ADHD experiences


#1

Do any of you lovely parents have experience with severe ADHD? I have some questions and would really appreciate hearing any wisdom you can share.

First, a little about my son-

Jason is 9-years-old. I first noticed something was “wrong” when he was a toddler/preschooler. We weren’t around other children very often, but whenever we were, it was always painfully apparent that the other kids were way ahead of Jason developmentally. He wasn’t speaking on their level. He took much longer to potty train. Etc. As a parent, I was always embarrassed. I kept wondering, “What am I doing wrong?”

I told myself that kids learn at their own pace and each child is different. I felt, if he was behind, it was only because he was an only child and we lived in an isolated area. Once he got into school and could be socialized, he would catch up and do better.

Jason grew up and got into school… and that’s when our challenges really began. He has always struggled with his attention span. He’s easily distracted, and while I wouldn’t call him “hyper” because he doesn’t run around and jump off walls or shout- he does have an obviously lack of control physically. He absently touches his face, chews on his fingers, falls out of chairs, etc. If he is watching TV, even if it is something he likes, it is normal for him to migrate around the living room, standing rather than sitting in place. He also tends to watch TV with his head at an angle.

It’s worse for him socially. I think, even if he were developmentally normal, he would have a hard time fitting in because kids around here are allowed to watch/read/play things that I don’t find even remotely appropriate for children. So- for Jason, on top of just not liking what is “cool” and coming across as immature for those reasons, he has his quirks to deal with.

When he was in Kindergarten, I put together a big birthday party for him and had him hand out invites at school. No one came to the party… Not ONE kid… Same thing happened again in first grade. I was so devastated on his behalf, I stopped planning big parties and would only invite families I knew would come and we’d do something small.

I kept pushing off evaluations- because I really believed he’d outgrow the quirks, that kids were just mean and into bad things here, and that he was just bored academically because he already knew the stuff he was being taught.

But the teachers kept begging me to get him seen/evaluated. I had a lot of fire put on me… and I finally broke down and took him to his pediatrician.

(to be continued…)


#2

She diagnosed him with ADHD, but also strongly urged me to get him more thoroughly evaluated. I have a referral for a specialist, but the referrals are pushed back 6 months to a year! 6 months to a year when I’ve already dragged my feet for years… I just feel awful for my son.

The pediatrician feels that after a more thorough evaluation- they might place Jason on the autism spectrum. The ADHD I can see, but the Autism is harder for me to agree with. I’ve read a few books on the topic and Jason only seems to line up with one or two of the traits.

But at least for ADHD, the books I have read, those are definitely him.

So the latest…

It’s been a few months, and Jason just seems miserable. He doesn’t have friends. He doesn’t get invited out. He’s ALWAYS in trouble at school and at home. And I feel like it’s breaking his spirit. I honestly don’t think he can help himself w half the stuff he gets in trouble for. His brain just… doesn’t seem to be wired in the right way to “get” it.

So I got to the point where I broke down and agreed to try medications to see if it would help him focus just enough to get by until I can get that proper evaluation. I’m not sure it’s the best choice- but we’re getting pretty desperate…

Turns out- I can’t afford the medications anyway. They are 200 bucks a month until we hit our deductible and then we still have to pay a portion. It’s just really expensive and we weren’t making ends meet anyway…

So I am wondering what experiences you’ve had with ADHD. Have you come across anything natural that honestly WORKS for very severe cases? Are their resources you can suggest to someone who can’t afford professional therapies/ can’t even get into them for 6 months to a year?

Not only am I sad for my son and worried about him- I’m burning out on a personal level. I’m getting tired of hearing about complaints that feel petty from his teacher… like, and I kid you not, she tells me almost daily in her afternoon pickup complaint session that he’s a very gross boy that he nauseates the other kids at lunch time. All I can say is that he is not allowed to have bad manners at the dinner table and gets in trouble if he’s being rude. I may have to correct him frequently- but the worst issues we have at home = he can’t hold a fork or spoon correctly still. All I can figure is that either a- he’s starving come lunch time and not paying attention to how he looks w the food which is messy finger food anyway… or b- that because mom isn’t there he isn’t trying as hard. One of the ADHD traits is that they don’t care about future punishments or rewards, only immediate. So maybe he’s being “gross” because no one is there RIGHT then to correct him?

And it’s hard to care about impressing kids who don’t seem to like you anyway…

I just… I feel for the teacher, I do- but I feel for my kid too… and even as his mother who knows him best, most days I feel like I have no idea how to help either of them.

Help? :joy:


#3

You need to pursue a more thorough evaluation.

After a concrete diagnosis you should look into a school that can work with him better. Please get a definitive diagnosis.


#4

Absolutely- now that I’m past the denial stage that I deeply regret, I am pushing for that diagnosis. I am so shocked that it takes MONTHS to be seen. Is this normal? Is it because I am in a city? I wonder if I was willing to drive away from the city if I could be seen quicker? I don’t know.


