Monday, 4 November 2013

ADHD. SPD. Been there. Done that.

 Still not much sewing happening here (none in fact!) but I’m hoping to be on the mend soon and back to normal. So instead of the usual sewing related post here, thought I’d share one that I’ve been thinking about for awhile. There was lots of interest (and some great follow up conversations) on my previous posts (here and here) on our little family’s journey with ADHD and SPD. Thought I would share a bit more about what we’ve tried and what’s worked and what hasn’t. I wrote this post and it was massively long so I have broken it up a bit and just doing this post focusing on how diet has helped my J. I’ve also popped in a couple of pics to break up all the text (IG/old ones as I don’t like to use current pics of my kids on my blog).

One of the main reasons this has been on my mind of late is we just had our last appointment with the paediatrician (specialist doctor in Australia, not your average GP). Yep our last – barring any crazy hiccups happening. The paediatrician is so pleased with how my boy is doing, that he doesn’t feel there’s any more he can offer at this point in time. There were major happy dances and high fives happening in my head when the paed said this! He has been wanting me to trial my son J (who just turned 6) on medication, but I really don’t feel that’s the right choice for us at this time. So to have the paediatrician say basically keep doing what we’re doing because it’s working? Well I pretty much heard the heavens open and angels singing choruses of Hallelujahs. Mum (my biggest supporter) and I took the kids out for morning tea to celebrate. We know how to live it up.

So some background. J was diagnosed with SPD (Sensory Processing Disorder) at age 3, and ADHD has been a contender pretty much since then, but officially diagnosed at the beginning of this year (once he started school). Our OT has also said that he has executive dysfunction and  ASD (Autism Spectrum Disorder) traits but not enough for a diagnosis.

It has been a long journey. Reallllllly long. And tough. And expensive. And it’s ongoing. But it is SO worth it.
K and J

We started down our path when J was 18 months old. That was kind of breaking point. He was SUCH a busy kid. I would say he literally never sat down and that’s not much of an exaggeration. Nothing held his focus. Oh and the climbing!! Once I caught him sitting on top of the stove, and he’d just turned it on – no harm done fortunately. That was the time I dared to go to the bathroom without taking him with me. Our house was like Fort Knox with babyproofing everywhere to try to keep him safe. It took two adults to supervise him if he was out in the backyard (twice he was out there just with his dad and took off over a 6 foot fence at age 2), or if we went to the shops. I was one of those mums with my kid on a harness. Got weird looks and laughter, but you know what? My kid was safe and that’s what mattered.

But it got worse than just the busy-ness. He couldn’t sleep. He’d wake numerous times at night then get up super early in the morning. He stopped making eye contact. His speech was delayed. He used to lick weird things – the floor, chairs, trees. Then there was the problem with certain noises. The lawnmower, the blender, the vaccuum. Those kinds of noises used to make J bang his head on the floor until he had bruises on his forehead. It was awful. I read so many parenting books and they all said “All children have tantrums but they will never go so far as to hurt themselves”. Well my kid’s bruised forehead said otherwise.

I’ve been around kids my entire life – been the babysitter, taught Sunday school, worked as a nanny, studied Primary Education at uni (yep I’m a teacher). But this was beyond my scope of experience. I had talked to doctors and they told me that he was just at the “busy end of the scale” and one told me I should take a parenting course as obviously my parenting style was not working. It was my mum (who is a nurse) who gently said I think there’s something else going on here – this is not normal behaviour, let’s look into it ourselves. Long story short, that’s when we started with diet. (For those interested, the Failsafe website is very interesting – that was our starting point).

J practicing writing

As a kid I reacted to preservatives and colourings and was considered hyperactive. So Mum suggested I start there with my boy. So we did. It wasn’t just a case of changing diet for a few days and seeing – we did it over a few weeks – just removing preservatives etc. And it helped. But it wasn’t enough. We saw a GP who was also a naturopath and she had us do an elimination diet. Holy horrible 3 weeks Batman. That was TOUGH. The GP didn’t mention that J might experience withdrawals – or how bad they might be. That first week J was off the charts awful. I felt like I was losing my mind. But we got through it. Then we had to reintroduce some of the foods. It only took two days to discover that dairy and gluten were the culprits for my boy (in addition to additives).

Interesting little side note… We have since learned that with people with food intolerances, it’s often the food you most crave that causes the most harm. Guess what J’s favourite foods were? Bread and milk. At the shops, he would beg me for a piece of bread – not the lollies lining the checkouts, but a piece of bread. So it was really hard to say no when he was pleading for his favourite foods (which are typically considered healthy!). But we persisted. We changed the diet for all of us. I was pregnant with Lulu at the time and had terrible morning sickness. I found the change in diet really helped me with that too which was a bonus!

J in his Commander mask

3 years or so on and we are still gluten, dairy and additive free. We are not celiac – just gluten intolerant. It affects us in different ways. For me – it makes me irrationally cranky (don’t even look at me the wrong way! Winking smile ),fatigued and gives me terrible stomach pains and really bad brain fog. For J – his behaviour is off the charts – he stops making eye contact, can’t focus, can’t sleep, has major meltdowns, his little legs are constantly in motion, even when he’s asleep! All of these symptoms disappear/reduce when he is on the diet however. That’s proof enough for me.

