ADHD medication?

[ashamama]

Can anyone share their experiences with ADHD medication? We have a Dr appointment on Wednesday and I am working up the nerve to ask about medication. Part of me thinks we homeschool so we can accommodate him, why would he need medication? The other part of me thinks I can no longer handle that he does not know how to simply walk accross the room or sit on a sofa. He is 6 and acts like he is 3. Worse, my 2 year old is picking up these behaviors. And I can't have them both doing it. Developmentally I doubt my younger son has ADHD, he is just at that stage where he wants to do everything his brother does. I can control my older one, one on one,but even seeing his brother is distracting enough to push him into hyper impulsively. I want to ask about medication, but part of me feels like I am failing if I do, and I need to get over that part. Typical consequences don't seem to affect him.

[OneStepAtATime]

:grouphug:  :grouphug:  :grouphug:

 

I can't speak from personal experience with my own children but I have friends that have dealt with this.  For some, they felt medication was absolutely the best solution.  Their children had extreme issues and were not able to move forward academically or socially in an effective manner because they were way beyond the norm for hyperactivity and lack of focus.  For others, they were able to make accommodations and help the child find coping mechanisms.  Some tried meds and it just didn't work out.  Others never chose that path.   I don't think their children were as extreme, though, and maturity helped.  

 

Your child is very young.  Obviously that needs to be taken into consideration.  However, there ARE milder non-stimulant medications out there that many find success with.  It doesn't hurt to just ask.  Seek out more information.  Talk to your doctor and find out what they say.  Has your child actually been diagnosed?

 

I will say that the parents I know who use meds with their children took a long time to find the right med and the right dosage.  It was a difficult process involving diligence and working closely with medical professionals over quite a bit of time.  With one of my closest friends they ended up with a slow release patch.  Their daughter puts the patch on in the morning, is able to function through her academics and extra curriculars then removes it hours before she has to go to sleep.  Her grades improved significantly, she began to make real friends, her confidence went up and her relationship with her siblings improved.  It took nearly a year to get to the right med and the right dosage.  In that time her weight plummeted dangerously, she had other health issues and they were very discouraged and feared they had made a bad decision.  Still, their family are in the medical field and they decided to keep trying.  They found what worked and it has made a huge difference.  They choose not to use the patch on weekends and only in limited fashion during the summer to lessen exposure but it absolutely has made a huge difference in their lives.  It is not a magic bullet, however.  There are still issues.  It helps her manage those issues, though.  

 

Another thing I will mention simply because another friend of mine had some unrealistic expectations for their child.  This does not change the child's basic personality.  If your personality is introverted and your child's personality is extroverted, this will not suddenly turn your child into an introvert.  And you won't suddenly get the perfect kid that cleans up after themselves without being asked and who never does anything impulsively or never gets angry or whatever.  I realize you probably know that already but because of my other friend and her expectations along those lines I felt I should say something, just in case.  

 

I have a friend who is ADHD whose story I will share with you.  She was undiagnosed for years.  She had a traumatic experience and was in long term therapy for PTSD.  She was married and had kids.  The marriage was on rocky ground but the PTSD was only the latest issue.  There had been problems before.  Her therapist one day asked if she might have ADHD.  The woman said no.  The therapist suggested that they run various tests to rule out other issues.  After extensive testing the therapist asked her to try a very low dose of ADHD medication.  The woman remembers vividly when the meds hit.  She was showering, while thinking of millions of things that needed to be done which led to millions of other thoughts and so on.  Showers were usually hard for her because she would lose focus on just showering.  Frequently she would run out of hot water as she showered.  Suddenly her brain couldn't think of those millions of things.  She was focusing just on the water and cleaning herself.  She said it felt like the whole world had slowed down to a crawl.  She was terrified.  She called the therapist, sobbing, and told her she had broken her brain.  She had never, in her entire life, been able to focus on just one or two things at a time.  She had always struggled to stay on task, get anything done.  Her thoughts would flit from one thing to the next in a sort of chaotic stream of consciousness.  She thought that was normal.  She didn't know there was another way to think.  Although the process was frightening, once they got her on a dose of medication that worked for her, she said it saved her marriage and her relationship with her kids.  It also gave her confidence she had never had before.  She could get through her day and accomplish way more than she ever had before because she could remember what she needed to do and stay on task long enough to do it.  She wished there had been an option like that for her High School years.  She was always made to feel like a failure, a bad person, for forgetting assignments, getting dates mixed up, having a hard time sitting still, having a hard time not talking, etc.

 

On the flip side of that coin, as I understand it there can be consequences of using meds with a child as young as yours.  I would absolutely do extensive research, talk with your doctor, as a LOT of targeted and informed questions and ponder this long and hard before making that leap.  Perhaps there are environmental changes that can help to make the situation at home more manageable while you work through this process.  Have you read any ADHD books?  Anything on how to organize and structure an ADHD child's day?  What assessments has he had?  Could there be any sensory or auditory issues compounding the problem?

 

:grouphug:  :grouphug:  :grouphug:   Huge hugs.  I know this is a really hard place to be.  Talk to your doctor.  Talking will give you more information.  Don't feel guilty about asking.  You are researching what is best for your child.  That's a good thing.  Making an informed decision is much more effective than an uninformed one.  Good luck and best wishes.

