Monday, 11 November 2013

ADHD. SPD. Been there. Done that. Still doing it.

 Thanks so much for the lovely comments, support and encouragement on my last post about how we are approaching ADHD and SPD in our house. It’s really lovely. I don’t think I’m anything special in terms of what I do as a mother, or the work I do to help my son. When you’re a mum, you do what you have to in order to help your child succeed. I just hope that by sharing some of our experiences, it might help other parents in a similar situation!

This is a follow on from my last post – about the other half or our journey. Beyond diet! (There’s no reason whatsoever for this next photo other than it’s one of my faves of J as a baby - it makes me smile when I see it!).

A bucket of baby

So diet really helped (and 3+ years on is still very helpful). But J still wasn’t quite settled. I used to see other Mums walking down the street with their little one toddling along next to them, no problems. Or going into the shops, and buying what they wanted and leaving without a single dirty look from the shop owner, or tantrum or scream. It used to make me so sad and upset that I couldn’t do those things with my boy. Shopping was awful. I had to avoid certain shops because they made him crazy. I copped the “bad mother” looks so often, it was awful. I really felt like I must have been a terrible mother who couldn’t manage her child. It was tough.  I even had one doctor tell me that my parenting style was lacking and I should consider parenting programs. That was a blow to the self esteem. I felt like I was doing my best but still floundering. It was very tough. My mum was very supportive (and still is) and encouraged me to keep looking for answers.

Our child health nurse however was fantastic and supportive. I was seeing her for Lulu’s well baby checks and she asked about how J was going. I probably looked a frazzled mess with my constant “J, sit down! J don’t climb the cupboard! J, please just play with the toys for 5 minutes! J don’t touch the stethoscope! J, you’re going to fall off there! J, I’m trying to talk to the nurse!!”. Poured out the big long story and walked out with a referral to a child psychologist. This ended up in a discussion about SPD, filling out a questionnaire (which was eye opening in itself as to how well it depicted my child!) and a referral to an Occupational Therapist (OT). Life.Changing.

We’ve been seeing our OT since J was 3. She is amazing. She has given us strategies on how to help J cope when things are overwhelming, how to help him settle at night, what works to calm him. It’s been amazing. Some of these things – like therapressure brushing seem odd. Ok feel free to think I’m a weirdo now, but yes I brush my child’s skin (with a specially designed brush). For kids like J, deep pressure brushing activates the dopamine in his brain and helps calm him. It feels horrid to me when I’ve tried it on myself, but it’s bliss to him. At one point I had to brush him every hour for 3 weeks. That was tough. But now it’s only if he needs it. Sometimes he brushes himself when he’s in need of calming.

The hammock is also magical. The OT describes it as a 10 out of 10 in terms of dopamine producing. We have the hammock set up so J can climb in and shut out the world, and we do really big swings for about 10 minutes. I usually know when to stop swinging him because he’s stopped making noises and is sitting still. It’s incredible how well it works. I try to do hammock time every day before school so J’s day starts off right. If I don’t manage hammock time (school mornings are hectic!), then I at least try to use the therapressure brush or at the very least joint compressions. That involves putting pressure on the joints, which somehow calms him. The OT taught me how to do it properly and it’s a very effective strategy when we are out somehow and I don’t have access to the hammock/therapressure brush. (Here’s a pic showing how we set up our hammock – and link to where the pic is from for more info).

hammock set up

My daughter (who is nearly 3 and a half) does not display as many of these behaviours as my son. Despite that, I still plan to take her to the OT for an assessment. Just to see if there is anything that we should be working on – to give her the best possible start before big school. There is a local school around here who has an OT assess every child in Kindergarten. I think that is such a fabulous thing – as OT can help with so many areas (from handwriting, fine motor skills, to bigger issues like SPD, ADHD, ASD).

New hats

The OT is also the one who suggested we try Cogmed – a working memory program. It was very expensive ($1500) and very time intensive (a session every for 5 weeks). But it has really helped. I wrote a review on the program that goes into more depth about it – you can find it here.

There’s so much I could talk about and go into about OT, but as this post is getting long as it is, suffice to say our OT has been magical in our lives. She has helped with managing life at home, as well as the transition to big school this year (which was a massive concern for me, but J has exceeded my expectations and settled very well!). If you have any concerns about your child, I’d highly recommend seeing a Paediatric OT to see if they can help.

Just a couple of other easy things we do at home/school – that don’t require OT help – that make our lives run more smoothly My son takes a LEGO minifigure to school every day (with permission from his teacher). It’s his fidget toy. That is – times when he has to sit quietly at school and struggles to maintain attention, he can pull the toy out of his pocket and play with it. It is small enough not to distract other children, but interesting (to J!) enough to keep his attention and keep him sitting still and quiet. This works beautifully for school assemblies (which often run for an hour or so) or for News time in class. He also has a soft silicon robot "chew toy" (similar to this) for when he feels the need to chew on things to calm himself. We don't use that at school though - more at home. It helps when he's a bit overwhelmed (otherwise he chews on his shirt or hands).

LEGO (especially Star Wars) is his special interest subject – some might say obsession! He usually has one thing that he fixates on for a long time (last was firetrucks, and that was for nearly 2 years). So I figure I’m pretty safe making him quilts to suit his current special interest.

Fireman quilt for JLEGO star Wars quilt

I also made J a weighted lap bag. It weighs a few kilos and it sits across his lap when he has to sit down and work. Again – it’s something about the pressure and the weight that helps him with focus. He keeps it under his desk and pulls it straight out onto his lap when working, then puts it back under his desk when done. Again – no distraction for other children. He also has a weighted blanket that we use at night times when he is very unsettled. It is very heavy and I just put it on him until he falls asleep then I remove it. I made it to the specifications given to me by the OT (certain weight to suit him etc).

