How to get help?: We’ve been pretty... - CHADD's ADHD Pare...

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How to get help?

redmama2 profile image
11 Replies

We’ve been pretty sure my son has ADHD. All 3 of my siblings and both of his father’s siblings have ADHD so we’re familiar with what it looks like. We’ve been struggling with symptoms since he was 3 but it’s been really really bad lately. No mental health professionals near me will see him, let alone diagnose or treat him, until he’s 6. He’ll be 5 next month and my family can’t last another year like this.

Any resources anyone can recommend to help in the meantime? Books, websites, videos, support groups, etc.? I’d be super grateful for any tips that helped you during the early years as well, I’m at the end of my rope and crying myself to sleep every night. Thanks in advance.

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redmama2 profile image
redmama2
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Hi, I am not sure where you are but in the UK private paediatric psychiatrist will diagnose and prescribe even when a child is 5. Even private psychiatrists are currently often closing lists for the new patients (still backlog from Covid pandemic and also repercussion of leaving European Union- European doctors don’t want to practice in the UK anymore) but depending where in the country, normally waiting lists for private assessments are about 2-3 months.

Sometimes it’s worth to look for someone out of your area. I noticed that in the UK London has more choice in private but also much more expensive than in my local area. When I wanted my son to be seen by a paediatric neurologist I took him over 2 hours drive to Birmingham as I read this doctors profile and what he specialised in and his publications etc and it felt like he was good and also cheaper than in the capital.

NHS only will prescribe when a child is 6, however waiting lists for the NHS assessments are very long- about 1 year and over.

Another thought is that you seek help for yourself. As an example - my friend has son with mild ASD and she was finding herself in anxiety attacks and psychosomatic symptoms. She asked her GP for help and was prescribed something for her anxiety.

redmama2 profile image
redmama2 in reply to

I’m in the US so all psychologists are private. I’ve called every one that takes our insurance in a 2 hour radius and they either won’t see him until he’s 6, they have a 8 month+ waiting list, or both. I’m on meds already for anxiety and depression, I’ve had similar issues finding a therapist for myself. I’ve kinda given up on being seen, I was hoping there were resources I could use to help myself in the meantime.

in reply toredmama2

It does sound tough on you without any help. Have you tried any of the ‘sensory integration’ strategies? I went on a sensory processing training years ago, I have handouts at my son’s school, they got him a ‘wobbly cushion’ for sitting (helps kids to manage to sit for longer) and then kind of forgot about it (he has a wobbly wedge cushion also at home).

His ADHD nurse asked me to use a sticker chart with him and work towards a reward. He was meant to be getting a daily sticker if he does 5 minutes work and 5 minutes break maths practice up to about 15-20 minutes. I haven’t yet had any success with it but my son works well for his private tutor. It’s just for me he doesn’t want to do stuff. So since August he’s got a tutor. He works well for her- she puts a see through box with party bag stuff (colourful stationary, mini games, bubbles, balloons etc) on a table and she gives him stickers throughout the session (45 minutes tuition) and then at the end he is allowed to pick ‘reward’ or even 2 if he’s worked exceptionally hard. So let’s say yesterday he chose a mini game (then after tuition he went over to his little brother and said ‘you wanted this game so I earned it for you’ and little one answered ‘Thanks bro’ and this makes him important, kind of thing that he earned it for his brother). As I said - when I try to do that it doesn’t work, but as someone here pointed out I might have been on ‘wrong’ rewards. My son chose stuff that then he just said ‘Actually I don’t care about getting it or not’ and that was it. Now I will try it again with changed ‘rewards’ - he said he would love to go to ‘war museum’ and ‘natural history museum’ so I said that why don’t we make it that you will be earning this on your sticker chart ( a faff for me because I will have to make an effort at the weekend to take him… 😄).

Now I am revisiting sensory integration stuff as it seems it can help children to self regulate. You know, kind of the same thing as when a newborn is wrapped up and then they don’t cry. And loads of other stuff- you can take a sheet or a large blanket and you need 2 people and you ask your child to get flat on it and you lift it and rock him inside (kids love it and it calms them, my son is now too heavy for it but we have a hanging pod chair that he can use if he wants).

My son is 9 and on meds and he still will have a melt down if I ask him to do let’s say his maths homework. So as I said I now I am revisiting the sensory integration strategies - for some you don’t need resources. You can make a ‘cocoon wrap’ by rolling your child into a blanket, but I will be buying a ‘body sox’ for my son. Supposedly it’s calming - sort of deep pressure and it’s not expensive.

There are also weighted lap blankets - I know some parents make them themselves by sawing in dry chickpea etc.I am now looking at buying one for him.

I hope you get him to psychiatrist eventually. For us it was a game changer- my son was diagnosed when he was 8 (Covid stopped things, I was like you, well I am not a crier, but I had a day of breakdown when I was rolling myself on the floor and screaming my lungs and I felt like I wanted to pack a suitcase and go somewhere and never come back). My son was oppositional throughout Covid lockdowns- he would say ‘no’ to everything, no cooperation. He just wanted to be out on bikes or playing with his brother outdoors.