[PinkyandtheBrains.]

 

 

Ask your doctor.

 

I have two with ADHD (3 if you count DH)

 

It won't "fix" everything. But it's one more tool to help. My boys were thrilled at the difference meds made in their ability to do the things they need to do and the things they WANT to do. We also work hard on developing better organizational and coping skills they can use for the rest of their lives. It is easier to master those skills with meds, before possibly trying without.

 

Ideally the doctor will refer you for a full evaluation to rule out all other possible causes of the same behaviors.

[Storygirl]

DS11 started meds at age nine. I thought he had ADHD from a young age but was hesitant to try meds and had not sought a diagnosis. Because we were homeschooling, I thought it best to just manage things as best as we could at home. To be honest, though, it was rough going. And it was hard on me to be providing external structure and regulation for him 100% of the time while also handling all the other things that go along with being the homeschooling mom of multiple kids.

 

Things came to a head that year that he was nine, and it became obvious that it was time to seek help. It was a slow journey toward trying meds -- we went to a psychologist and didn't start meds until about eight months later. The psych really helped us work through the underlying issues until we came to a point where we thought it was right to try meds. Then we worked with our pediatrician to find the right med, and it took many months and several trials of different meds and different dosages before we found what was right for DS.

 

The medication is extremely effective for DS. I'm sorry that we didn't start it sooner. It is not a cure all. We still have issues -- his attention, impulsivity, and executive function issues don't go away when the meds are in his system, but he is able to regulate himself much better emotionally, focus on tasks, get along with others, listen to instructions, and accomplish his schoolwork in a much better way. Having DS take the meds also helps me be a better mom, because I am not constantly in a state of stress and chaos.

 

I think it's a great idea to talk to the pediatrician. Our ped didn't see the ADHD in DS when I first began bringing it up to him, because DS was able to sit quietly during the doctor's appointments. It just wasn't our experience that we could say that we thought DS had ADHD and the pediatrician was willing to start him on meds. The pediatrician didn't even offer to test him; the psychologist is the one who did that initially, before the ped got on board. If I could do it over, I would politely insist on ADHD screening, even if the pediatrician didn't see the need.

 

You might want to ask the pediatrician about a referral to a psychologist as well as whether the doctor thinks you should try meds. We found our psych to be a big help in seeking diagnoses, teaching DS relaxation and self-regulation techniques, and talking through all of our options for meds, schooling, behavior, etc.

[Garga]

My DH started using meds about 5 years ago and said it was wonderful. He could focus for the first time in 4 decades.  He's been using meds consistently ever since.

 

When my dh saw how helpful it was to him, we let my son use them too.  My son immediately noticed a difference. 

 

Getting the meds and using them was easy.  The doc gave us a med and the dosage and med worked right away.  My son was a bit emotional that first week, but it settled down after that.

 

However, I have a few friends who struggle to get the right meds and dosages.  I've heard of people who feel worse on the meds and so it's not worth using them.

 

It's individual.  I don't know if they'll start them in someone who is only 6.  My son was 8 or 9.  His adhd was having a huge impact on his ability to learn and was starting to give him self-esteem issues because he was always being corrected for his wild behavior and he just Could Not Stop. It was a constant struggle that people who don't have ADHD kids just can't understand.  "Oh, he's being a little boy!"  No. There's a difference.  As a parent you can tell.  It's just Different.

 

That doesn't really answer your question other than to say that if they work, it's soooo helpful.  If they don't, you might have a longer journey ahead of you. And then there are always risks involved with medicines that you'll have to think about and come to grips with on your own.  (Long term and short term side effects.)

Edited January 11, 2016 by Garga

[rmtzc2009]

We have a long history of tweaking ADHD meds. DH and all three DS have ADHD.

 

We just put DS 6 on meds. From what the Dr said 6 is the youngest that they will start them. I'm not sure if that's her preference or based on medical protocol. DS has had a full Neuro-psych exam at 3 1/2 as well as a minimal exam at 6. Both confirmed ADHD.

 

DS6 was significantly impacted. His behaviors were such a strain that I was not able to homeschool him this year. He never stopped moving, jumping, bouncing, talking....you get the idea. The biggest factor for us was the impact socially. He was SOOOO focused on his silliness or his own ideas that other kids most often wouldn't play with him. His school work had to be built around movement and seatwork lasted a minute or two.

 

The first med we tried is working wonderfully. He's making quick gains with his school knowledge, he's pleasant to be around, I'm not exhausted from the constant chasing and correcting. All in all we made the best decision for HIM. DS has NO side effects.

 

DS 12 started meds at 8 and we had such a bad experience that I swore I'd never put my kids on meds. (Then I had my youngest guy!!). Ultimately, we felt he did need them. Again, his biggest impact was academics and school. Around the age of 11 we tried again. All in all I believe he tried six meds. Again, we finally found one that is working well. His only side effect is not being hungry. I have to remind him to eat/snack frequently and we monitor his weight.

 

DS 8 tried one med and its working great.

 

DH tried 5 meds and I'm not sure he's done trying to find one that works.

 

All that to say, meds can make a night/day difference in SOME kids. Of course, given, that they are on the right med and dose that works for their body. I shared all of my families stories to show that it's not always an easy road but its not always a hard road either.