One thing J LOVES is visual cues. He is a very visual child and visual cues help him a lot. His teacher uses signs in class sometimes to help him know what he needs to do. If I tell him to stop when he’s doing something, I put my hand up as well so he gets the verbal and visual cues to stop.  I read something fascinating in a book about visual-spatial learners (thanks Jane!) that for children like this, when they think it’s in pictures. So when I say something to J like “Don’t put that coin in your mouth!” (taken from a real life example!), his brain pictures putting a coin in his mouth – because really, how would you picture NOT putting it in your mouth?! It used to baffle us when he was younger that when we said “Don’t do something” he would always do the very thing we didn’t want him to do! We had to learn to reword our instructions. “Put the coin on the bench please” worked much better than “Don’t put it in your mouth”. I know that sounds silly – but it works for us.

Further from the visual cues, I have made a chart for him so he knows what he needs to do in the morning. That works so well. The first day I put it on the fridge, he was so excited to do what he needed to do just so he could tick it off! Now he’s asking for another chart for after school too. It’s very simple – I just made it in Word, with the instructions as well as a picture so he can see at a glance what he needs to do next.

Morning time Chart

This is a lot of talk about what I do for J. But I should add, there’s a part in here that is to do with me as a parent. I just have to accept that I have to do extra things for my kid. If there’s a party on, I need to be prepared to supply foods, and watch him like a hawk to make sure he doesn’t eat anything he shouldn’t (though he is getting so much better about that!). I have to accept that he can’t do things that are considered “normal” by others – like going to the cinema. That is way too overwhelming for him, so we just don’t do it. Ditto with school dances where they have strobe lights. We just don’t go.  My kids have never had a Happy Meal at McDonalds (no big loss I say! Though sometimes I wish we could just whizz through the drive thru and pick up a meal so I don’t have to cook!). So yeah a big part of it I guess is my attitude too. Some days are harder than others. :)

I am Happy

All these little strategies and coping mechanisms make our days go a lot more smoothly. I feel like a calmer, less frazzled mum these days. He feels like a successful, happy 6 year old boy. I just found this note the other day that he wrote by himself (no prompting, honest!). Totally made my day and validated all this work we’ve been doing. He is happy. And that makes me happy.


  1. My BFF's daughter has many problems. When she was younger, she used the weighted blanket, and also had a weighted vest that helped. As she has gotten older, she has learned how to manage many of the problems herself, and doesn't use these things now. She will always have problems, but, each year, they learn new and better ways to cope. My BFF has a HUGE notebook that she takes to each doctors appts. The notebook has everything that they have ever done, good and bad, to help. One doc told my BFF that her notebook has much more info on her daughter than all of her medical records. It comes in most handy when they are sent to a new specialist. I didn't even mention that my BFF is dyslexic.

  2. So great to hear of all the things you do.....great suggestions as well, so yes very helpful!!
    As you know we have already had a diagnosis for my eldest, but now are considering my other two boys, sensory, ADHD and dyslexia......and now my little girl who already is having language therapy and is quite literal, is also looking very much like Aspergers.

    We just had the needs accessor here today, and trying to explain all the things we have to do day in day out to keep the peace, is overwhelming when written down on paper......but as you say, you do what you got to do! xxx

  3. Such a great report, I try and tell school staff that "don't run" should be replaced with "walk" but your explaination is spot on, so I shall use that

  4. That last little note just made me all weepy! Your gorgeous boy is happy despite all the challenges he faces and I'm pretty sure that's because he has such an awesome mum!

  5. It sounds like you are doing such a fab job Kirsty, and thank goodness you have so many people and places to turn for help and advice. Being a mum is the hardest job in the world (I've got a nearly 2 year old and a 4 year old) but it is also the most rewarding isn't it! Stay strong, I think you are amazing!

  6. I think I need a new OT! Yours sounds fantastic, I suspect ours is not! I will have to try rewording and see what happens.

  7. You are an amazing Mom and J ~ just as amazing!

  8. Deep pressure. ✓
    Swinging. ✓
    Joint compressions. ✓
    Brushing. ✓
    Chew tube. ✓(this was a life saver for us!)

    I so enjoy reading what you are doing. It brings back memories of the things I did with my Mitchell. =)

  9. My 6 year old also has ADHD and SPD along with Autism, OCD and Anxiety disorder. We're doing similar things here with regard to therapies. A big help for her with reguard a to fidgeting at school has been gum!

    Thank you for sharing your story. It is nice to be reminded that we're not alone facing the idiosyncrasies that make our kiddos so incredibly special!

  10. And yet you can still produce all these beautiful paper pieced patterns and projects! You are Wonder Woman!!

  11. I did a lot of these things with my son when they were brand new and the OT's were just learning themselves, It saved our lives! My son is now 25, and though he is still handicapped, he has held the same job for 5 years, has a lot of friends. What I find the most gratifying is that he has a number of non-handicapped friends. Why? Because he's kind and giving and fun to hang around with.

  12. i enjoyed your fun pics!! The bucket must have been pretty big or J was pretty small!!

  13. You're doing such a fabulous job of describing all this for us! It really helps me to understand more about children like your son, thank you.

  14. Thank you for sharing this. As a teacher turned stay-at-home mom, I strongly believe it is great to have reminders that all children are different. Even with the very best teachers and parents, it requires a good deal of ingenuity, effort, experience, and patience to determine how to meet a child's needs.


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