I will say too – I was really pleased when we first started seeing the paediatrician and he didn’t poohoo the diet idea. In fact he was very encouraging about it and totally agreed that gluten and dairy were issues for J and he was better off without them (ditto for the rest of the family as apparently it’s often hereditary). Our GP has given J supplements that also help (probiotics, zinc, magnesium, Activated B complex) and we make sure he gets all his dietary requirements from other foods (we’ve even seen a dietician to make sure it’s all ok).

Cubby house

Diet is probably one of THE biggest things we’ve done that helps J. I’ve lost count of the times people have said “Oh that must be so hard” or “I could never give up cheese/milk/gluten/whatever”. I just think when it comes to your kids, you do what you have to do to give them the best possible chance. And yeah it is hard, but it’s worth it, so we make it work. Please note though, I’m not saying that diet is a cure-all for ADHD and SPD. Just that in our experience, it helps. Diet, along with OT work and other strategies all combine to make a big difference for my boy. We may need to discuss medication again at some point in the future, but not just yet.

Having written all this, I don’t know how interesting it will be to most people who read my blog. I’ve debated even publishing it. But maybe it might help one parent who’s going through some of what we’ve been through. If there’s interest, I can post about the other half of the journey – the OT work etc that we’ve done as that has been a big component in helping our family. Like I said – it’s been a journey. No one thing in isolation has worked, but a combination of them has made a massive difference.

And hey, if you made it this far – thanks! I’m hoping to be back on the sewing wagon soon (reallllly missing sewing).

Sewing each day keeps the crazy away mini

37 comments:

  1. It's a lovely view into your family and commitment to your kids. I can't identify with you because I havent experienced it, but from what you've written it sounds like he's one lucky kid that has the exact right mom. :)

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  2. Hola! Mi hijo tiene 23 años. Es ADHD diagnosticado a los 7 años. El problema termina con la escuela secundaria o elementary school. Este año descubrimos con el ALCAT TEST que es intolerante al gluten, a los conservantes, los colorantes rojos y el azúcar. Ha mejorado un montón. Suerte!

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  3. Thanks for sharing this intimate peek into your family life, Kristy. You are a wonderful mommy. Praying for you and yours.

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  4. Thank you, Kristy. You're an inspiration in so many ways. If you don't mind sharing the other piece of your journey with J, it would be appreciated so much. Blessings to you and yours-

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    1. Thanks for your nice comment - I'll post a bit more about the other side of the journey soon :)

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  5. Kristy you have done a wonderful job advocating and finding ways to deal with the issues presented. I do know how you feel and wanted to cheer your braveness for sharing. Sometimes it is such a lonely journey. Knowing you are not alone on such a challenging path is so reassuring. XX

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  6. You're an awesome mummy kristy and j is so lucky to have you advocating for him! Having met him at age 4 there is no way I would imagine the toddler you describe, he is a calm, together, sweet boy.

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  7. Good for you! Not everyone would realize that diet could make such a big difference holistically, but I really think that it does. I've been gluten-free for over nine months now and I can't believe how much that one change has improved my overall health (I'm also intolerant, non-celiac)--mind, body, and digestive system. ;) Taking the steps to adhere to a more restrictive diet isn't easy either, but your whole family should feel proud for that accomplishment!

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  8. you are such a loving, caring mom and J (and Lu!) are so lucky they have you :) Hope you are back in sewing action soon or at least feeling back to your usual self!! sometimes a break is needed and necessary to get those batteries recharged! and if i know you, you have probably been pattern scheming a bit.

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  9. Even though my kids don't have such problem it's good to know there are some out there. It makes me appreciate our usual routine. Stay strong it seems you are on the right track.

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  10. I've just read this and your two earlier posts, Kristy, and I completely agree with Susan. Your son is so lucky to have you. I'm glad that you've found ways to manage this that suit your family but I'm completely awed by the work you've had to put into it and I'm sure this post will be really helpful to others in a similar situation. Hope you're back on the sewing wagon soon or at least find some time to relax x

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  11. Great post Kristy! I am always interested in hearing how others have dealt with these kinds of issues, with 2 on the spectrum I find others experiences helpful and encouraging! You are a great mum!

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  12. Great post. Though we aren't affected in any way, it's always interesting to get to know blogging friends a little more (away from the sewing machine!). Thanks for sharing.

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  13. Thanks for sharing, Kristy. It was very interesting to read about your journey with your son, since life is not just about quilting. Although I do agree with your statement above that "Sewing keeps the crazy away"!

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  14. Hang in there Kristy ! You are such a good mum . My boy wrote his first WACE exam today ( yr 12) he too has been diagnosed with ADD and Executive Functioning Disorder and has dysgraphia . He was a climber too as a child ......oh yes he was ! You have been very focused with the diet issue and you've done well . Good luck with it all .

