The Gift of the Diagnosis

Today we had our second IEP meeting with Jake’s school.  I have read such heartbreaking stories of others’ anxiety about these meetings.  How things can go so poorly, misunderstandings can happen, people don’t see eye to eye, and stress rules.  It just is so different at our school and I am so thankful.  I’ve also read some other stories like ours.  We are those people with the amazing team who love our son, who get him, support him, love him, and listen to us.

I cannot believe what a gift this autism diagnosis has been to me.  One year ago, I was so worried about Jake.  I was so scared of kindergarten, but I was even more scared of more days of him being home.  I didn’t know if I should hold him back a year, or put him in school.  I felt selfish because I didn’t know how to handle him and I needed help.  I felt hopeless because it was as though my relationship with Jake was based on rules, punishments, and not getting anywhere.  Meltdowns were violent, heartbreaking, long-lasting, and often.  I didn’t know if he was autistic or not, I didn’t know what that meant, I didn’t know what I was doing.  I did know I needed help.

Now he is so successful.  He is so happy.  He rarely has a big meltdown.  He knows how to calm himself down when he is upset, and I know how to help him.  Jake can articulate what he needs and how he is feeling, and I know enough to listen.  He is doing so well.  I am doing so much better.  I am able to stay calm when I talk to him.  I am able to separate discipline and support, punishments that are important and effective and when all he really needs is time and help cooling off.

What a window.

Being officially autistic has given Jake such opportunities.  He is pulled out of the kindergarten class with a small group for learning assistance twice a week.  He is pulled out with another group for speech and language in social situations support once a week.  He gets one on one time with his behavior consultant twice a week at school and twice a week at home.  There are two educational assistants in his class who listen to him, support him, prep him for transitions, and make his day run smoothly.  And of course, his teacher is incredible.  She has encouraged him and listened to him.  She has directed all of this.  She is amazing.  We are so, so blessed.

I know that there are other kids who have similar needs and need support in similar areas.  But our diagnosis has given us access to so much extra support.  There are times I wish they had a similar diagnosis so they could have all the good that we have too.

There are days I don’t know why Jake has to deal with this.  I don’t know why this happened to my baby, to our family.  Days like today, I don’t know why it happened but I am thankful.  How complicated.  I want to share this blessing.  I want to share.

I am prayerful.  I believe that God gives to us with responsibility.  We are stewards of His blessings.  Today I am resting in relief, soaking in the joy that came from this meeting with the people who make up our team.  I am praying for direction, for keys to what to do in the future.

I do know that my desire to focus on the positive, my attitude about Jake being autistic, has been strengthened.  There is nothing in the DSM-III, DSM-IV, or DSM-V that says autistic kids are anything less than incredible.  Like Temple Grandin said, “Just different.”  And he’s such a cute little kid.

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