 

Best of luck to you. I encourage you to work with a doctor you highly respected and trust. When in doubt get a second opinion.

 

Blessings,

Melissa

[Ellesmere]

Can anyone share their experiences with ADHD medication? We have a Dr appointment on Wednesday and I am working up the nerve to ask about medication. Part of me thinks we homeschool so we can accommodate him, why would he need medication? The other part of me thinks I can no longer handle that he does not know how to simply walk accross the room or sit on a sofa. He is 6 and acts like he is 3. Worse, my 2 year old is picking up these behaviors. And I can't have them both doing it. Developmentally I doubt my younger son has ADHD, he is just at that stage where he wants to do everything his brother does. I can control my older one, one on one,but even seeing his brother is distracting enough to push him into hyper impulsively. I want to ask about medication, but part of me feels like I am failing if I do, and I need to get over that part. Typical consequences don't seem to affect him.

Posting from the POV of an adult with ADHD that was not treated as a child -- If a parent already had an evaluation (and I'm not sure if your child is diagnosed) asking about medication is not wrong or a failure if you are trying to help your child & family.

 

If your motivation is to help him have a better life, a better education, and better relationships, then you are doing what you need to do. If you are looking for medications to control him, I would consider the advice you are being given here. Get an eval if you haven't. Talk about coping strategies, building executive function skills, consider some counseling and ask for resources to learn how to love and parent a child with this condition. I've had to readjust my expectations a lot over the years and remind myself of the need to take frequent breaks but not interrupt when focusing actually occurs, and to get moving more.

 

(Assuming you even need to learn about those things-- but I don't know you. A lot of what I'm saying is what I would go back in time and tell my parents, who did the best with what they had for resources, but they didn't have much when I was a kid.)

 

Medicating helps me tremendously. But if the ideal functioning level could be compared to a bright sunny day, I would say that *without* meds, I function like a dark and stormy night. With them, I function like a partly cloudy day. I can only imagine earlier intervention and dedicating more time to organization skills, and probably readjusting the dose/switching would get me closer to feeling like my focus and productivity is "normal".

 

I think that even if I had gotten earlier help and did everything outside of medication perfectly, that I might very well still need it. The puzzle, for me, is not complete without it. It's like dealing with asthma -- I encase my pillows and mattress, avoid certain animals, don't smoke, put an air filter in the bedroom but I carry my inhaler and I used to take maintenance meds when I was in an environment that I couldn't control enough and my attacks increased. Right now my asthma treatment puzzle is complete without daily meds but I'm monitoring if I need it again based on some environmental things I can't control. And when my parents were looking at my treatment plan, part of the puzzle was accommodations and learning EF skills, but they felt the medication for ADHD was as necessary as an inhaler was for my asthma. But that's just me, and we didn't have a lot of resources at the time.

 

As I said, I don't know if there's a diagnosis, but if there is and even if you are already doing all the interventions you can -- I agree that medication can be overused and that homeschool can address some of the issues with school settings/ADHD. I also agree some traits can be assets in a different setting and finding the right setting rather than medicating can be better. But I have to drive and I have to function in the routines of daily life that I cannot shake off.

 

If my kid needed medication -- I cannot guarantee they can always live a more tailored-to-them life and get to work in whatever environment suits them. So yes, I'd ask about it and not consider it a failure at all. Yes, I do think investing time in rethinking the environment is key. The thing is -- it is just hard. Some things might work for one kid or most kids but that doesn't mean it works for all. Medicating one month doesn't mean you do it the next, and stopping them doesn't mean stopping forever, either. Good luck and hope you find some solutions.

 

[kbutton]

I don't have a lot to add to the pros and cons that hasn't been said. We've had a positive experience with meds. We found the right one for my son on try #2. Dosing took a little longer. We use a generic, and we did find that one generic is fantastic and another generic makes him anxious--that was pretty wild, but it became clear on day 5 or so of that particular version--the anxiety just built up to a head. When we went back to the other generic, the anxiety was gone. I know that some people worry about anxiety in general with stimulants (we did too). We actually had a decrease in overall anxiety because a huge chunk of the anxiety came from my son not being able to control himself. He knew it, and his problems made him anxious. We use a short-acting stimulant with a boost in the afternoons. The boost is optional depending on what we're doing, but it does help a lot when it's needed. It makes our evening better as well. 

 

I knew a little boy like your son--he was the most hyperactive preschooler I'd ever met. He needed 1:1 attention to do anything productive at all, and he spent most of his time crashing, running, etc. We didn't see the family for quite some time, and then I saw them when I was out and about a couple of years later. That child was calm and in control of himself. It was stunning how differently he behaved. That's when the mom told me that they'd tried meds. It encouraged me to try meds with my own son later, though his big thing is distraction and impulsivity. My son's hyperactivity actually grew with age, which I hear is atypical. But the meds are working for that too. We are very happy to have the tool in our box. 

 

For those that are sharing their adult stories, thanks! That's relevant to us right now too, and I appreciate hearing what it's like to take meds as an adult.

[wendyroo]

I will say that the parents I know who use meds with their children took a long time to find the right med and the right dosage.  It was a difficult process involving diligence and working closely with medical professionals over quite a bit of time.  With one of my closest friends they ended up with a slow release patch.  Their daughter puts the patch on in the morning, is able to function through her academics and extra curriculars then removes it hours before she has to go to sleep.  Her grades improved significantly, she began to make real friends, her confidence went up and her relationship with her siblings improved.  It took nearly a year to get to the right med and the right dosage.  In that time her weight plummeted dangerously, she had other health issues and they were very discouraged and feared they had made a bad decision.  

