Thursday, May 13, 2010

End of an era

Since our appt with the DAN doctor has confirmed Alex's SPD diagnosis, I have really tried to keep him on a sensory diet. Meaning every day before school (he goes to PM kg) he either has gymnastics or OT and on the days he does not I make sure he swings, jumps on the trampoline, gets to play at a playground, or we walk to school. In addition, he does Therapeutic Listening every day. He is a sensory seeker so he needs this input EVERY. DAY. If he doesn't get the input he is generally a mess at school and at home and does his sensory seeking jumping which looks pretty similar to autistic stimming.

To be honest, I am kind of sick of making sure he gets his input every day. I am on constant alert - did we do enough input today? And I am wondering what will happen next year when he goes to 1st grade and doesn't have all morning to get in his sensory stimulation. My fear is he will get it one way or another - either by being disruptive in class or sensory seeking alone at recess or both. I don't know how his sensory needs are going to fit into a day in public school even with an IEP.

Also.....THE CAFETERIA (cue up horror movie music)is bound to cause problems for him. Although mostly a sensory seeker, Alex is an avoider when it comes to smells. He is a kid who can't tolerate the smell in IHOP (which I think smells pretty good...hello? pancakes, what's not to like?!) The elementary school cafeteria is noxious to even NT kids' noses. I am not sure how he will handle it. I can't imagine he will make a lot of friends by gagging and dry heaving at the table.

Alas, his days as a "little kid" are rapidly coming to a close. He has had 2.5 years of special ed preschool and 2 years of kindergarten. He has come a LONG way from that first day I put him on the special ed bus when he was completely non-verbal and did not appear to understand anything that was said to him. I remember that day vividly and how scared I was for him and for me (putting him on a special ed bus made it official - I was the mother of a special needs child!) I cried my heart out that day and I am in awe of my little boy and how much progress he has made. He has worked harder than any young child should have to.

Next year he will be on his own more than ever. I meet with his special ed teacher next month and I will share my concerns. Hopefully, we can come up with some things to try. However, this will be a whole new world for him. I am terrified for him and for me again. I am also hopeful that all his hard work has paid off and he will be able to attend first grade with NT kids and thrive.


  1. My son was recently diagnosed with SPD and is also sensory seeking (I have the blog The Chronicles of Mr C). We just did the Wilbarger Brushing Protocol and have had great results. It's like it fulfulls the sensory stimulation he is seeking.

    In fact the OT that recommended it said that she had one child that didn't talk at all speak in sentences after the first week. You do it every 90 minutes-2 hours for 1-2 weeks under the supervision of an OT. Have you tried this yet?? It's supposed to organize the nervous system.

    We did it for one week and my son is sleeping immensely better, talking in more complex sentences, listening, and following directions better. Just thought I would share it with you. It sounds like your son has very similar symptoms to my son's. My son also has strange language that you can't quite put your finger on, but isn't quite right and not autism.

  2. how well I know what you mean about making sure that our special needs kiddos get all they need
    Change is always scare -
    Hopefully Alex will keep exceeding your expectations

  3. Alex has surprised you all along the way, and 1st grade will be no different. He will thrive and even excel.

    Charlotte's school has a program for sensory kids called "Romp & Stomp." It's 5 minutes at the very start of the day and it's stretching, deep pressure, jumping kind of activities to warm up their day. I wonder if you could inquire if they have something like that at Alex's school.

    As for the cafeteria, I dread it but not for smell reasons. I just remember the cafeteria being a treacherous social nightmare. Ugh.

  4. Rachel, we have done some brushing in the past, maybe it is time to revisit it??

    Goodfountain, "Romp and Stomp" sounds fantastic. I don't think our school has it but maybe I can suggest they start it?? And yes, the cafeteria could be a social nightmare, but until I figure out how to help him deal with the smells, he won't even be able to begin to deal with the social aspect. I know someone whose kid eats in the counselor's office every day. I'm sure Alex could do that, but that just sets him apart even more, you know?? Sigh...

  5. My son is a seeker too and I struggled at first with providing him with enough input before preschool this year. In the beginning I thought we could wake up early and cram in his needed therapies before school. We even were tardy a bunch of times because I was so stressed about him getting enough input to deal with the day.

    But I found that a few heavy work, calming activities were better than rushing around and arriving late. We started doing the rest of his therapies in the early evening before dinner and were happy to see their effects are long lasting and carry over to the next day (esp. proprioceptive).

    Making a plan with his Sped teacher is a great idea for the transition to full day. Does his school have summer school? Can he visit the cafeteria for lunch once a week over the summer to get used to it? If not, maybe visit a busy food court and talk about how it's going to be similar in the cafeteria? I'm sure he can do it!

    Romp and Stomp sounds awesome!!