Your child's best advocate is you

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Posted Tue, Apr 13, 2010

Kindergarten has been a long time coming for us.

For most people, it is simply the next step after preschool and the scary beginning to the hopelessly speedy race through their childhood.

When my son Ewan was 2, he was flagged at his school, Auraria Early Learning Center, for speech problems. I ended up butting heads with the speech therapist there at the time because he was talking at home and I didn’t know why he didn’t speak or participate at school.

“He should be able to pretend that this is a bowl full of food for the baby doll and he just can’t do that.”

“Well, I think he doesn’t play with the doll and just doesn’t want to pretend that that bowl is full. He keeps telling you it is empty which it is. Why does that make him wrong?”

I thought she was an idiot. Period.

She said he needed extra help at home and so our journey began…. Does he have a disability? Does he have a hearing problem? Does he have the dreaded ADD?

We spoke to his doctor, got his ears checked-several times, continually didn’t qualify for therapy because he was testing too high until we were able to pass on official testing from our  speech therapist at  school.

Just before Ewan turned three, an occupational therapist, Kristen, came on board at AELC.

She asked us a variety of questions- Does he seem to shut down or get hyper when you are in large groups? Is he bothered by loud noises such as public restrooms? Can he make eye contact with you? Is he social? Does he talk at home? Yes, yes, no, no, YES.

Her suggestion was that maybe he has Sensory Processing Disorder.

EVERYONE has sensory issues. It is just whether or not you are bothered by them, can get by with them, or if the interfere with parts of your life… like school.

After talking with her and observing Ewan more at home and in different places; working with him in the simple manner that she had suggested (light pressure on his arms to get his attention and help calm him down, hanging him upside down of all things, giving him something to bounce on or balance and pressure exercises) we did notice an improvement.

We lucked out that she worked in the county that we lived in as well as his school on the Auraria campus so she was able to do home visits and work with him at school.

He still needed more help but the problem with getting that through the school district is that they would test him one on one and I knew he would pass with flying colors.

They wouldn’t listen to me when I said that he needed to be evaluated in the classroom to see the issues that he had.

We went through a developmental pediatrician who got us approved for speech therapy that we never received because we were on the wait list for over a year.

We may still be, who knows.

We had to have him evaluated for seizures because he walked into the bathroom at school and was so zoned out that his teacher couldn’t get his attention even though she was right in front of him, hands on his shoulders, saying in name square into his face.

Children’s Hospital got us an appointment scheduled for 4 months later….

During this time, Ewan had been improving dramatically as we worked with him-speaking more, making better eye contact, etc.

When it came time for preschool, it was suggested that we get him into a special needs preschool class for four mornings out of the week.

We wouldn’t have gotten in without Kristen’s help.

Our county already made their decision and were planning on telling us he didn’t qualify until she brought the test scores that SHE had from the accurate tests they performed.

Needless to say, it was needed, he got approved and so started the most difficult year of our marriage and life as a family.

With the consistent need for daycare because we both worked, Ewan needed to be transported in the middle of the day so my husband  had to close his store almost every day.

We were both working as single parents of two boys and rarely had time together.

At his new school, he had an OT, Speech therapist, and special educator every day rotating through and it was the best thing for him.

He worked with the OT and speech therapist the most and after a while, just the OT.

Today, his speech is amazing, his eye contact is better, he still has a really hard time looking anyone in the eye, he is a little better at holding still, he is SO social I have to remind him not to talk to random people on the street, and he is brilliant.

So brilliant that every teacher and therapist that has worked with him has said that he belongs in a gifted program if not a twice gifted program-gifted program for kids with these sensory issues.

It was so hard for us to get through that year but without it, he would probably be in special ed where he doesn’t belong, because he wouldn’t be challenged in the ways he needs.

He will tell you his life story and do it with the biggest smile ever and as animated as possible. He is awesome.

It’s still hard for me to discuss his issues with people because they doubt me and first thing they say is, “Oh, does he have ADD” or “He will grow out of it.”

No. He doesn’t have ADD.

And no, he won’t grow OUT of it but he will grow to understand what he needs to deal with it. He already has.

If you don’t have a kid with these issues, you just don’t understand.

We have since flipped our lives upside down and relocated into a different school district in a different county and we couldn’t be happier.

When I walked into Ewan’s classroom to meet his new teacher, I was a ball of nerves.

I didn’t want to give her my whole speech about what was going on with Ewan and how he didn’t qualify for help because he was too smart but that it wasn’t behavioral blah blah blah.

As soon as I said “sensory issues,” she said, “Oh, my son has sensory processing disorder.”

I got choked up.

How fortunate are we that we found a new school with a new teacher who understands what Ewan’s needs are.  I had to give her a hug there and then and she has been one of our biggest supporters ever since.

She sees his needs as well as his gifts.

With her support, Ewan has been tested for the gifted program there, and we are eagerly waiting for the results.

There is still a lot that we have to go through for him, we are currently getting the paperwork in place, called a 504, so that he can get visits from the OT there as well as have the right tools in place to keep him “organized.”

Education is so important for our kids, but they seem to fight you as much as possible to help them succeed when they need a little extra help.

We would be nowhere without the help of the people at AELC. The ASK team and his teachers. They do good work there and I wouldn’t trade them for the world.

Ewan’s first day was so emotional for me, for so many reasons. It was overwhelming to get him to this point, but we made it.

We got here. And now I can breathe again…

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