 

This is our experience.  DS was put on anti-anxiety meds right when he turned five, but it took well over 6 months to figure out an effective dosage.  After that the psychiatrist wanted us to wait 6+ months before we started to try some ADHD meds.  Since then (starting right around when he turned 6), we've tried 4 meds in the last 9 months and none of them have worked at all (and 3 of them caused side effects such as weight loss and extreme sleepiness).

 

At this point, there are only two reasons we are persistently staying the course:

1) His current behavior is just unendurable for all of us.  He tries to write a sentence, but loses focus between each letter.  He can't sit for a meal.  He still impulsively writes on walls.  He can't keep his hands to himself.  He can't play with peers.  He gets distracted and can't follow a one step direction (ie Go put on socks).  

 

and 2) The anti-anxiety meds have proven to be a MIRACLE.  It took a long time to get them right, but they have vastly improved his quality of life.  Several months after we had gotten the dosage right, we stayed with my parents for a week.  My mom commented about DS that for the first time in his life he seemed happy.  For his first five years he could never really relax and enjoy life because he was always tense and worried and braced against all the unknowns.  You would still never call him a laid back, easy going kid, but at least now he can cope with life.

 

Our struggle to find effective ADHD meds is made harder because many of the options do not play nicely with anti-anxiety meds.  We'll keep looking, though, because we've seen the profoundly positive effects the anti-anxiety medication has had.  It has proven invaluable in taming DS's brain chemistry and allowing him to learn and grow and thrive.  We are hopingthere is an ADHD medication which will be equally beneficial...if we just keep looking.

 

Wendy

[PeterPan]

You're not a failure to ask for meds, absolutely not!  You're doing the right thing asking for help!  But hopefully your ped is going to ask some more questions and dig, because you may need an OT eval or a referral for a psych eval.  That cross the room or sit on the sofa thing sounds more like compliance (ODD, ASD, whatever).  You could even have hearing loss.  Meds are fine, and asking for help is the right thing to do.  I'd just encourage you to ask for REFERRALS at this appointment.  Don't assume it's ADHD or *just* ADHD, and don't stop with the ped diagnosis. A good psych eval can give you information on how to teach with him better and work with him better.  

[PinkyandtheBrains.]

You're not a failure to ask for meds, absolutely not! You're doing the right thing asking for help! But hopefully your ped is going to ask some more questions and dig, because you may need an OT eval or a referral for a psych eval. That cross the room or sit on the sofa thing sounds more like compliance (ODD, ASD, whatever). You could even have hearing loss. Meds are fine, and asking for help is the right thing to do. I'd just encourage you to ask for REFERRALS at this appointment. Don't assume it's ADHD or *just* ADHD, and don't stop with the ped diagnosis. A good psych eval can give you information on how to teach with him better and work with him better.

 

Agreeing.

 

I have two with ADHD, but thanks to full evaluations I know they both are very different I how it affects them.

[ashamama]

Thanks for all the comments! To answer some questions, yes he is Dx'd. In fact he has a few dx. He has SPD, ADHD, CI and is gifted. The poor kid has so much going on. And I can see him struggle with his body not being under control. He has been in OT for 1.5 years to address sensory issues. We had him do therapy for his eyes. And through it all his ADHD behavior is getting worse. Namely because as he gets bigger he thinks he can decide more what to do. But the biggest problem is that he is impulsive to the point of not being safe. I worry about him constantly when we are out. And it has driven a wedge between him and his peers. It nearly broke my heart last week watching him after co-op. The kids were playing and he was hiding under chairs. He is quirky so I figured that was just him. But when I told him we were leaving, he asked me if he could play more. And until then I didn't realize that he thought he was playing. I figured he was just hiding, but he thought that hiding under the chair was somehow part of playing with kids who didn't know he was there. He has trouble with peer games when there are no set rules. So board games he can manage, but pretend games are beyond him. I could see in his face he wanted to be part of the group, but couldn't figure it out. And he has trouble knowing where to pay attention with sports. He got a mild concussion last season in baseball because the ball hit him in the head because he was not focusing on the ball when they said "baseball ready" and "ball on tee." He has a hard time participating effectively in co-op because he is either non-stop talking or touching things he shouldn't. And he falls out of his chair often from the moving. So while I can adapt our routines to still have good days schooling at home, I can't adapt all of his environments for him. Even though he has me for a teacher, he still does need regular coping skills. And you can look at him and just see in his eyes sometimes that he just feels so out of control. And I hate punishing him for behavioral things when he seems unable to control it. (To clarify I do discipline for behavior issues but it is as affective as talking to a wall. I think he needs to be more in control of his body before it really hits home.) I am the only person who knows how to set him up for successful events whether it is a social interaction, or school day, or shopping trip. And even then, his interactions are getting worse not better because his will is stronger, but his self control is not. It would be nice for him to not need to be so dependent on me, and I think he clings so much because of how out of control he feels typically. And diet, exercise, activities and therapies have seemed to only do so much. He has come a long way, but he could go so much further.

