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What do you know now that you wish you had been told when your child was first diagnosed?

CalvinHU profile image
23 Replies

What general advice would you give a parent whose child is newly diagnosed with ADHD?

What advice do you think your child would give to a recently diagnosed child?

Share your experiences and interact with other members in the comments below! :)

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CalvinHU profile image
CalvinHU
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23 Replies
Leighz77 profile image
Leighz77

I think about how medication and the stigma surrounding meds at first and my advice would be to just roll with it,don't be afraid to try what could work for your child's condition.I think my son would pretty much say the same.

Education has been the worst experience of all with my son and I'm probably not alone,I've been stuck for the last two years though as he's struggled through the mainstream environment that he had to attend,being a new build "super school "made up of 1700+ pupils from four closed schools in the area,the one2one closed unit he was attending kept him for his first year (year 7) of secondary mainstream and then integrated him into year 8 and it has been a nightmare since.Two years of phone calls,barricades,inclusions,exclusions and it's unfair,ok we have a good support network but he needs some more support I feel because this school just isn't working.

Georgina1475 profile image
Georgina1475 in reply to Leighz77

The education situation concerns me greatly. If I hear "there's no money" one more time!!!

meggypegs profile image
meggypegs in reply to Leighz77

School isn't working for my son either. His SENCO says he needs a special school. There is only one suitable school available. It is full. Exclusions, punishments etc at his present school are making things worse. We have no idea what to do for his future, and we need more help and advice in what to do.

Leighz77 profile image
Leighz77 in reply to meggypegs

Same here except the only other school is geared more towards those who are in care and youth offenders team related.

Georgina1475 profile image
Georgina1475

We're still in the early stages after diagnosis but reading posts here has already been valuable and in the future it's time to seek medication I know I can get information here that I might not otheriwse get.

My son isn't really aware of the diagnosis yet, he know he has difficulties with some things but we haven't made anything of it.

CalvinHU profile image
CalvinHU in reply to Georgina1475

Glad you're finding support in this community!

JanePound profile image
JanePound

You need patience and then some more patience. You are probably going to be supporting your child for a lot longer than you think. For instance, mine is 30 in a week or so, yet sometimes things get on top of her and I need to help. Admittedly, she has a high stress job at present and has been travelling internationally, but she really needs to see the doctor for an orthopaedic issue and has not managed to make time in her head to make the appointment. I have to walk the fine line between stepping in and respecting her independence. In the end, I said, 'Look, I can make the call. Would you like me to do it for you if you're too busy in meetings?'

When she gets overwhelmed at work and slightly panicky, she steps away from her desk and goes into the kitchen for a coffee or a glass of water. She breathes and takes a moment.

Sometimes they snap at you for no reason at all. Count to 10 and don't take it personally. I had a thing where I would say, 'Can we please do that again without the abuse?' I would walk out of the room and then come back and ask the question again and this time I would get a sensible answer.

Even now she needs her own space, so that should be respected.

I have received a lot of support from friends and relatives. My sister's children have a wide range of issues - Asperger's, ADHD, dyslexia and two of the four are now hypothyroid. ~Both of mine are hypothyroid. We know they weren't swapped in the nursery and we have really strong genetics. However, by giving them time to develop, they are all doing well. We have 6 children between us and there are 5 degrees, one masters and a whole range of professional qualifications there. ADHD children might not do what they are supposed to do when the rest of the world expects them to do it. They need time, but that's not easy for every family.

You need to discuss strategies with your child so that they are armed for the future. Although we both have ADHD, mine is the inattentive type so I can go into my head quite happily and go somewhere else for ages. My solutions are not always hers. She procrastinates quite a bit and that can be infuriating. However, it's all part of the wonderful young woman she has become.

meggypegs profile image
meggypegs in reply to JanePound

Yes, patience is essential!

paradoxlive profile image
paradoxlive in reply to JanePound

May I please use, 'Can we please do that again without the abuse?' That's got to be the most meaningful and useful "reset" I've heard!

JanePound profile image
JanePound in reply to paradoxlive

Please do.

Kokohelm profile image
Kokohelm in reply to paradoxlive

Awesome!

vg1955 profile image
vg1955

Early diagnosis is imperative my son was almost a teenager and didn't want to be " different" so most of the help available he refused .If you have the slightest feeling something is not right with your child don't give up push your doctor for a referral get teachers involved because more than likely there are problems at school .keep a diary of behaviours etc.is there a pattern .make time for your partner and other children they tend to take a back seat and may be jealous of the time and attention spent on the adhd child .look after yourself mind and body accept help you need time out too as things can soon overwhelm you.my son is now in his twenties my marriage broke down due to the stress and he still has problems as an adult don't despair I always think things could be a lot worse

moiraroyal profile image
moiraroyal

Having ADHD isn't the end of the world-there are far worse things.

