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Parents of ADHD Children

Frustrated, sad, depressed
Keywords:


Just needed a place to vent… I’ve never, ‘blogged’ before, not sure if that is even what this is but I’m overwhelmed, frustrated and depressed.  I have an 8yo son, he is going to fail out of school if he continues at his current rate.  He has NO learning disabilities, so he has full ability to do all the work but when it is put in front of him he becomes completely frustrated and just shuts down.  I’ve sat in his classroom to help the teacher before, more to see how he was doing, he is on task maybe 10% of the time and the rest of the time he is in his own world.  He has ‘friends’ but I have to carefully monitor EVERYTHING.  For example he has a friend over right now.. I have to check on them every 3-5min because inevitably my son is hitting the child with something or wants to wrestle, etc.  He doesn’t want to hurt, he just wants to be rough ALL the time.  I am at my wits end.  We have tried EVERY medication there is and he had terrible, scary reactions to all of them.  The psychiatrist said he is a ‘poor metabolizer’ so the stuff just sits in his system.  For example a 1/4 dose of Ritalin will keep him awake until 3am with his heart racing.  He is already on a dye free, preservative free, gluten free diet… he takes high dose fish oil and I rub him down with any oil that MIGHT help.  You name it, I’ve tried it.  He’s a sweet boy, kind, loving, but he will never make it through school and will never have REAL friends if things continue the way they are.  I’m about to ask my doctor for anti-depressants because I feel so sad and hopeless all the time, strictly because of this.  And talking with parents of ‘normal’ kids makes me want to scream, they say things like ‘oh he’s just a boy’, ‘oh my kids don’t put their shoes on when I tell them either’... they don’t get it that i have to say it, literally 25 times and often times have to walk him to his shoes to have him get them on.  Other people will say ‘oh yeah, I think I’ve got some ADHD, I get so bored when I have to read!’ they have NO idea what real ADHD looks like and it makes me soooo mad.  I know there are people who have it WAY worse.  He sleeps well, he eats well, he’s otherwise phenomenally healthy and incredibly athletic.  We encourage his athleticism but unfortunately it’s only in solitary things like skateboarding, skiing, wake boarding.  He does poorly at ‘team’ sports because he can’t follow directions, he bothers other kids and doesn’t know what he is supposed to do next.  He’s on swim team right now, I thought that might be a good sort-of solo but still team sport.  The coach says he would do well if he could pay attention long enough to know what they are practicing… story of his life!  I feel like every day my ability to be patient and tolerant gets less and less.  I do my best to stay positive and try not to yell at him because I know that just makes things worse.  Just totally overwhelmed, frustrated and depressed….

Replies

I am so sorry you are having such a hard time. Have you gotten any outside support for yourself like counseling or coaching? ADHD is often harder on parents and families than on the kids with ADHD, as you well know. It’s really important that you take care of yourself.

Posted by parentcoachjoyce on Jan 16, 2017 at 9:48pm

I completely understand!!  It becomes increasingly frustrating when we try literally EVERYTHING and nothing seems to work.  Your son has a terrific advocate in you and you’re doing a great job!

Have you talked to the school about an IEP or a 504?  My son was on an IEP for many years and a Behavior Intervention Plan.  The IEP really gave my son some nontraditional accommodations that helped a lot.  A lot of his outbursts were due to feeling overwhelmed or “stupid” - so an accommodation was that he could go to the Resource Room (special ed room) whenever he felt that way.  He normally would ask the Special Ed teacher to tell him the directions again (and again and again).  He spent a couple hours each day in the Resource Room to give him a change in scenery, which also seemed to help.  The Special Ed teacher always seemed to have a better grasp on how to handle my son than the General Education teacher. 

The Behavior Intervention Plan (BIP) laid out actions and consequences and rewards.  My son was a vital part of its development.  He got to pick his rewards. And every person at the school who interacted with my son had to follow the BIP, which provided structure.  Teacher A’s expectations were the same as Teacher B’s, and so on.

He also went to weekly therapy sessions to help with social interactions.  This helped some, he learned how to emphasize a lot with others but still has major issues making friends.  He’s still that kid that no one shows up to his birthday party.

In the beginning, the structure, IEP and BIP were INTENSE and strictly followed.  In the beginning there were biweekly tweaks to the plans.  And there were a lot of good days and bad days.  Over time (a few school years), we were able to bring down a lot of it.  The actual IEP and BIP are gone, but the intense structure is still there.  There is no deviations in his consequences, rewards or schedule. 