[ashamama]

 

1) His current behavior is just unendurable for all of us. He tries to write a sentence, but loses focus between each letter. He can't sit for a meal. He still impulsively writes on walls. He can't keep his hands to himself. He can't play with peers. He gets distracted and can't follow a one step direction (ie Go put on socks).

 

 

This is my guy a lot too. I anticipate leaving the house half an hour before necessary because just getting ready is a struggle for him and he gets so distracted from the point of ready-to-go to getting to the front door. Then often has to go back.

[Jnma]

My son was diagnosed ADHD at 6.5. The doctor recommended meds. We opted not to medicate at that time, because I felt I could change his environment to suit him. We are homeschoolers, blah, blah, blah. I tried exercise, supplements, more time outdoors, school accommodations, more structure, etc. Everything helped- a little. He had a full neuropsych eval last year (at 9 yo) and the doctor was pretty clear that he wasn't able to succeed in his life, because he couldn't get out of his own way. It felt like he was not learning anything. He was rarely quiet, always touching something, and defiant about school.

 

We decided to try meds after that. We are lucky that the first med worked. My son even remarked on the first day that he could read so much better because the words weren't moving around so much. It has made a huge difference in his ability to focus and the defiance is nearly gone. Some days if he's really acting up, I realize that I've forgotten to give him his medicine. He gets dry eyes and loses his appetite for lunch. Those are his only side effects. It has been worth it for us, but I know every one is different. AND, now that he can focus much better, we spend a lot of time working on executive function with the hopes that meds won't be forever.

 

Good luck.

[OneStepAtATime]

Thanks for all the comments! To answer some questions, yes he is Dx'd. In fact he has a few dx. He has SPD, ADHD, CI and is gifted. The poor kid has so much going on. And I can see him struggle with his body not being under control. He has been in OT for 1.5 years to address sensory issues. We had him do therapy for his eyes. And through it all his ADHD behavior is getting worse. Namely because as he gets bigger he thinks he can decide more what to do. But the biggest problem is that he is impulsive to the point of not being safe. I worry about him constantly when we are out. And it has driven a wedge between him and his peers. It nearly broke my heart last week watching him after co-op. The kids were playing and he was hiding under chairs. He is quirky so I figured that was just him. But when I told him we were leaving, he asked me if he could play more. And until then I didn't realize that he thought he was playing. I figured he was just hiding, but he thought that hiding under the chair was somehow part of playing with kids who didn't know he was there. He has trouble with peer games when there are no set rules. So board games he can manage, but pretend games are beyond him. I could see in his face he wanted to be part of the group, but couldn't figure it out. And he has trouble knowing where to pay attention with sports. He got a mild concussion last season in baseball because the ball hit him in the head because he was not focusing on the ball when they said "baseball ready" and "ball on tee." He has a hard time participating effectively in co-op because he is either non-stop talking or touching things he shouldn't. And he falls out of his chair often from the moving. So while I can adapt our routines to still have good days schooling at home, I can't adapt all of his environments for him. Even though he has me for a teacher, he still does need regular coping skills. And you can look at him and just see in his eyes sometimes that he just feels so out of control. And I hate punishing him for behavioral things when he seems unable to control it. (To clarify I do discipline for behavior issues but it is as affective as talking to a wall. I think he needs to be more in control of his body before it really hits home.) I am the only person who knows how to set him up for successful events whether it is a social interaction, or school day, or shopping trip. And even then, his interactions are getting worse not better because his will is stronger, but his self control is not. It would be nice for him to not need to be so dependent on me, and I think he clings so much because of how out of control he feels typically. And diet, exercise, activities and therapies have seemed to only do so much. He has come a long way, but he could go so much further.

:grouphug:  :grouphug:  :grouphug:

[PeterPan]

Thanks for all the comments! To answer some questions, yes he is Dx'd. In fact he has a few dx. He has SPD, ADHD, CI and is gifted. The poor kid has so much going on. And I can see him struggle with his body not being under control. He has been in OT for 1.5 years to address sensory issues. We had him do therapy for his eyes. And through it all his ADHD behavior is getting worse. Namely because as he gets bigger he thinks he can decide more what to do. But the biggest problem is that he is impulsive to the point of not being safe. I worry about him constantly when we are out. And it has driven a wedge between him and his peers. It nearly broke my heart last week watching him after co-op. The kids were playing and he was hiding under chairs. He is quirky so I figured that was just him. But when I told him we were leaving, he asked me if he could play more. And until then I didn't realize that he thought he was playing. I figured he was just hiding, but he thought that hiding under the chair was somehow part of playing with kids who didn't know he was there. He has trouble with peer games when there are no set rules. So board games he can manage, but pretend games are beyond him. I could see in his face he wanted to be part of the group, but couldn't figure it out. And he has trouble knowing where to pay attention with sports. He got a mild concussion last season in baseball because the ball hit him in the head because he was not focusing on the ball when they said "baseball ready" and "ball on tee." He has a hard time participating effectively in co-op because he is either non-stop talking or touching things he shouldn't. And he falls out of his chair often from the moving. So while I can adapt our routines to still have good days schooling at home, I can't adapt all of his environments for him. Even though he has me for a teacher, he still does need regular coping skills. And you can look at him and just see in his eyes sometimes that he just feels so out of control. And I hate punishing him for behavioral things when he seems unable to control it. (To clarify I do discipline for behavior issues but it is as affective as talking to a wall. I think he needs to be more in control of his body before it really hits home.) I am the only person who knows how to set him up for successful events whether it is a social interaction, or school day, or shopping trip. And even then, his interactions are getting worse not better because his will is stronger, but his self control is not. It would be nice for him to not need to be so dependent on me, and I think he clings so much because of how out of control he feels typically. And diet, exercise, activities and therapies have seemed to only do so much. He has come a long way, but he could go so much further.