#5

If you have Netflix, I strongly suggest the documentary “Take Your Pills”.

From what you say, it seems he may have some gross/fine motor skills issues. That is not an ADD thing, it is a separate issue.

Can he catch/throw a ball? Swim? Try sports/fun that is also exercise for those hand arm muscles and coordination. Moulding things out of clay, climbing trees, riding a bike, all of these things can help develop motor skills.

Talk to his Ped about the motor skills, if you are in the US the public schools have programs to help with delays.


#6

The motor skills are definitely a huge part of it, but there’s more to it than that. You would have to spend time w my son to see it. He gets distracted very easily. The slightest change in his environment and his focus will drift there. On the flip side, if he’s in a quiet and unstimulating environment- it’s just as bad. His focus just drifts inward instead of outward. He struggles a lot verbally too. He has an almost stutter. Instead of stuttering sounds, he repeats whole words like a broken record- like his sentences are getting lost somewhere between forming in his mind and getting out his mouth. “Mom, Mom… Mom… Can I… Can I… Can I watch TV?” etc.

I am not advocating for medication- I have been very against it for most of his life, but I’m also tired of seeing him struggle w little to no improvements despite both of our best efforts. It’s just something I’m willing to try if there’s even a snow balls chance it will help. And first sign that it is hurting him, we are done. Period.

I will look in on that documentary- but I am very sceptical about documentaries in general. Most seem to have agendas. I would rather look up the research myself. I have access to lots of studies through my college library. I will try that :frowning:


#7

Speech therapy should also be provided through an IEP at the school.

Your ped needs to look at each of these delays and be your advocate to get an IEP set up.

Music, have you tried singing with him?


#9

I’ve got mild ADHD (17 y/o boy here). Been diagnosed since 11… One thing that’s really helped me is sports/getting outside, along with limiting nonproductive ‘screen time’. If he starts playing sports, it’ll make making friends more likely, and increase his coordination. And playing outside is just underrated and therapeutic. If you’d like to PM me, you can pick my brain as someone who can maybe relate to your son.


#10

I think sports are a great idea! He is on a wait list for little league, so will be able to play if a spot opens up.

He used to go to a Tae Kwon Do studio and really loved it, but it was just too expensive for us :frowning:

When you live in a city, literally everything is crazy expensive. Heck- the baseball alone would be 200 bucks to register for before going out and buying pants and cleats etc.

I often find myself asking if stuff was this expensive when I was a kid! Makes me want to call my parents and thank them for all the stuff I got to do.


#11

sheesh. Do you guys have a yard/park nearby? If so, just take him there, and let him blow off steam. If he wants you to play with him, do it- kick a soccer ball, throw a football, etc.


#12

I can relate as our 15 yr old son has autism, developmental delay, and is non-verbal/non-conversational. He is “blissfully” unaware that he’s different from his 4 siblings and the rest of his peers. I say blissfully because he’s a happy boy and loves things that a child of 5 yrs old would enjoy. Which gives us peace that he’s not suffering from depression, etc.

Does your son notice things are “off”? Is he able to tell you how he feels? Or talk about his day?

You’ll be in my prayers. I know how our kids’ struggles affect us so deeply.

Peace.

+JMJ+


#13

Does your state have CHIP? If so, you should check eligibility requirements and they can help with the costs of ADHD meds. Sometimes if your income is too high for full coverage, they will give you coverage for a small monthly amount. My brother and SIL make about $90,000/yr but their son needs costly asthma meds every month which was hard for them to swing until they enrolled him in CHIP.

Some say fish oil supplements can help and others say caffeine can help. Rather than making kids with ADHD hyper it has the opposite effect. My daughter has it but she takes meds. I was told the above two natural aids by my pediatrician who suggested they might help in addition to the meds. Honestly, we only tried the fish oil for a month (they say it takes that long to start to see a difference) but we didn’t see any significant changes. It never hurts to try though. I know that desperate feeling to find anything that helps even just a little bit.

It is really a difficult diagnosis. One of my biggest regrets is not holding her back in kindergarten or first grade. I actually wish I would have started kindergarten late and even had her do two years of that so she would be with kids two years younger through school. I noticed she was different when I took her to a toddler gym and music class when she was 18 mos. and she didn’t want to sit like the other kids for circle time. ADHD kids are on average up to two years behind their peers in maturity so it’s really hard for them to relate to kids their own age.

My daughter is a senior in H.S. and she only has one friend who sits with her at lunch. She’s a sweet girl and has had such a hard time being with kids who are so much more mature than she is. She’s always gotten along with kids a few years younger. I even questioned the teachers when she was young about holding her back but they all said they didn’t think it necessary even if she was a little immature. The thing is the immaturity becomes more and more apparent the older they get and once middle school starts, the clear rejection from other kids is worse than it was in elementary.