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  15. I'm glad you are blogging about this. Quilting really is a worldwide community. We not only share our designs and our triumphs but we share our struggles as well. Here's a hug :-)

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  16. You are such an amazing mom :)

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  17. We have had similar struggles - my grandson is allergic to gluten, peanuts, tree nuts and soy. I must admit I am so glad he isn't allergic to dairy! Soy has been the hardest as it is in everything here in the states, but I agree - you do what you need to for your kid to have the best health!

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  18. Thanks for sharing this, although my own kids don't have these issues, a lot of the ones I work with do and it is really interesting to hear your solutions. Don't be afraid to share, those who are not interested will just skip to the next blog. Well done you for coping and for sharing.x

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  19. I applaud you and everything you are doing. I find that when a blogger that I follow opens up and shares part of their private world with me it makes my blogging experience that much richer. It is so nice to know that you are real and dealing with real issues like we all are and even though it would be fantastic we all are not living in a fantasy world. Thanks for sharing!!

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    1. Thanks for reading and leaving a comment :) It can be tough to do posts like this that aren't all shiny and happy and sewing related, but glad to know there is interest!

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  20. Over 40 years ago a friend began treating her ADHD daughter with diet (no preservatives and artificial colorings, ets.) and realized great results. She had tried medication but when the girl wound up in a fetal position under the dining room table, she decided to go the holistic route. Later when my son began acting "hyper" I also modified his diet. I didn't have to go so far as you did, but bravo for finding what works and making it work for your son! And thanks for sharing!

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    1. It is tough isn't it! And so individual to each child as to what will work and what won't. Diet can definitely be a tough one but well worth looking into! So glad you found what worked for your son!

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  21. When we started having 'hyper' problems with my oldest son, my SIL mentioned food coloring and additives to me. I started reading the side of the packages, and we cut way back on food colorings, and most additives (it's really hard to do that, too, so I totally understand what you are going thru). He'd had dairy problems as a small child, but, had grown out of that. We'd never heard of gluten until a few years ago. He is an adult now, and loves those foods. He's on meds now (for less than a year), and it helps. I'll mention those to him, but, I kinda doubt he'll even try to see if it would help to not eat them. Some things are easier to learn new behaviors with when they are small, not grown. Hang in there. I know you are helping others, even if they don't say anything.

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  22. It is so fascinating how different we all are and how different things affect us. Thank you for sharing this with us all. I'm so glad you've found things that help and that your son has such wonderful, supportive, loving parents.

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  23. It's always a combination of things that seems to be the best - keep working your magic Kristy!

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  24. I'm so happy there are moms like you. I don't know how my mom lived thru my childhood. I was soooo hyper, I also licked everything and was sick all the time. I could get out of the house(child proofed and locked) by age 1, and my mom found me on top of the fridge at age 15 months. My child has many symptoms of Autism also and it is emotionally stressful. She is 18 years old and we are still working on going gluten free. I always give up when it gets to hard. Well you have inspired me to focus on her health above giving in to her wants. Thank you!

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    1. It is -really- hard some days. Some days, more than others! But hang in there Kristenn! Once you get the hang of it and get used to what you can/can't have, it's not so bad. Happy to chat if you need any encouragement or ideas!

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  25. I love to read the "real" posts from bloggers. It's nice to know that your house isn't located under rainbow, with little fairies coming in and cleaning for you, and well behaved, perfect children sitting quietly at the dinner table. I like to see all the sides of the bloggers I read, and to know your struggles and triumphs. It's very brave to share - thank you!

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  26. Thanks for sharing Kristy :) You are a beautiful mummy and friend xx

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  27. I am SO glad you shared. I had forgotten that you are walking the same path I walked. Okay, not the same, but similar. My 17 year old son was diagnosed with SPD when he was 7. I wish we could have caught it earlier, but we caught it and that what counts. OT was a life saver for us. He is a well adjusted young man and doing very, very well. =)

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  28. Kristy, you are such a great mom. I totally agree with you -- we do what we have to do for our kids, even when it's tough. It's all so worth it. Praying that all continues to go well for you and J. High five!

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  29. Hi Kristy, My aunt is a follower of your blog and she sent me a link to this post and thought it might be helpful for our oldest son who is displaying a few autistic tendencies and has a speech delay. I have added your blog to my favorites and would like to hear the rest of your journey! Thanks for sharing this story with us. ASD seems to affect so many people these days. I am sure everyone would agree that tips and tricks of what worked are greatly appreciated. Thanks! Sara

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    1. Thanks for your nice comment Sara! I will post a bit more about some of the OT and other strategies we use soon! Glad to hear that it's been helpful!

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  30. Thanks for sharing this, I'm sure it will help someone. Diet is often overlooked these days in the UK. I had problems and I found out I was caffeine intolerant....but the doctor had no interest what so ever!

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  31. Fascinating post Kristy. I am lucky enough not to have had to deal with issues like this so can only admire the determination and dedication that you have displayed in coping so far.

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