A place for parents of special needs kids

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Our story

Our story – the VERY abridged version.

When your child is first born, they are perfect. In your eyes anyway. My son, J was born a little less than three weeks early. He did well on his APGAR score. He was a happy baby. He was inquisitive but not precocious. He slept well. He ate well. He smiled a lot. He made eye contact. He loved affection. He listened when you spoke. He responded in turn.
J was verbal very early. Somewhere around six months he said “Mama” and “Dada”.
He never crawled. He began a fascination with electronics. He had rituals that could not be altered. We would go visit my grandmother every week. He was absolutely fascinated with the ceiling fan in her living room. We would walk into her apartment, he would point to the wall switch and hitch his head back to watch the fan movement.
He walked at fifteen months old. His speech wasn’t venturing beyond “mama, milk” or “mama, paci”. While the other kids in Gymboree were strong and able to master certain physical tasks, J was still chasing after the same balls he did when he started the class a year before.
At his second birthday party (when I was 8 months pregnant with our daughter), I noticed that the other kids, boys and girls alike, were stringing together sentences and questions, not two or three word utterances. The other kids at the party were all over playing with different toys, while J stayed in the corner where the bubble machine was spewing out bubble after bubble. It was sheer joy for him. He was happy, so why was I beginning to get more and more concerned?
When it was time for him to start preschool, I wondered how they would ever be able to get him to sit still for circle time. I wondered how, in this loose Montessori based environment, he would be able to lead his own education. How would he go from what was basically free play, to learning a Practical Life lesson?
Within two months of his starting at that preschool, I was told that a private speech therapist had come in and evaluated all the students for ten minutes. Ten minutes???!! What could you tell about a child in ten minutes?
Well, apparently, the speech therapist could tell that J had a receptive and expressive language delay and that she wanted him to start speech therapy right away.
Hey, hold on there lady, let’s take it one step at a time here!
So, that’s what we did. First we began the process with Early Intervention, which took months. What they determined in their ridiculously unfair assessment was that J needed speech and occupational therapy three times a week.
What was going on? Our pediatrician (who, by the way, had previously focused her practice on neurodevelopmental pediatrics for years) thought that there was nothing at all out of the ordinary with our wonderful son. He hit all his milestones. So what, he never crawled, he walked within the parameters for a “typical” child. This was her reasoning.
We still had no diagnosis. We opted to not go through Early Intervention but, rather to go the private route for speech therapy, once a week, with someone who would come to the house.
This was our first of many mistakes. The therapist and J did not mix. Her approach didn’t waiver, and it wasn’t appropriate for J. So, we were at an impasse.
What happened next is what all parents fear. When I pressed the clinician for a reason this was going on with Jackson, what was causing this, what was this CALLED, her response was, “Look up PDD on the internet.”
So, I did.
Just like oncologists tell their patients to never Google their form of cancer, a clinician should never tell a parent to Google their child’s diagnosis.
So, that night, while my husband was putting Jackson to bed and my baby daughter was asleep, I took out my laptop and typed “PDD” in my search bar.
What came up on the screen was shocking to me. Was this person saying that my child was autistic? But…he speaks…and he engages…and he laugh…and he loves to be hugged and kissed. NO WAY WAS MY CHILD AUTISTIC!
The next week when she came for our appointment I told her that she was way off base and that she clearly did not know my child.
Well, that was partly right. And this is where my ever-growing understanding of PDD began.

We had a few more sessions with this therapist and then we went our separate ways.
J was diagnosed in June 2010 as PDD-NOS, sensory seeking and ADHD.
By this time we had found a new speech therapist and an occupational therapist. These people changed our lives forever. For the first time in J’s life, someone was telling us how wonderful J was. They were telling me he had strengths! They loved him and helped me love him even more. Sure, there were a ton of things J needed to work on, and we needed to do for him at home but this set us on the road for success, not failure. Something these people taught me to always strive to achieve for my son: set him up for success, and not failure.

We stayed with that practice for over three years. J had both speech and occupational therapy twice a week.

We began working with a Child Psychologist. J went to Social Skills classes.

He was improving and my life was getting a little bit easier…and, more importantly, so was his.

That’s the first chapter, in a nutshell.

But, the saga always continues…
If I have one piece of advice for parents out there with a special needs child, it is to always follow your gut (that is, of course, unless you are a notoriously bad judge of character, then maybe just go on sheer facts and the advice of others).

Since his diagnosis, he has had more appointments than most typical kids have in their entire childhood. We have worked with some wonderful doctors, clinicians, behaviorists, psychologists and clinicians. We have also worked with some duds as well. From the great ones, we have learned and grown but we have also taken things with us from those who couldn’t help us as much as we had hoped. We learn that our opinion about our children is deep rooted in our hearts and our minds. We take with us the knowledge that we made a mistake and our child is better for it because NOW we know what didn’t work, or what they don’t like or how they react to certain people differently. All of my experiences as J’s mom have taught me something about him, and about me.

Today, J is in a typical classroom with his own aide. We have had to battle our school district for some of his services (which you all know is not uncommon) but it was well worth it. Remember, you are always your child’s best advocate. We did, however, hire a lawyer/ advocate to help us with our struggle and that too was well worth it.

J is about to finish first grade and, thanks to a wonderful team of teachers and therapists, it has been his best school year! We cannot thank them enough.

We still struggle with transitions and diet. We still lose our cool far more often than we would like but, at the end of the day, we can rest our heads on our pillows and know that we are trying. Every day is NOT a success but every day is not a failure either. We take with us the knowledge that we CAN do better for J. We WILL do better!

Like I said, this is the very abridged version of our story and it is ongoing. J has opened up a part of my heart that I never would have known existed if I had a typical child. I never considered myself a patient person, and I wouldn’t necessarily call myself that right now either, BUT, he has taught me to let my expectations go and to celebrate the small victories life gives you in every aspect of my life. I cannot thank him enough. I love him more than words could ever express.

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