Ok, so yes it's time to get the meds.  Are you getting any behavioral help?  There are a lot of behaviors that overlap when you're in that really challenging ADHD, turns into ASD, kind of region, which is where you are.  No matter what, you need some help.  I think it's an issue that *you* are the only one able to make things happen with him.  That means you really need to be having that discussion about getting the right tools for this, not just for you, but tools that someone else can do with him to help these skills generalize.  So that ought to be on the table, like whether you should go to an autism clinic and get a longer eval just on that question, whether you can get qualified for a behaviorist (with your insurance), etc.  

 

But yes, go for the meds, my goodness.  The only failure would be if you stopped and hid your head in the sand.  You're not doing that.  You've got a hard situation and you're trying to sort it out, step by step.  You're doing the right thing!

[Guest]

nm

Edited February 10, 2016 by Guest

[sbgrace]

My son started trying meds (non-stimulants) around age 8. When each one didn't work, we would just stop for a while. No one wanted to try stimulants with him for various reasons. This year (age 11), we tried short acting Ritalin. Once we got to the correct dose, which took a while, it does help him quite a bit. He's much  less impulsive and hyperactive. He concentrates slightly better, though other issues still get in the way of that. He is better able to learn and, more important for me, function in outside settings.

 

A child's behavior can certainly impact a sibling's behavior in my experience, so that is something to consider. My boys do play off each other in ways that bring out negatives. The other thing you might think about is that behaviors can become habitual/reinforced habitually in my experience. It's harder to undo patterns.

If I could rewind knowing the Ritalin would work without negative effects, I would have started a long time ago.

 

ETA: I had written this after reading your original post. I just saw the follow up description. That is my son too. :grouphug:  Peers will get increasingly intolerant as he ages. He may need some direct instruction in play and joining skills. The Unwritten Rules of Friendship book is the best I've seen for that. That direct instruction will be easier to implement if you do what you can to temper the ADHD stuff in my experience.

[Targhee]

I have 3 with ADHD - two combined, one inattentive - plus DH.  Here's my take away message:

 

ADHD meds won't make your kid smarter, neater, more serious, or more compliant.   What it will do is give them them ability to focus longer so that they can learn/show what they know, get a job done, not feel as compelled to bounce off the wall or from this to that, and to finish more of what they've been directed to do before losing focus again.

 

ADHD has had it's most significant effect (for my kids) in the realm of social relationships.  It has allowed them to do a better job of giving and taking in conversations (and with toys, taking turns in a game, waiting to be called on in a class, etc).  This in turn means better social relationships with a) kids who really don't understand - especially the 8-12 year old crowd, and b) adults who really should understand but act worse than kids.

 

My kids on meds are still more distractible than their peers, still act younger than their peers in many (most) social ways - the general rule is 30% of their age younger, so 10 year old acts like a 7 year old - and still have a difficult time with many executive functions.  But all those things are better than not on meds.

 

ADHD meds do not come without side effects.  My kids are generally not as brightly happy when on their meds.  One can get rather surly.  BUT, that happiness fades fast when they are constantly in trouble or being corrected or chided by peers. The meds help them maintain some dignity and positive self image.

 

Different meds work well in different bodies.  We've tried different types, and two of my kids take the same med now, and the third takes a different one.

 

Some kids' ADHD is mild enough that the cost-benefit of meds (side-effects vs help) isn't worth it.

 

Environmental factors play an enormous role in "stabilizing" ADHD behaviors - routine, exercise, high protein diet, routine, regular meals and snacks, consistent rules and enforcement, routine, simple organizational helps, routine, and routine all make as significant an impact as meds.  Different impact, but still significant and you need them both. Especially the routine thing ;-)

 

Best wishes - these children are unique, and if you can help them work around their quirks your child just might change the world for good one day!

 

ETC: I just read the later post about him being 2e.  My kids are too.  That makes the social element even harder - as a friend put it to me of her own son, "you just have to find someone who quirks the way they quirk."  Homeschooling decrease the base exposure rate (without SIGNIFICANT EFFORT) to different kids, so finding the person who "quirks the way they quirk" is hard.  One of my kids has, after living here 4 years and being very active in the HS community, attending multiple co-ops, lots of extra curricular... One of my others is a social go-getter, and she engages with people more easily but still doesn't have close friends.  My boy, well, he has a hard time. All my kids have the most success with kids younger and older, and the hardest time with peer-age relationships.  Cousins are golden, if you have any.  At any rate, best wishes.  Maybe our kids will bump into each other one day and find they quirk the same way.

