Saturday 23 February 2013

ADHD boys don’t like cauliflower.

 That pearl of wisdom is from my 5 year old son, one night when I dared put some vegetables on his plate. Well he sure told me! In more ways than one. Suddenly I realised those times we had been at doctor’s appointments, or occupational therapy or just having discussions with my Mum… Mr 5 was listening and picking up on things. I didn’t even know he knew the term “ADHD”. Now I don’t think he knows what it means but he does know it applies to him (which quite frankly, makes me a little sad).

If you’re after an entirely quilting focused post today, feel free to skip to the next blog in your reader. This is not a quilty post (though I will end with a sewing project!). I don’t tend to post a lot of personal stuff – my blog is my happy, creative space. But I wanted to share a bit and put our story out there in case it might help other mums like me.

You know, mums who are told their child’s behaviour is a result of their bad parenting style. Mums who are told there’s nothing wrong with their kid. He’s just at the busy end of the kid scale and perhaps you need to see a psychologist to discuss your feelings of inadequacy as a parent? Those mums who get the bad looks at the shopping centre when their kid starts licking the floor or the legs of the chairs or runs out the door and onto the street while you’re frantically yellling. Yeah. Those mums. Mums like me.

This past week we’ve been given an official diagnosis by the paediatrician (specialist here in Oz, not your everyday doctor) that J has ADHD. It wasn’t a surprise. It’s been put up as a possibility since he was 3. But now it’s official. And what a relief that is. I am not a bad parent. I don’t need to change my parenting style. My child is not a naughty kid. It is a physiological problem. Even nicer to hear from a specialist is that I’m doing the right thing for my child, despite all the naysayers.

Jones the heavy platypus
Cute platypus picture to break up all the text! I know, I talk a lot! More details on this little guy further down!

My son (and in fact myself and my daughter too) is on a pretty limited diet. No gluten, dairy, preservatives, additives and for J – no brightly coloured fruits. Each of those things sends him out of his tree. He’s a nightmare. He stops making eye contact. He has toileting accidents. He can’t sleep. He does not shut up. He is beyond loud. He climbs everything in sight. He fidgets non stop. All as the result of a wrong food for his body. It’s been a long journey to get to this point where we have his diet fairly settled. Life is much easier for all of us when we avoid those foods. It’s hard. But so so so worth it.

We started seeing a paediatric occupational therapist (OT) when J was 3 (who then suggested ADHD was likely). Around that time, one paediatrician (that cost $400 for his esteemed opinion) told me J probably had ADHD and come back when he was 6 and he’d put him on medication. Not so bloody helpful. What was I meant to do for the next three years?!  Our OT however was the first person who listened to my concerns, did a complete 2 hour assessment (all play based) for J to discover his strengths and weaknesses and gave me some tools and strategies to help us cope. I cannot thank our OT enough for the difference she has made to us. Nor can I thank my mum enough for her continued support and help with all of this. She is my biggest help!

So my boy, at a whopping age 5 and a half has a few labels applied to him. ADHD. SPD (sensory processing disorder) and executive dysfunction. That’s a lot to put on a kid. So I try not to make a big deal out of it, while we work on ways to help and support him so he can achieve whatever he wants. He’s a smart kid – this stuff isn’t going to hold him back. 

But he is doing so well. I am so proud of him. He has just started school three weeks ago and received his first merit certificate the other day (for having lovely manners!). He also went to the canteen for the first time, all by himself and bought the only thing on the menu that he can eat – popcorn. He told me he asked first if it was gluten free. Then he saved some in his lunchbox to bring home for his little sister. Melted my heart.

So I want to do whatever I can to support him and help him be a success at school. Which leads me to my current sewing project.

After a parent-teacher meeting yesterday, it’s become obvious that staying in his seat, and focusing on fine motor skills (like writing), are difficult for my kidlet. So the teacher and I are working together to come up with some things that might help in class – little signs for visual cues, soft music, larger pages to practice his writing on etc. And I thought this little guy might help too.

