Hi there, My son was recently diagnosed with SPD and we have begun OT. I am trying still to get over the guilt of not trusting my instincts earlier and getting him evaluated when he was younger. He recently turned seven and is getting the help he needs now. He is an amazing boy, very smart, academically advanced, but struggles socially due to needing to pace in a room when things get too busy or emotionally reacts with tears when asked to make split decisions or shift gears in school quickly. Transitions are his downfall. So, while he academically excels, the kids are not so kind and it's a small small school. It breaks my heart to watch him isolated so much from his classmates because they think he is a baby or weird.

I still struggle with feeling I have let him down watching him struggle these past few years ignoring that little voice telling me something was different. I trusted doctors saying he would outgrow his pacing and arm flailing and sensitivities. I finally ignored them and got him evaluated but I still cry over feeling I failed him as a mom through pre school and kindergarten.

That's my story. I have this wonderful boy who never ceases to amaze me. He is articulate, imaginative and so full of love and curiosity for all things scientific.

So, is there anyone out there who:
1) lives in Twin Cities and knows of a parent support group or play group with boys 6-9 years old who are struggling or have struggled with SPD and the school challenges

2) once their children were evaluated and started going through OT, have found that they too (the parent) struggle with SPD and how have you dealt with that?

Thanks for listening. I have been wanting to write but afraid to do it.

First off, *hug* You're not alone at all,and you made the right choice in getting your boy evaluated. :3 There's still plenty of time for him to develop the needed skills and to get friends. 7 is still a young age.

As for the transitions, maybe you can get an IEP in place for him that will allow him 5 minutes of cool off time in between transitions, like class to playground etc?

I'm 19 and I pace around a lot, I always thought it was normal While on the phone especially since I don't care for phones much. Hehe.

as for 2) since I can answer that, a lot of parents have found out they're SPD by getting their child diagnosed. It's not uncommon, and there's a possible genetic link, so it'd make sense.

Welcome! :3

Hi, Kerry, welcome! Big HUGS! Guilt is part of being a mom. I struggle with it all the time! I could've written your post!!

My older son was diagnosed "later," just a couple of months before he turned 7, in 1st grade. I always just thought he was slow to warm up to new situations and on the shy side. I was very shy as a child. But in Kindy, his teacher came to us with concerns about his parallel playing and not interacting with other kids. He was evaluated for autism but didn't fit enough of the criteria to be diagnosed with it. After months and months, we finally got the SPD diagnosis in 1st grade.

Your son sounds a lot like my son at that age. He has a very difficult time with transitions, gets overwhelmed easily in busy environments, emotionally sensitive (cries easily), and has a very hard time connecting socially with other kids. His school set up IEP meetings starting in 1st grade to find ways to help him. We're lucky that we have an OT who floats between the different schools in our district. They set up motor breaks for him throughout the school day. First thing in the morning, he and an aide would go out to the swings on the playground and swing for 15 minutes. This served a dual purpose--the swinging would help calm his body so that he'd be ready to sit and do his work, and it got him out of the classroom during the hectic time when all the students are coming in from their buses and putting away backpacks. That was an overwhelming period for him and often caused meltdowns if he was in the classroom. Then he also had 1-2 other in-school motor breaks depending on what was going on that day. They brought him to the OT room to jump on mini-trampoline, punch air-filled punching bag, use those sitting scooter things, or do other heavy muscle work. These lasted just 5-10 minutes, enough to calm his body so he could focus on his work in the classroom. Then an aide would take him to the library at the end of the day for a story book, again to get him out of the classroom while kids were getting coats and backpacks ready to go home. Another time that was overwhelming for him. He had these motor breaks in 1st and 2nd grade. Last year, in 3rd grade, they cut back on the OT since he was doing better and it was more detrimental having him miss things while he was out of the classroom.

He also had weekly sessions with the school social worker. She worked with him, in classroom and in her office--modeling behaviors for him, learning how to be a friend, what it means to be a friend, and other basic social skills. He's had weekly sessions with the social worker since Kindergarten and still has them now in 4th grade. We also take him to a private psychologist's office for weekly social skills sessions. One of the boys is on the autism spectrum, PDD-NOS. Not sure about the other boy. I think someone else will be joining the group next week.

So I would start talking to his school right away about getting an IEP in place for him. I'm not sure what it is available in your school district. Ask for motor breaks, which I think would help with the pacing. Ask if they have OT, but at least get him in with the school social worker or psychologist. Maybe they can start social skills sessions, if they don't have anything like that. Ask about support groups at his OT (is it a center or just an individual?). I just did a quick google and saw a Sunny Days OT place http://www.sunnydaystherapy.com/ Maybe they know of groups.

I don't live in Mpls now, but grew up in Richfield. My mom still lives in Bloomington. I visit her every summer. I'm working on getting plane tix for August this year. I'll keep my eyes and ears open for anything in the TC area.

And YES, over the last 6-9 months, the more I read and learn about SPD, the more I realize what sensory issues I have. I have yet to get diagnosed and not sure what to do once/if I get diagnosed. The resources I know about are all for kids. So until I can find something, I've been going to an exercise class once a week and a psychologist (same person my son sees). The exercise has helped me not just physically, but emotionally and mentally too. Not as jumpy in my skin. Now it's just getting motivated to go every week.

I hate phones too--they stress me out. And now that I think of it, I always pace or walk around while talking on the phone too.

I hope you'll stick around and not be too afraid to write!

I think we all experience some guilt when our child is diagnosed and we think we "should have gone sooner".... I really didn't think there was anything wrong until my son went to preschool and the teachers started to raise concerns - it was more about the environment being too much, where at home he coped fine but I remember thinking what kind of a dumb mother am I?

There are no dumb questions, we are all at different stages in our journey with SPD (and life in general!). Our children are all so unique that it takes time to work out what helps and what doesn't.

Welcome and we hope to hear from you soon!