Edited January 12, 2016 by Targhee

[Tiramisu]

Ok, so yes it's time to get the meds.  Are you getting any behavioral help?  There are a lot of behaviors that overlap when you're in that really challenging ADHD, turns into ASD, kind of region, which is where you are.  No matter what, you need some help.  I think it's an issue that *you* are the only one able to make things happen with him.  That means you really need to be having that discussion about getting the right tools for this, not just for you, but tools that someone else can do with him to help these skills generalize.  So that ought to be on the table, like whether you should go to an autism clinic and get a longer eval just on that question, whether you can get qualified for a behaviorist (with your insurance), etc.  

 

But yes, go for the meds, my goodness.  The only failure would be if you stopped and hid your head in the sand.  You're not doing that.  You've got a hard situation and you're trying to sort it out, step by step.  You're doing the right thing!

 

I agree with OhE, too. I'd go for the meds for safety issues. But I would also make sure you go for an np eval because of all the issues you describe.

 

About the words, or print, moving on the page. One of my dd's complained about that. And I will tell you, some people seemed to suggest it might be attention-seeking. She was screened by a very good covd optometrist who acknowledged there seemed to be problem but not an eye muscle issue. With the np eval, we found out that dd has significant visual processing weaknesses. That affects academics but even more, how she interacts with the world around her. She cannot process complex visual information well and I think that can also contribute to social difficulties. It also explains why she's had more difficulty as she's got older, because life and expectations, socially and academic, increase over time. It also tells us she would benefit from specialized instruction.

 

The np told us we could use a lot of the same recommendations as you would for ADHD, but dd's difficulties are more than we suspected, and I think it will help us long-term by having that figured out. ADHD medication has helped her but there are still some challenges. It gives her the ability to stop and think. She also gets more work done when she's on them, but I still can't ask a huge amount from her and I still have to sit beside her and constantly re-direct her.

 

We have tried three different meds at different dosages. The first made her sleep for two days--a stimulant! The second seemed to give her headaches and vague discomfort, maybe anxiety or too much stim. Then we tried the most recent med. We tried to increase the dose and the side effects (headache) didn't seem worth it, so we're down again. This is the kind of thing you might expect. It's a little frustrating but not as overwhelming as I thought it would be.

[ashamama]

Thanks for all the input. Doctor is on board with meds. We started process which was filling out papers about stimulant practices etc. We are moving forward. I have long suspected that he is ASD. I don't think we will get a Dx until he is a teen, because I can't seem to find the right dr to see ASD with his other things too. They seems to treat ADHD as a simple set of symptoms and the dx is so informal. I don't know what else they would do with a Dx of ASD being that he is already in OT. I have looked into social skills classes, but they were very expensive in my area. I am able to get him through his school work well, though he gets distracted doing it, so I hope it will go a bit smoother. But it is the social relations with peers and adults I hope to really help. He does have a cousin who quirks the same way...they are both so into Nintendo (like mine could give you a biography of the founder and is learning programming and Japanese to get closer to it, so beyond just liking games) and they get on so well! We are lucky that our home school groups are so accepting, he can pass usually among these kids for everything except seat learning and pretend play....structured activity he can pull off. We have the most trouble with sports. With kids who are in school all day. Those are the ones who are least tolerant and call him things like goofy and push him around. Or ask him things in mean ways. The home school kids even if they don't get him, they don't question who he is. I will look for that book. We have tons of books on emotions, manners, behavior, and social interaction though we found less good stuff on the last one. It will be better though if he can meat them in the middle to form bonds though. There is a difference between bonding and being tolerated.

 

ETA: the ADHD dx feels incomplete. I mean they dx these set of symptoms here with the SPD symptoms seperate. When I keep describing it to my mom, she kept asking, "but he's not autistic?" Because we. You add the SPD together with the ADHD there is so much overlap with ASD. I've heard some people say ADHD and ASD are both on the same spectrum, (though I was never sure if they meant both spectrum disorders but maybe different spectrums?) But if they are part of the same thing, I never get what makes him not ASD (perhaps aside from formality of finding the right dr.) But I guess none of that changes the symptoms that are still ADHD symptoms. My husband has ADHD without the SPD. I think he gets the SPD from me, though I had no formal dx, just a prickly childhood. So I suppose it just happens like that.

Edited January 14, 2016 by ashamama

[PeterPan]

If you got the ASD diagnosis, maybe insurance or child medicaid or whatever would kick in for social skills?  The ps can run a pragmatics eval and qualify him.  Some states have scholarships and some schools give hs'ers services.  I don't know, just rummaging through ideas there.  

 

Yes, the ped ADHD diagnosis is not as informative as a full psych eval.  That's more money though.  I can see why you'd rather have services than an eval.  Another way to handle that is to go to a university autism clinic for the eval.  They'll do *everything* (OT, psych, SLP, etc.), and it's usually a terrific price compared to private.

 

A good reason to do the evals is to get the right words for him to use about himself.