Homework helper

Meet Jones. Well he’s called Jones for now until my son renames him. Jones is the name of J’s imaginary friend, so I thought it might apply nicely to his new platypus buddy. Jones measures about 14” long and weighs 600g (21oz). He is designed to sit on J’s lap, under the desk, while he works on tasks that are difficult for him and require concentration.

Jones the heavy platypus

I don’t fully understand how it works, but something about the weight, and pressure on joints and muscles helps the brain for kids like my boy. He has a heavy blanket (weighs a few kilos) that we put over him at night to help him relax and settle. It works. He loves it. So this little guy Jones is going to help him with his schoolwork. I hope.

I have stuffed this guy chockfull of buckwheat (after quadruple stitching all the seams!) to give a nice squishy, but heavy little helper. The pattern is by Pauline of Funky Friends Factory. And it was a breeze! The pattern was so well written and easy to follow. I made this in less than two hours. Fabric is Color Weave – which you know I jut adore. Couldn’t resist using it in the red and black for this project.
Jones 2

So the big test will be tonight when we sit down to try homework. I hope that this little guy will work his “heavy” magic and allow my boy to focus while we learn all about the letter “t”. 

If you’ve made it this far through this epic post, then thanks for reading a bit about me and my boy. If you’re a mum like me, then I just want to encourage you to go with your instinct, fight for your kid, even when people tell you you’re over the top. No one knows your child as well as you do – so keep pushing to find answers and likeminded people that will help your child reach their potential. Yay Mums. Smile

And if you have a question about anything I’ve mentioned, feel free to drop me a line. I could talk for days about this journey and what we’re doing. But I think this blog post is long enough Winking smile

52 comments:

  1. Way to go Mum! He will be just fine!

    ReplyDelete
  2. Well spoken Kristy. Thanks for sharing your story with us.The platypus is a cutie!

    ReplyDelete
  3. it sounds like you are doing all you can. My grandson is ADHD and it was quite trying at the beginning - his behavior was terrible at 2 & 3 years old. He is 12 now and is doing so much better, he does take medication which has helped and doesn't have to take near as high of a dosage as he did at first. He is learning to control himself much better the older he gets. There will be a light at the end of the tunnel one day for you and your family

    ReplyDelete
  4. Every kid in the class is going to want their own "Jones"!

    ReplyDelete
    Replies
    1. That's one of the things I'm a little concerned about - hope it doesn't cause any problems for the teacher!

      Delete
  5. Kristy, I'm in awe of you. What a fantastic mother you are. I loved parents like you when I was a teacher -- you were always the best to work with. I can't imagine all you've been through, trying to help your little guy. I admire you more than I can say. And Jones is a keeper -- I need to go check out that pattern...

    ReplyDelete
  6. My son is a little older and has calmed down a lot without medication. We have used a dry erase board for practicing handwriting. My baby also has a problem holding still. If he holds something small, it seems to help. It is a long hard road, and there are a lot of bumps, but it gets better!!

    ReplyDelete
  7. What a great post. Thank you for sharing!
    Esther F.

    ReplyDelete
  8. Well done for listening to your gut and fighting for your wee guy. Sounds like he's not letting it all hold him back though- your wee story about his trip to the canteen melted my heart :-)
    Fingers crossed that Jones does his job well.

    ReplyDelete
  9. Being a parent is hard enough job without extra challenges, I have no doubt you and J are going to deal with this together, you are blessed to have each other.

    ReplyDelete
  10. You are amazing Kristy - I hope the letter 't' went well for you guys:-) Jones is super-cute and will be a great addition to the class.

    ReplyDelete
  11. Actually I found the Labels helped my kids in themselves. They know they aren't bad or naughty or any of the other things they have been called (including little shit and complete bastard - by adults). They have ADHD and Aspergers Syndrome. My mum has diabetes and takes insulin so she can live a good life which has helped them to understand that they just have a life problem like grandma and taking ritalin, not eating skittles etc (or apples!!!) helps them like her.