Now he’s on medication it is so much easier. I wish I have done the diagnosis and meds when he was 5… The medication is the best thing that ever happened to him even though it’s not perfect ( he’s now on Atomoxetine as Methylpenidate wasn’t doing any good to him (more harm than good).

As far as I know psychologist won’t be able to prescribe though. You need a paediatrician who does ADHD or psychiatrist.

redmama2 profile image
redmama2 in reply to

I have tried weighted blankets and doing a sticker reward chart after your recommendations. It seems to have helped so far! Thank you.

In my area you have to see a psychologist first and they recommend you to a psychiatrist to prescribe medication, you can't get an appointment with the psychiatrist without a recommendation so a psychologist would be the first step, that's what I meant.

in reply toredmama2

Ah, sorry about that ‘chain’ you have to go though to eventually get to the right specialist.

One of the parent/caters here recommended to me a book yesterday ‘The whole brain child’. I bought it today so I don’t know yet if indeed it’s so helpful but it has 14k positive reviews on Amazon so we will see…

I think with ADHD kids- all these ‘sensory’, stickers whatever work when it’s a novelty and sometimes just work one day and not the other … Their brains need variety… Luckily there are loads of these sensory strategies… Bath with colour changing tablets… Bath does calm some kids…I mean I even ask my son to ‘take peas out from the pods’, take him for fruit and veg collection to the farm (also you end up with the basket of some fruit). I wish we were farmers and he could just be riding on a tractor and taking care of animals😂Well one needs millions to buy a proper working farm. Somethings when I am so fed up I just think ‘Gosh, when he’s 18 I will ask him to go to New Zealand (the furthest I can think but English speaking😄) and he could just train in shearing sheep or something. Just out of my sight😄

Momtrying profile image
Momtrying

my son was diagnosed and prescribed medication by his primary care pediatrician. Have you tried going that route instead of a psychologist? Or asked what they’d recommendation would be?

i’ve read a couple of books by Dr. Russell Barkley which have been really good to teach me about what I’m actually dealing with with a child with ADHD. Things to try and remember that when I am about to lose it. The Calm parenting podcast is also pretty good.

I get it, I have a 13-year-old who is on medication and it helps so much but still frustrates me to no end and a five-year-old with major outbursts and a very particular personality that I have had many many crying episodes wondering how I’m going to keep going and how I can keep any sort of peace in our home.

What are you having the hardest time with with your son? I guess my biggest piece of advice , if it’s baes on behavior, would be to try and stay as calm as you can and not get into arguments with them. It’s so hard, but the only thing that has helped me is to not engage with them when theyre upset. Being on this website has helped so much just to show me that there are so many parents trying to do their best and going through the same thing as me. It helps to know that I am not failing, but my children are just having an especially hard time in life. Hang in there 😊

redmama2 profile image
redmama2 in reply toMomtrying

His pediatrician doesn't treat ADHD and gave us a list of psychologists to try but they won't see him until he's older and/or have a 6 month+ waiting list for an appointment.

Aggression and impulsivity are probably our biggest struggles. He's constantly hitting, throwing, biting, kicking, etc., even when not angry. He understands it hurts us and doesn't mean to hurt, and feels bad about it when he does hurt us but nothing works to prevent him from doing it again. He's very particular and when not getting his way he has a meltdown and there's no talking to him or reasoning with him. So often it leads to an argument (screaming match) in cases where he can't get his way. You're right, it is so hard to stay calm in those moments even though I know it makes things worse. He was kicked out of his last preschool for aggressive behavior and denied admission to several others because of behavior. He's not a bad kid, he's honestly really sweet, he just needs some help controlling himself. I recently discovered this forum and it has been very helpful to know I'm not alone at least. Thank you for your reply

MaudQ profile image
MaudQ

When my kid was little and couldn’t really put her feelings into words, occupational therapy was incredibly helpful. You could also look into some kind of parent coaching. I don’t have any specific suggestions, but our daughter’s therapist does parent sessions with us that make a huge difference. If you search for parent coaching on this site, or start a new thread, you might get some good recs. ADDitude magazine is great, Russell Barkley is great. I like Dr. Sharon Saline - she offers webinars, I think ADDitude magazine does too. Also, if you ask specific questions on this site, you’ll get some great answers. Finally, don’t give up on getting appointments. The whole system is a disaster but keep calling and put yourself on every waitlist. You never know when something is going to open up. Good luck and take care of yourself!

redmama2 profile image
redmama2 in reply toMaudQ

Thank you, he has a speech delay as well which I'm sure doesn't help the frustration of not being able to communicate his emotions. He's been in speech therapy for a year and that has helped so far. I was thinking about a parent training but there are a lot of them and they're expensive so I wasn't sure which ones were reputable or worth the money. I'll ask a question for specific recommendations, thank you.

LONGNAILS219 profile image
LONGNAILS219

My son was diagnosed at the age of 5. I do not why your child can not be seen.

redmama2 profile image
redmama2 in reply toLONGNAILS219

Idk, that's just what they tell me. They do not see patients under 6 years old. I thought the cut off was 5 years old so I was excited we were almost there so he could finally get officially diagnosed, then I started trying to make an appointment and nobody will take him.

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