My son has figured out that he needs visual reminders of his behavior.  His school works on a demerit system.  4 demerits in a day and he gets detention.  He asked if he could keep a post it on his desk to mark when he got a demerit.  He says this acts like a reminder of the consequence to him. 

I know you probably heard it before, but hang in there.

Posted by Pump2Duncan on Jan 16, 2017 at 9:49pm

Thanks, I’ve looked for local support groups but there aren’t any near me. 

As for 504 plan, UGH!  We pulled him from Catholic school middle of the year last year (1st grade) and put him into public b/c the Catholic school basically said, unless you can medicate him (which we had tried) we can’t help him.  The public school was FANTASTIC!  His teacher was wonderful, I explained to her how he had ADHD and per his last teacher was ‘as bad as it gets’ but that he couldn’t tolerate any of the meds. She was totally nonplused… just said ‘oh I have lots of other ways of helping him!’ and she DID!  She said he definitely needed a 504 plan but since he came late in the year AND we found out we were moving over the summer she wasn’t able to get it built before we left.  However, she gave me a 3 page letter detailing his strengths, weaknesses and some of the accommodates she recommended for his 504.  Well, I brought that to his new teacher in his new school on day 1… nothing…  When we first moved I didn’t start working right away so I used that opportunity to sit in on his classroom and ‘volunteer’ to see how he was doing.  I left every time crying because he was so ‘out in left field’ 90% of the time.  Unfortunately this is only this teacher’s 2nd year teaching, she’s trying her best but really doesn’t know what to do.  So I ask her again about a 504 and resources to help him.  FINALLY they set up a meeting with the guidance counselor, vice principal, teacher and resource teacher… in NOVEMBER.  The teacher reads through his issues and what she has done to try to help him. They come up with a few other strategies, like a disc seat, new fidget toy, etc. and say they will meet again in 2 weeks, STILL no 504 because they said they have to do all this FIRST!!!  Well, it’s been 6 weeks and I still haven’t heard anything.  The disc seat and new fidget toy didn’t help.  My cousin who is a special ed teacher recommended a few things like verbal testing, etc. but again, I have to get the school on board.  I don’t know how/why getting a 504 would take so long but I also don’t know what ELSE the 504 would even provide us?!  Thanks for reading/listening and responding…  I’ve finally stopped crying (for today smile

Posted by NCAM on Jan 16, 2017 at 10:07pm

Oh, I wanted to hear more about the therapy sessions?

The last psychiatrist we were referred to, you had to see a psychologist too.  My son hated it… went 3 times, said she just asked him a bunch of questions and he never got why he was there or what the point of it was and honestly I couldn’t either.  What sort of success/help did you find with the psychotherapy?

Posted by NCAM on Jan 16, 2017 at 10:14pm

I hear you and trust me you are not alone in this.
Have you tried Strattera ? It takes a few unpleasant weeks to start up but well worth it with 24 hr coverage so no coming down. It helps focus and mood.
For our son the psy added Zoloft and the combo has worked brilliantly.
The Zoloft is used off label and has evened out his mood, reduced extreme behaviour and helped him concentrate. I never thought we would get to this point.
Good luck. It does take so much time and effort finding the right meds and know you are not alone.
Emma

Posted by Emma Jones on Jan 16, 2017 at 10:29pm

So sorry, and a few thoughts:

1. Has he had and IQ and academic test? We had to prove our daughter had a significant difference between her IQ (ability) and academic results in order to achieve accommodations at school. The school district will do the testing for free but only after the child is 2 years behind in school. We had an independent company (psychologist) do the testing, it was a whopping $2,000, but worth it to us as we’ve used the data many times in the last few years. Subsequently we also had the school district test her.  Our daughters IQ was 20 points higher than her her academic scores, so obviously she was no where near reaching her academic potential.

2. Although you’ve tried every med, have you tried different combos, and other things to counter the bad side affects? Our dtr didn’t metabolize ANY of the stimulants well enough, so finally, after 4 years of trial and error she takes ritalin (stimulant) plus strattera (non stimulant) and it is a game changer! And she takes melatonin almost nightly to help with sleeping (and a million blankets, she seems to need the weight to relax)

3. Depression is treatable, I hope you can find a good doctor to prescribe what you need that will help.Exercise is a great stress reliever.

4. Try to find a support group. Everyone on this blog knows EXACTLY what you’re going through and the extreme frustration and CONSTANT WORK parents have to go through to help their kids. You’re not alone!