She’s planning on working a part to full-time job for two years after graduation and then taking a two-year graphic design associate degree program at twenty, to give her a little more time to bloom so-to-speak. I feel like now that high school is about to be over, most of the pain of associating with peers who don’t understand her will fade and she can start business school at twenty with mostly 18 year olds and fit in more comfortably.

If you already have an ADHD diagnosis talk to his school about having the school psychologist do an evaluation to see if she can pick up on any learning disabilities. By unobtrusively observing him in the classroom, they can also tell you what they are seeing and make recommendations for accommodations that the teachers will have to follow such as sitting him up front to avoid distractions, giving him more time for tests and a quiet place to take tests, tapping his desk quietly or his shoulder as a non verbal cue to bring his attention back, having a classroom aid giving him some one-on-one instruction etc.


#14

Continued…

Hang in there. Get him the professional evaluations he needs but I hope some of what I’ve shared can help a little in the meantime. It is already almost the end of the school year so if you do ask for an evaluation the sooner the better, otherwise they may put it off until the beginning of next year. Where I live, they have one month to respond to a parent’s request for an eval. and if it’s too close to the end of the year, they can wait until after summer.


#15

Also, I’ve heard good things about eliminating processed foods/dyes/HFCS/gluten from diet… It certainly can’t hurt


#16

GET HIM THERAPY!!!

Get him the assessments! Call, call call, get on the cancelation list. Get something sooner than 6 months.

Stop feeling bad for him and yourself. It’s your reality. It’s his reality. ADHD has some perks. Both my brother and I are pretty severe ADHD. My brother is now a cop and while training was difficult, ADHD makes him an exceptionally good cop because he notices EVERYTHING. For me–ADHD makes me very creative and resourceful which is great when working with little kids.

He’s only 9. You sill have time where his brain is plastic enough for meaningful intervention.

Meds didn’t work for either of us, but for my friend’s son it does.

It sounds like there are quite a few other things going on…some of what you describe is not ADHD…it sounds like other things…so asssement is VERY needed.


#17

I have had somewhat severe ADHD all my life and was around your son’s age when I was diagnosed. A thorough evaluation is extremely important and helped me immensely. It can determine how exactly the ADHD exhibits itself in your son’s life and how to approach managing the disorder. Even if the evaluation comes back with autistic attributes, there is an entire spectrum to autism. I have met fully functioning adults who are autistic and manage their lives perfectly fine. The musician Adam Young, the founder of the music project Owl City, and the artist who sang the song “Fireflies” has stated his belief that he has one of the Autistic Spectrum Disorders, Asperger’s Syndrome, although it is formally diagnosed.

I too have the head tilt you mentioned, but mine was discovered to be from an astigmatism and it was just a unconscious coping mechanism to align my double vision. It got a lot better with corrective lenses due to the fact I caught it so late in life. You may want to ask him if he sees double. It can be helped at his young age by reading with graded prisms so that he may not have to wear glasses later in life if he does have astigmatism.

As to the sports, have you tried non-denominational church leagues in your area? Upwards Sports is a Christian sports program with leagues all over the world that provide kids opportunities to play sports for much less than secular leagues. He may not get scouted for a college team on these leagues, but he can still play with other kids his age.


#18

Very true. There’s more to this…


#19

Would it be possible for you to homeschool him?

I have 7 kids, three of them are on the autism spectrum and one is ADHD. Homeschooling works well for us and I never have to worry about my kids being bullied or singled out for being different or anything like that.

You could tailor his schooling to exactly what he needs, with homeschool.


#20

I’ve been teaching elementary school for 10+ years now and I’ve seen lots of kids diagnosed with ADHD. My first thought it reading your post was that many of the things you mentioned were more commonly associated with a processing disorder or an autism spectrum disorder, something your pediatrician apparently caught. I think you would do well to have him evaluated by a specialist. A year long wait seems more than excessive to me. I live in a large metro area and those I’ve known who sought treatment for their kids were able to get it much faster than that. In addition to having him evaluated by a specialist, there are these Brain Balance Centers that are popping up all over the place. One of my current student’s parents swears by them and her son has really made strides from kindergarten to first grade. If you had seen him last year, you wouldn’t believe how well he is doing in 1st grade. They are not currently medicating. My advice regarding medication is to be open to it, especially if your son is struggling, but if it is clear that it isn’t helping significantly, don’t be afraid to take him off it. If you don’t see results in a couple of months, it isn’t the right medication or dosage. I have seen kids who desperately need their medication in order to function in the classroom and I have seen kids who were clearly over-medicated or not getting the right medication or dosage. Hope that helps.


#21

On a personal level, you are doing the very best you can. I hope you puzzle this one out. If the teacher complains daily, it might be time to set up a meeting and really be open to her suggestions. You can try just a few of them, but the important thing is that the teacher is on your team. She can give clues which you will need when you go to the specialist.


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