doing private speech therapy.

We went a few times a week and in the meantime I researched the right doctor and found an autism expert in Ann Arbor, Michigan, named Dr. Solomon.

We would have to wait quite a long time before we could get an appointment and in the meantime Jackson saw many other doctors, but no answers came from any of the appointments.

Just frustration, fear, and tears.

After waiting months before we could see him,  Jackson finally got in, he was 2  1/2.

We spent 3 hours with the doctor, he assessed Jackson, played with him, got a sense of who he was, and it was a WONDERFUL appointment.

We walked away with a mild autism diagnosis and actually what should have been a dark, difficult day was actually a relieving day.

I had known for the last 8-10 months that something was off, but no one could figure it out.

It took an autism expert of 20+ years a couple of hours and he could tell me exactly where Jackson was and how we were going to get him better.

I learned that there was a school for children with autism that is ranked top in the country because of all the services they get:

Speech therapy
Occupational therapy
Physical therapy
ABA therapy
and Dr. Solomon’s approach, The Play Project

Not only do the children get time for socialization with other peers, they also get half the day one on one with a teacher.

They also had a giant play room/ sensory center that the children just LOVED. He began school when he was 2  1/2 and remains there currently.

He will be leaving in June and then beginning kindergarten in the fall.

To see the progress that came out of this school, followed by therapies at home, and also incorporating a biomedical doctor with supplements, Jackson has changed 180 degrees.

He is such a wonderful, sweet, calm, inquisitive boy. The teachers are amazed at his progress, as are we.

It’s not to say that the whole autism diagnosis was a piece of cake.

After being relieved to get the diagnosis and start receiving the right therapies, there was a lot of emotions I had internally.

I didn’t want to tell anyone that he had this diagnosis.

I didn’t want people to discount him, to think that he is unteachable, or to think that he can’t comprehend what was being taught to him.

It was so excruciating when other parents would ask why he wasn’t talking {he also is huge for his age so he looked 1-2 years older).

It took me quite some time before I told anyone about the diagnosis.

I just wanted people to love him and see him for who he was, not a label.

I read just about every autism book I could get my hands on and tried everything you hear about.

It was actually how we got to the Duchenne diagnosis,

we were meeting with our biomedical doctor, about to begin supplements,

when she ran that bloodtest and it went awry after that.

 I have learned that in this life you have NO IDEA what is going to be given to you.
You just have to consciously make the choice to move forward, be happy, have faith, and know that there is a greater plan and that it will all work out.

All is Well.

 

To learn a little about Duchenne, here is something I made up for Jackson’s new school, read here. 



3 Comments

  1. Charli

    September 1, 2014 1:38 pm

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  2. Melissa

    October 7, 2014 9:11 pm

    I just read this post and I felt like I just read my own story. My son is 13 months and was diagnosed with Duchenne 3 months ago. It was a long road getting to his diagnosis but it all stemmed from him being SO colicky. We too eventually resorted to Nutramigen and an ant-acid which solved our problems for a while until he had some routine blood work done and he had elevated liver enzymes. This then lead to his diagnosis of DMD.

    Like your son had terrible meltdowns, our son does as well. He screams…doesn’t cry, screams and screams. Just wondering what other things you noticed about your son and what made you think he may have autism.

    Thank you for sharing your story.

    • boymom86@gmail.com

      December 18, 2014 12:38 pm

      Melissa,
      I JUST saw this comment, I’m so sorry it took me so long to view, I don’t know what happened.
      Thank you for your lovely comment.
      It’s a difficult road, isn’t it.
      Our son wasn’t verbally communicating, that came after lots of speech therapy and he was around 4 years old, he didn’t make eye contact, he had terrible melt downs, and just an all around difficult time with situations. He hated a change in the routine, etc.
      How is your son doing?
      Is he about 15 months now?

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