Posted by boomer on Jan 16, 2017 at 10:30pm

504 plans are just meant to outline accommodations that will help him in class to “level the playing field” in school despite his ADHD. 504 plans only “work” if the the plan has accommodations in it that will actually help him meet his unique needs.  It’s sometimes a lot of trial and error to find what will work. But, once there is a 504 in place, by law the teacher must follow it. Also, FYI, 504 plans are only good for a year. They have to be updated every year. Maybe since it’s been awhile it is a good time to check on the status with the school counselor.

FYI, here is an article I wrote that contains 25 accommodations you could use for a 504. http://www.parentcoachjoyce.com/classroom-accommodations/

Joyce Mabe
Parent coach, licensed school counselor, mom to adult son with ADHD
http://www.parentcoachjoyce.com

Posted by parentcoachjoyce on Jan 16, 2017 at 10:50pm

1)  The 504 Plan ... yeah it can take awhile.  Be the squeaky wheel and know your child’s rights.  Research, research, RESEARCH!  I was emailing daily!  Come aimed with your own recommendations for suggestions too.  Don’t just let the teachers tell you what they can do for your child.  If something works at home, try implementing that in the classroom setting. 

2)  My son did “play” therapy.  The initial meeting was just with me to discuss my concerns and thoughts.  Then the therapist met with my son and they played.  I thought the technique was stupid at first.  Because seriously, how can drawing a picture or playing with legos really help?  But it did.

For example, one session the therapist built a home out of legos.  My son immediately destroyed it.  And the therapist acted sad and hurt about her destroyed home.  And then asked “how do you think your action made me feel?”  My son replied “ummm I don’t know”.  Couple sessions later he did it again, she made the same face, but this time he helped put it back together and see acted happy.  Couple more sessions and instead of destroying her creation, he started working with her to make it better. 

He also had an eating issue, a sub-issue of an anxiety disorder which caused him to feel sick a lot of the time.  Because of his age, he associated the sick feeling with whatever he ate right before feeling sick.  Which quickly eliminated 3/4ths of food from his deit.

So she drew pictures of a panda and asked “can the panda have some fruit?  He’s pretty hungry”.  And my son would answer “no, the Panda doesn’t like fruit, it makes him sick”.  So she’d draw the Panda “hungry”.  After a few sessions, the Panda was eating everything and the panda was happy.  Oddly enough, soon after the Panda would try some new food, my son would eat that food when it was presented to him at home.  Only thing the Panda would never eat was mashed potatoes, my son still HATES mashed potatoes…LOL. 

We took those steps from age 5-8, and then did start him on medication at age 8.  He’s on Concerta.  Our pediatrician really knows her stuff when it comes to ADHD medications.  You might try talking to your pediatrician about the metabolism issue to see if there is something that can be done.  I prefer talking to my pediatrician about the medication because she knows the full history and underlying physical issues my son has as well as the ADHD and she’s able to develop a more full-bodied solution.

Posted by Pump2Duncan on Jan 16, 2017 at 10:55pm

When I mentioned counseling or coaching, I meant for you, not him. You have a difficult situation and a long haul ahead of you. Working 1 on 1 with someone can really help by not only giving you a safe, understanding place to vent but also to teach you some ways to cope with these challenges in a way that doesn’t drain you emotionally. It’s like the airplane speech…you have to put the oxygen mask on yourself first before helping others!

Posted by parentcoachjoyce on Jan 16, 2017 at 11:00pm

Thanks for all the info everyone! 

We had him independently tested by a psychologist back when he was in K.  They tested for all learning disabilities and he came up fine on everything but definitely positive for ADHD.  I was only 6yo when he was tested but I knew probably by the time he was 3.5 that something was up.  I suspected ADHD but I was really surprised when we got the results.  NOT because they were positive but because of how SEVERE the psychiatrist said his ADHD was.  At that time he was only in K (for the second time however as we held him back) and to me seemed to be a fairly typical 6yo but a bit more difficult to keep on task.  He seemed to learn everything… well when the psych gave us the results we asked, on a scale of 1-10, 10 being the worst where you put him and the psych said, about an 8!  My husband and I were FLOORED!  I asked her how he could be so high and she said because he was very smart and had no learning disabilities but being half way through his second year of K he had ‘retained’ very little.  She pretty much said, there are lots of things you can do to help him but he is likely going to need medication. 