    You will meet plenty of people who don't believe these things exist, be prepared. Don't be upset by them. They are ignorant. My eldest is 19 now and will always need some extra support, but will still live a full life. You are a GOOD MUM and your son is a GOOD BOY. You will be tearing your hair out sometimes, but don't let other people stop you enjoying loving him.

    ReplyDelete
  12. PS ADHD boys also don't like doing wet jubs apparently - like washing and drying up.

    ReplyDelete
  13. Of course I read to the end and found your words very moving. I'm pleased that you have found the confirmation of the "official diagnosis" a relief and hope that you will now get more help and support from people who understand (your OT sounds a gem!) and are not rude,ignorant and judgemental. It certainly looks like you've found a few of those "likeminded people" here who have made thoughtful, valuable comments. Keep fighting and I'm sure that Jones will be a great friend to you and J.

    ReplyDelete
  14. What a great post Kristy. It made me nearly cry at one point and then laugh, what a great kid to ask the tuckshop about the popcorn first! It sounds like you are an awesome mum! Also Jones is so cute I bet all the kids want one!

    ReplyDelete
  15. I absolutely read the whole thing, and congrats on your final diagnosis :) And I am one of those mums....we have just started the journey of getting my eldest ( he is 10 ) officially diagnosed for high functioning autism.
    All the cues were there from a early age and the early days at primary were tough...we nearly went down the track of diagnosing him when he was 7 but thanks to he teacher at the time, he started to blossom and things started to improve. However in the last year, he has started to regress, maybe it's all the changes in the last year, new school, new house etc. We're on the waiting list currently to see someone, that's a 4-6month wait.

    I'm looking forward to some confirmation so that we can get support and find out how we can help more in his day to day challenges....sorry about the novel, I also could go on and on and on! :)

    By the way I love the platypus idea for school, I would love to know how it works out for you :) Big hugs to you aswell as I truly know it's tough going xxx

    ReplyDelete
    Replies
    1. Ooo I totally hear you with the disruption that changes like moving house and school can make when kids on the spectrum like to have order and routine. Hopefully it will be a temporary regression with the behaviours. Just be patient and go with your back to basics gut instinct. We have just moved house in December and my second child usually comes to grief about 3-4 months after we move. So I am preparing myself.

      Delete
  16. Kristy, it sounds like you're doing an amazing job as a mum :) Some of the kids who I love to teach have ADHD, because they have such a sweet personality- and I've seen them get great GCSE grades too. Keep fighting! X

    ReplyDelete
  17. ADHD is a hard thing to live with. The more negative feedback he gets from others the more they act up. They want attention and the negative attention is the method they lean towards. Routine is another factor that helps. The diet and the OT are an excellent starting spot to gain the skills of dealing with this. Use a schedule on the fridge to show him where he goes for the day and things he needs to do to stay focused. Easy steps and more peaceful living are important for all. Good Luck. Chris

    ReplyDelete
  18. Wonderful post, Kristy and way to go! Hang in there -- you and your precious boy can do this! :)

    ReplyDelete
  19. Great post Kristy ~ and what a lot of wonderful things you're doing for your son.

    ReplyDelete
  20. * hands in air * YEAH for you!! What a wonderful and inspiring post!! Love it!
    I'm sure your son ( and family ) know how GREAT and AWESOME you are .... and now I do too!! You're a truly wonderful mum and woman!!

    ReplyDelete
    Replies
    1. Thanks for the encouragement! It's a bit journey but we are getting there :)

      Delete
  21. I can say I honestly know where you stand. As I have been standing in those same shoes for 19 years now, SO much I could say...Could fill a book with our experiences.Godd , bad, sad, helpful and not. But after all is said and done We have a huge list of diagnosis. I would love to talk to you about all this. If you would ever like to email me please feel free. But the best piece of advice I can give you is to take him to some one who does all of the battery of psychological testings for theses children. My son has been on a handful of meds since age 3 but in reality he probably needed them since he was born. After hedgein on diagnosis for years and haveing many diagnosis. Tons of school issues and IEP's and special education and many school nightmares. We finally got ouu insurance company to pay for my sons battery of tests. And although I had known in my heart for many years We did find out tha tmy son is Autistic. And most of the things that were supposed to have beeen helping him which were not should have been avoided the last 19 years. I hope all goes well with you son and for your family. As a mom I know how hard this can be on all of you. And please do not knock yourself up over things that are out of yoru control. Good parents try to love and nuture and take care of their kids the bes tthat they can. Bad parents are those that do not and turn their backs. And ignore anyone who has negative things to say about your child. The less negativity you let be in your life the better for all of you. conn_and_vans_mom(at)yahoo(dot)com