Don't be afraid to try medication and don't believe the horror stories about side effects etc

It can be totally exasperating having a child with ADHD at times-just like any other child, but it does get easier

sheila1kerry profile image
sheila1kerry in reply to moiraroyal

I love your post, also as you stated "it does get easier" that to me was the most important thing. So that even on a really bad day i knew that things would get easier. The problems lessen gradually over time, then one day you realise you have gone a week without an issue, then two weeks, then a month. Slowly, very slowly, they seem to almost grow out of it. Yes, there will always be odd days, my son is 27 now and a wonderful young man. He works hard, has a lovely girlfriend and enjoys his life. As someone said already, there are much worse problems to have to deal with.

Sheila1kerry

meggypegs profile image
meggypegs

Keep an open mind about treatments, do your research about what drugs are available and how they might help. Find out how diet might help. Contact other parents with children in the same position, get support from them, and practical help. There are groups on Facebook etc. Educate friends and family, to get them on your team. Take all the help you are offered. Babysitters are invaluable. You will need a break.

Ariadne1925 profile image
Ariadne1925

We are newly diagnosed so no advice.

hertsred profile image
hertsred

I'm not really sure about this one. We had been living with ADHD for several years and had learned through experience to manage our son's behaviours. I suppose if we had known some of the techniques to deflect his attention away from sensory overload, that would have made life easier.

ChristinaReader profile image
ChristinaReader in reply to hertsred

How do you stop the sensory overload? Right now my daughter hides under her blanket at home or under a table at school. What else can we try?

tomhealy profile image
tomhealy

To work with professionals! As much as people may slate medication or other types of therapy different people respond to different things, you can't be afraid to try things and it is about finding something that works. Working with the school is the most important thing to ensure that you can receive the best education.

I think that the advice given would be to find something that they can completely invest themselves in as this makes focus and attention easier.

Healthykid profile image
Healthykid

I would say your main goal is to raise a successful and independent child. To obtain this will take lots of work and you will always have to advocate for your child. That be with doctors, teachers, or even strangers. Everyone has different opinions about your child and their actions but you have to be the one to stand up to those who have cruel comments about the issues ADHD children have because no one else will do it for you. Once they prove how great they can be every issue just seems like a bump in the road.

ChristinaReader profile image
ChristinaReader

Okay, this is going to sound awful but I just didn't know any better. I wish someone had told me sooner that even smart kids can have ADHD. Since my daughter was 3 I kept looking at ADHD checklists saying to myself she does 6 out of 8 symptoms but she's so smart, she can't possibly have it, can she? Guess what even her Kindergarten teacher and first grade teacher missed it because she's a girl! They assumed only boys could have it and referred her for autism testing. There are so many misconceptions out there. I'm learning now that all kinds of people can have ADHD, maybe even me. So my daughter just turned 7 and I've known for a month now that she has ADHD. I'm trying to learn all I can because I know that ignorance hurts.

katejames profile image
katejames

Calvin, I think one thing I would change is to have some type of therapy for the entire family. Its tricky because there are a lot of ineffective therapists out there but it would have helped us. We are a family of 5. The first is a girl, now 19, who doesn't want to be bothered by her loud, impulsive and sometimes inappropriate (when he wants attention from her many friends) younger brother. The next is a boy now 17 and a junior in high school who is naturally more compassionate and tries with his younger brother to be kind but recently said all we do is yell in the house. The third is our youngest boy, 12, who went on meds in third grade and is now finishing up 6th. My husband is the breadwinner, very responsible, used to be very calm and patient. I'm a stay at home mom, bipolar, used to be the "fun one". We thought we could figure this all out ourselves, but ADHD infiltrates every aspect of a family. My youngest son feels his sister doesn't really want to hang with him and at 12 he's going to give up on her. She and her 17 yr old brother have been told for a long time "this could have been you" and "he doesn't have the friends you two have so make home a safe and welcoming place" but its hard for kids to grasp especially when they see their parents lose it after telling their younger brother for the 10th time to eat his food or get his shoes on or turn the tv off. My husband and I both come from families of ten - lots of personalities but there were lots of good times. I'm not sure our kids are going to have those good memories. It was better before the older kids got phones and totally got addicted to them. The older two are good kids too. My daughter is kind and lovely to other children but is burnt out on her youngest brother. So.....my advice is to get therapy sooner rather than later for family members so they really understand the affliction and ways to cope while still loving that person with ADHD. My son has pushed my husband to say and do things we never thought possible. I'm new to this site - youre doing far better than us just by availing yourself of this information from others so you are on the right path.

Take care.

CalvinHU profile image
CalvinHU in reply to katejames

Thanks for sharing katejames ! Hope you find support on this community and use your experiences to help out others!

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