Yes, we tried straterra, he took it for about 2 weeks and was horribly depressed, would cry uncontrollably for 30min at a time and when you asked him why he was crying he couldn’t tell you why.  and then he became jaundiced.  That’s when his pediatrician started to wonder if he has a medication metabolism problem and referred us to a psychiatrist.  We tried concerta and Intuniv with the psychiatrist.  The concerta was BAD for him, made him go nuts and gave him a horrible facial tic.  The intuniv seemed like a miracle drug at super low dose for the first 2 weeks then suddenly stopped working.  When we went up to a slightly higher dose (still way below normal dosing) he passed out and ended up in the hospital with low blood pressure. 

We are about to see a new psychiatrist on Thursday and I’m planning to ask about Zoloft.  It’s metabolized differently then the stimulants and non-stimulants and I’m hoping that maybe it will just take the edge off the anxiety over school work enough that he’ll be willing to even TRY.

I may look into more of the psychotherapy options after reading some other posts on here.  He’s 8yo, will be 9 in the summer so I don’t know if ‘play’ therapy would work but maybe some other type of therapy.

I recently found a website called Fastbraiin.com and really like it!  It’s given me a new way of framing this for him.  I tell him his brain is just faster than average people and that it’s nearly a super power but just like super heroes he has to know how to control his super power.  That at least made him (and me) feel good for… a moment.  I just have to keep reminding myself of that so I can continue to stay positive. 

Thanks again for all the feedback!

Posted by NCAM on Jan 17, 2017 at 2:27am

Hi @NCAM!

I am sorry you are struggling so much. Being young, having severe ADHD, and no effective treatment is a really tough road.

First, you said, he doesn’t have learning disabilities “so he has full ability to do all the work.” I challenge you to change your thinking on that. ADHD IS a learning disability. It affects the capability to perform in school in all subjects and with most expectations.

Inattention, distractibility, poor working memory, need to move a lot and be stimulated all the time, feeling overwhelmed, not knowing how to get started, and more affect a student’s ability to do the work.
http://www.additudemag.com/adhdblogs/30/11822.html

If he is that impaired at school, I would request that he be evaluated for special education services and an IEP plan (use this sample letter to make the request: http://www.additudemag.com/adhd/article/792.html). The IEP will provide more help and is more enforceable than a 504 Plan (http://www.additudemag.com/adhd-web/article/625.html).

In addition, I would request a Functional Behavior Assessment (FBA) and a resulting Behavior Intervention Plan (BIP). This will help teachers and school staff determine WHY he has these behaviors, and outline a plan to help them improve the behaviors.

If he’s struggling socially, talk with the school guidance counselor and ask him or her to get involved. Part of their job is to help students with social struggles and make sure they are doing well socially when at school. We have done this many times and it has always been helpful.

As for medication, my son is also super sensitive to medications (and even vitamins and supplements) although not to the same extreme. There are a couple stimulants that can be titrated down to very low doses - Quillivant is a liquid so he could take as little as a drop. And Vyvanse can be titrated in water (http://www.additudemag.com/adhdblogs/11/10615.html).

There are also medications other than stimulants often used off-label for ADHD when an individual can’t tolerate stimulants. Intuniv is approved for ADHD. Wellbutrin and tri-cyclic antidepressants are the ones often used off-label.

And I would have him tested for MTHFR—it’s a genetic abnormality that can affect medication efficacy. It’s common in kids with Autism and ADHD. My son has it and treating it made a big difference in a lot of ways.

And don’t worry about team sports and other things kids are “supposed to do.” A healthy lifestyle and opportunities to nurture his interests and talents and feel success is what is key.

Penny
ADDconnect Moderator, Author on Parenting ADHD, Mom to teen boy with ADHD, LDs, and autism

Posted by adhdmomma on Jan 17, 2017 at 3:06pm

You’ve pretty much got all the info.  Many of us have been there.  I would like to add three things:  find a doctor that will work closely with you to get meds figured out.  Two, don’t give up!  And three, trust your instincts!

Stop with the counselors/doctors that are not working.  Try someone else, keep digging.  I have been down the same road.  Now at age 11, my son is stabilized with his severe ADHD.  It’s a marathon. Not a sprint.  Hang in there!  Don’t take no for an answer.  He can be helped!
Good luck!

Posted by Pdxlaura on Jan 17, 2017 at 11:04pm

I understand how you feel. Before we helped my son with medication it was so rough. It’s easier now but I still cry and worry often. Hang in there I will be wishing you well.

Posted by Nandell on Jan 19, 2017 at 4:27am

I just want to throw something in…have you checked for Asperger’s? It can be comorbid with ADHD, or the psychologist may sometimes misdiagnose Asperger’s as severe ADHD. “Poor metabolizers” of stimulants are often Aspie.