    ReplyDelete
  22. The platypus is a real cutie and you Kirsty are an incredible mum, he's a lucky little boy to have you. I can't offer any words of advice as I haven't got children but if you ever fancy sounding off or just telling us about what's going on, I think you can safely do it on this blog judging by the responses above.

    ReplyDelete
  23. When I saw a blog post from you in my email I said, " yay a Saturday post by Krisy!!" then I read the title and said, O, this is gonna be a good one!!" what a journey!! Sometimes parenting is a lot of trial and error ( just ask my oldest) and one of the best things in life is when we see our kids succeeding and learning things we have taught them. Thanks so much for sharing some of your story!! Sending you support and hugs from the other side of the world...you know I think your awesome!,!!!!

    ReplyDelete
  24. My DS is very similar, he wasn't ever diagnosed as ADHD but he had loads of the triggers and symptoms and has Asperges tendencies but my DH refused to have him properly tested.He has always been a difficult child and we've known from an early age he's different. But through trial and erro we found like you have, you manage to find a way to help them and calm them, sometimes it means they need a room on their own, sometimes a place to run around, special bed routines. We didn't find diet/avoiding foods helped very much, he's now 8.5 and much much better although we still have lots of stress. I'm not a very calm mum :( He's very intelligent and that doesn't help with school/teachers when he needs to let off steam. (one actually sellotaped him to a chair when he was 4!!! because he wouldn't stop moving) Is he left handed too ? my ds was horrendous at writing but now has improved dramatically and does cursive writing at school now, something we never imagined. A recent visit to my mum's, he woke her up at 4.30am because he couldn't see the clock and *needed* to know the time, I went out, bought him an alarm clock with glow in the dark numbers, he slept with it by his bed and was fine because he knew he could check the time and go back to sleep. Year's ago I would've shouted at him and made him sleep without one, now I know it's something he can't help and he has these *needs*...he is obsessed with numbers of any kind, has been for years and is very talented with maths...it's madness to see him know division etc before he's even been taught it.
    Thanks for a great post

    ReplyDelete
    Replies
    1. Well done for being such an intuitive parent Pippa.

      Delete
    2. Your son sounds a LOT like my boy, who was daignosed with ASD (Aspergers) last year. I had an incling since he was 3, after a GP mentioned it off-handedly when we went for a chest infection and he spent the appointment hiding under her desk. When I learned more about it, so much of his behaviour made sense - the need for routines and the making of strange routines to help him get through daily life that caused huge issues when they were interrupted.

      My DH also was very against having him tested, but when the teachers started having problems with him, I managed to convince DH that we needed to see a social worker, without mentioning Aspergers at all, and just see what she had to say. Of course she immediately identified Aspergers as being a probable cause for his behaviours, and with that, I finally had agreement from DH to have him tested. We haven't looked back since, and he is now getting the help he needs in a special Austism Intervention Program, which will hopefully allow him to integrate better into mainstream school next year. And you know what, DH is very much on board now, and is often the first to come up with useful suggestions to help him - a long way from the denial he was in a year ago!

      Sorry for the long reply, but I urge you to have your son tested. Without understanding he will be judged, with a diagnosis he can be helped. I know it's not easy as yuou feel torn between your DH and your child when they can't agree, but your child needs you most right now.

      And on the clock watching - my boy cannot sleep without knowing the time. For a long while we didn't realise he was staying awake all night watching the numbers go up, but we found the perfect solution with a clock that has a light, so you can't see the numbers unless you push the button. That way the numbers weren't overstimulating him, but he could find out the time when he needed to by pressing the top, and it stays illuminated for 5 seconds.

      Good luck!

      Delete
  25. Hope jones does the job required, I'm sure you are now doing all you can to help him.....it will be worth it.

    ReplyDelete
  26. I have a boy in my class (I teach 4th and 5th graders) who your son sounds a lot like. I have to give great kudos to his mom and dad (and to you) for working so hard to find out how to best help your children. You are my heroes!

    ReplyDelete
    Replies
    1. Thanks for your lovely comment :) It can be tough for both the students and teachers with this kind of issue - so am glad I (and I"m sure your students' parents feel the same) can do little things to help!

      Delete
  27. You have a lot on your plate and I commend you for having it so together! My three-year-old is more of a handful than most (I don't think he's ADD and too young for a diagnosis, but the word has been tossed around by his old pediatrician) and I know how frustrating it can be when people stare and judge when your kid is acting out. Hugs to you. It sounds like you are doing everything you can to help him out! Jones is super-cute!

    ReplyDelete
  28. Hi as a mum with a disabled daughter, I am not saying your son is disabled, but I can sympathize with the road you are travelling on. My daughter will be 24 in a couple of weeks and I knew something was wrong at 6 months it took a lot of pushing and ignoring Drs "come back when she is 3" to get help early on. I congratulate you for your perseverance . We actually got a wonderful speech therapist after we shifted from an outer suburb of Melbourne to country Vic, who worked with our daughter . As there is so much more info & help now children with "issues" can be better helped then years ago. We had an aide for our daughter we she was going to "normal" school part tie but after a couple of years we took her out as her aide informed us that we shouldn't get her salad sandwiches because she took too long to eat them ! This isn't an attitude that hopefully wouldn't be found today. I don't mind you blogging about your son it is refreshing to hear about such a great mum.

    ReplyDelete
    Replies
    1. Thank you for sharing your story. What a difficult path you've travelled! Well done for doing what's right for your child and going with your instinct even when the medical profession wasn't always helpful!

      Delete
  29. It is not just people with ADHD that concentrate better, or settle better with weight on their bodies. As a child, I could not sleep without a large number of blankets on me. Sometimes I insisted on being tucked in really tight as well. I was told that it is because this reminds us of being in the womb, a place that we were safe. I still prefer to have a heavy blanket to sleep with. My brother is the same.

    ReplyDelete
    Replies
    1. Very true - I have heard that from other people too. Just something about the weight and pressure really helps! It's amazing how our bodies work sometimes isn't it!

      Delete
  30. growing up I delt with the same issues. In america they call it sensory intergration deficet. The worst part is going into sensory overload. It was once decribed to me like this, Think of a coffee maker, the part you put the coffee grounds in is your brain. What happens when you don't have a filter? You get the stuff you need, and anything else dumped in all at once. Thru OT my mind was trained to "filter" out background sensory information. I also have ADHD and dyslexia to contend with, but remember that these disorders are linked to the intelgence gene, so you have a really bright kid. From reading your post I tell tell you already know your child is amazing

    ReplyDelete
    Replies
    1. Thank you for sharing your story! You are so right on the filter part - that is exactly it. I can only imagine how frustrating it must be at times. I'm so glad you had a supportive OT to help you!

      Delete
  31. When my son was diagnosed with SPD at the age of 7 and began OT, that was the beginning of a whole new wonderful world for both of us. He had a weighted lap blanket, as well as a weighted blanket he used in bed.

    Posting from my phone is hard so I will stop here. I just had to share that I have walked this road and you are not alone.

    He is a very blessed little boy to have you as his mommy. =)

    ReplyDelete
  32. Thank you so much for sharing. I have been a bit concerned about my own 4 year old and whether or not he is an ADHD, so it is good to have your perspective. You are obviously a very good mum! Love the platypus as well!