The first sign of Asperger’s in my son was being much too rough with his classmates. One solution would be a “sensory diet” to make sure he gets enough of the deep inputs he’s looking for with rough play. And that’s good, because it’s something you can start today. Take him on the swings and the merry go round, let him play in the sand, and make sure he has plenty of exercise time. A dozen donuts says it will make a world of difference, whether he’s Aspie or not.

As for the executive function problem (shutting down when homework is placed in front of him), my son and I have both been struggling with that for years. It can help to give him something to fidget with while he works or let him stand instead of sitting, but if I really had a good solution to that I would be a very rich woman. It’s hard, but you do get through it.

Best of luck to you and your boy.

Posted by MrsPerky on Jan 20, 2017 at 5:39pm

Hello. My son has ADHD. He is 12 1/2 and has been medicated since the latter part of 2nd grade. I would like to recommend the book “Smart but Scattered”, by Peg Dawson and Richard Guare. There is a version of the book (purple cover) geared toward school-aged children. This book talks about Executive Functions….what they are, how to identify your child’s strengths/weaknesses, how to identify yours as a parent, and how to improve on the weaknesses. It is really good and very important info, esp. for people with ADHD. Also, Dr. Russ Barkley is an expert on ADHD (the book authors speak of him). Google him. (I still need to do this myself.) Peace to you as you journey on with this trying issue!

Posted by Jill Curry on Jan 20, 2017 at 7:52pm

Hey. I’m not from your country but if its okay i can share something from my experience as a child and mother. When i was littel, i Struggel a lot at school. It was all depending on the teatcher. When it was someone That saw me as a invidually person i was all in. If there was a theacher that saw me as a pain (and for me it was Just the feeling or the knowlegd of irritation of the teacher) i couldent cope.  I Just almost make it at school. But when i got older i met 2 teacher’s that gave me positiv feedback. And when i got a small positiv and something to understand why school is importen.  I got the highest grade in Class as a helping nurse. When iv’e had this education, i had hope and went to the university. The dame happend A at the bachelor. So now I’m a nurse to all my teachers suprise. I know this is not what you expectet , but dont lose your fate.
My to kids are the same as yours. Its full speed and jumping and hurtig eachother and others. But they dont do it to be mean. It’s a daily Struggel. But if i dont yell and give them other ways to handel themselves they do better. And if they do something good, see it and praise it. Every day is different, sometimes it works and others days not.  And when my kids cant slow down, i need to hjelp them. My kids need a littel time alone From stimuli. They Become overhvelmed. From my home place it have been done New studies, Many people whit adhd has problems whit the abdomen, it works in some cases 8 times slower than normal. Adhd people often has trubbel with the mucels and need to sit laid back and move around in Class. I dont know if he have trives to have music in Class or when he do home work.  Is it a clock at school that ticks.. It could br Many things. My kids got more Calm when they got coping strategies, and was tolv why and not No.  When my kids want to fight play i give them a choice to hug or play nice. If not the play time is over, i say it 3 times. If it dosent het heard i take one kid alone and so the other etc. So i know it have been understand, . When it have Been alot i talk to them separat at bedtime. They are more open for process then. Of course not if they are to tierd.  I always need to putte them to bed before they are to tierd.  If i skip it they are holding us up all night.  This was messy ,sorry. IT so much to say and my english writing is not good😂 but every parent and kids are different. So you Just need to find your way.and not lissen to everyone Else. One thing that make all the different is how the mom is doing. Take care of your selfe. I really notes the diffrent with the kids. If i feel its a bad day.  Or if i Sad etc the kids feel it and get more active etc. If im in a good place the kids turn there mood every time. Or mabye it more easy for me😉 this was not what you hoped for so im sorry. But it works over half the time in my house. But its all on me. I det the mood and parenting.  But its not easy and it takes a lot of energi .

Posted by EIK on Jan 20, 2017 at 10:56pm

I would also look into Sensory Processing Disorder (SPD)
What that is:
Children with sensory processing issues can be oversensitive to sights, sounds, textures, flavors, smells and other sensory input.

You mentioned “hitting the child with something or wants to wrestle, etc.  He doesn’t want to hurt, he just wants to be rough ALL the time”

So constant contact and pushing or wrestling. Could do with the amount of stimulation or lack of it that he is getting.
Could also try asking him why he likes to hit/wrestle be rough so much? What does he get out of it? Feeling calm? Expend excess energy?

Posted by Erised on Jan 21, 2017 at 6:24am

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