    ReplyDelete
  33. I've not been on your side of the equation, but I can tell you that ADHD kids do *not* like iceberg lettuce, tomato and cucumber for lunch. That's what I got presented with at infant school after my mum had worked out that eliminating food colourings & additives from my diet improved things no end. I was so sad that that's what I got day after day, because, being the 80s, all the food they served was loaded with colourings and additives. I did grow out of the colouring issues eventually, although, to be fair, I never eat much that would have them in, but I do remember being happy to finally be able to have a sweet as a teenager without someone shouting at me for the consequences...

    I hope Jones does his job, my problem was that I'd do all my work, and then want something else to do - smart teachers always have something else on hand, and a good variety of things to keep kids interested, dumb ones tell you to sit and be quiet and then you might get something else to do. My dad had a blazing row with one such teacher, who kept complaining that I was disrupting her classes by doing everyone else's work so they could play with me - he told her that if she gave me a book to read that would keep me occupied (a good long one mind you, not a picture one), and she insisted that unless I could prove I could sit quietly, then I wasn't allowed a book. I think his side ended with, 'Then hell mend you.' ;o) I would disagree with commenter #18 though, it's not attention seeking, it's wanting something to do that's stimulating and engaging, so you seek those things out if your current situation isn't doing it for you.

    I'd like to say I grew out of the fidgetiness, and the need to constantly do something, but I haven't, and even in my 30s my colleagues will tell you that I can't sit still at my desk if I've nothing to do (or I'm totally bored with what I've got) but hey, even with the ADHD and dyslexia I have a degree, and a good job, so it's not the end of the world!

    ReplyDelete
  34. Beautiful post. Well done, you. My best to you and J for continued peace and progress.

    ReplyDelete
  35. Beautiful post. Well done, you. My best to you and J for continued peace and progress.

    ReplyDelete
  36. Thanks for sharing, Kristy. You're amazing! Jones is to die for and In hope he'll do his job well. All the best for J and all of your family. x

    ReplyDelete
  37. Thanks for sharing. Wow, so much information. I'm a secondary teacher and I haven't had a student with ADHD for a few years. Perhaps it is not diagnosed as often as it was 10 or so years ago? We seem to have many more children that are on the Autism spectrum coming through these days. Maybe the understanding of these disorders is increasing? Anyway, you are a great Mum doing everything you can to make life and the education experience as easy as possible for your son. I commend you and wish you support. I do have a question. How did you know something was different or unusual, more than just being a busy boy? What was the trigger that made you pursue intervention?

    ReplyDelete
  38. I am on the Sensory Processing Disorder and Executive Dysfunction journey with you and the Atypical Autism and Aspergers journey with a few of these mums. So exciting to see a crafty pattern and a savvy mum come up with a cool weighted friend to take to class. And I think J is just such a precious boy because of you and your parents.

    ReplyDelete
  39. Thanks for sharing your story, and good luck on your journey with your son. I have a son with ASD, so totally understand the SPD side of things, and made a little dinosaur bean bag for him to sit with at school, sort of a dual purpose - with the weight on his lap, and something to fidget with by tossing from hand to hand, rubbing the grains through his fingers, or rubbing the fleecy side on his cheek (he loves to snuggle soft things).

    Your platy is gorgeous - hopefully it will do the trick for your boy. He is lucky to have a mum like you who is willing to try things, to help him, and mostly to fight for him. Our boy is only in year two, and already there have been several battles to teach others the understanding he needs. Best of luck to you, and thank goodness he has a mum with the patience and compassion he will need along the way!

    ReplyDelete
  40. Really interesting post Kristy, there is a lot to be said for a mum's intuition. Glad to hear that you and your son now have the support you need. The platypus sounds like a great idea, I fear you will be snowed under with requests!

    ReplyDelete
  41. Hi Kristy, you've got a lucky son, he's got a great mum! I recently made a weighted scarorder a lad at school with similar problems (not yet diagnosed yet, but definitely going to get some letters!) Velvet and cord for texture, and two big mug fills of kitty litter (in zippy bag) at each end (ends closed by Velcro) it has really helped him

    ReplyDelete

Thank you so much for taking the time to leave a comment. I read each and every word! I'll do my best to reply to them either via email or here on the blog, when time permits!