 

As far as the social, you might start another thread when it's on your mind.  It's certainly something we can all stand to discuss.  :)

[Tiramisu]

Thanks for all the input. Doctor is on board with meds. We started process which was filling out papers about stimulant practices etc. We are moving forward. I have long suspected that he is ASD. I don't think we will get a Dx until he is a teen, because I can't seem to find the right dr to see ASD with his other things too. They seems to treat ADHD as a simple set of symptoms and the dx is so informal. I don't know what else they would do with a Dx of ASD being that he is already in OT. I have looked into social skills classes, but they were very expensive in my area. I am able to get him through his school work well, though he gets distracted doing it, so I hope it will go a bit smoother. But it is the social relations with peers and adults I hope to really help. He does have a cousin who quirks the same way...they are both so into Nintendo (like mine could give you a biography of the founder and is learning programming and Japanese to get closer to it, so beyond just liking games) and they get on so well! We are lucky that our home school groups are so accepting, he can pass usually among these kids for everything except seat learning and pretend play....structured activity he can pull off. We have the most trouble with sports. With kids who are in school all day. Those are the ones who are least tolerant and call him things like goofy and push him around. Or ask him things in mean ways. The home school kids even if they don't get him, they don't question who he is. I will look for that book. We have tons of books on emotions, manners, behavior, and social interaction though we found less good stuff on the last one. It will be better though if he can meat them in the middle to form bonds though. There is a difference between bonding and being tolerated.

 

ETA: the ADHD dx feels incomplete. I mean they dx these set of symptoms here with the SPD symptoms seperate. When I keep describing it to my mom, she kept asking, "but he's not autistic?" Because we. You add the SPD together with the ADHD there is so much overlap with ASD. I've heard some people say ADHD and ASD are both on the same spectrum, (though I was never sure if they meant both spectrum disorders but maybe different spectrums?) But if they are part of the same thing, I never get what makes him not ASD (perhaps aside from formality of finding the right dr.) But I guess none of that changes the symptoms that are still ADHD symptoms. My husband has ADHD without the SPD. I think he gets the SPD from me, though I had no formal dx, just a prickly childhood. So I suppose it just happens like that.

 

We met with a developmental pediatrician who I rather liked and this is how she described ADHD and ASD (especially the Asperger type). She said each are only a label to describe a collection of various symptoms; it's not something there's a perfectly objective test for. If you have enough of the symptoms, to a significant enough degree, it will warrant labeling it. With ADHD and ASD there are some symptoms that are particular to one or the other,  but there are also a whole lot that overlap. She said you can see different specialists and you might get one of the labels, or both, or neither, because there is some degree of subjectivity.

 

The DP recommended we see a specific neuropsych who she believed would be very good at helping us figure things out, to sift through everything, especially the more subtle stuff that's not particularly visible, IYKWIM. So even though the DP was very experienced and highly regarded she believed another specialist, the NP, with the tests she could do, would be better to get a definitive diagnosis.

 

In the end, the NP decided on a dx, not just by the symptoms, but because of their their impact on life, and, she really emphasized, because of the need to take them into consideration for decision making in terms of education and even a future career.

 

Just grabbing this from the Mayo Clinic website:

 

"ASD includes problems with social interaction and communication skills and restricted, repetitive patterns of behavior, interests or activities that cause significant impairment in social, occupational or other areas of functioning."

 

So for ASD, you need two things and you need them to the level that they affect functioning significantly: (1) the social and (2) the repetitive behavior/restricted interest/activity stuff, which I believe can include SPD. But how does that differ from some cases of ADHD, right? Especially when social delay and SPD can be present in ADHD. It's tough to sift through.

 

The NP we used was also very clued in to issues of anxiety and depression because, in her experience, that is very tied in to ASD. I think she thinks they are even more of an issue than they are with ADHD.

 

[Mom28GreatKids]

Our DP said that he will not dx ASD without at least either social delay or repetitive behavior. He said non verbal plus sensory is not enough for him. I know people are all over the place with this stuff, but I liked that he had criteria. He and the NP even left and came back in trying trigger one of those behaviors and did not get it, at all. DS is super social, super extroverted, totally holds eye contact, and has no repetitive behaviors. He does have problems with transitions, has some sensory issues, shows obvious signs of potential ADHD, and is non verbal (but gaining), so DP said no ASD signs "at this time." I guess he left the door open in case he missed something. I respect that.

[Guest]

nm

Edited February 10, 2016 by Guest

[kbutton]

This DSM V list of criteria has examples: https://depts.washington.edu/dbpeds/Screening%20Tools/DSM-5(ASD.Guidelines)Feb2013.pdf 

 

Repetitive/restrictive behavior can be complicated enough that it goes unrecognized. Or, it can be situational--my son's repetitive behaviors are mostly noises he makes, but the other quirky repetitive things he does only show up in certain environments.

 

I would have to sit down and read it again, but I think there is an either/or with restricted/repetitive behaviors OR interests? Also gifted kiddos tend to have serial interests or sets of interests. My son, for example, has a fairly decent set of interests, but it's like he has acquires them obsessively one at a time, and they have commonalities (vehicles, technology). He also doesn't really outgrow stuff. He might not play with certain things with others if they are more childlike interests, but he still loves to do more childlike things related to his interests at home and in his free time. I suspect he'll enjoy those same things when he's thirty. His interest in trucks just doesn't go away, it just gets more sophisticated and recombined with the other interests. When he was little, it was more evident--he would collect stuff or facts about stuff (he knew everyone by the make and model of their car by age 3). But yeah, he's a car/truck/train/cell phone spotter highly into technology. It's a little less obvious, but very real (as our tutors will attest).

[Guest]

nm

Edited February 10, 2016 by Guest

[Guest]

nm

Edited February 10, 2016 by Guest

[Guest]

nm

Edited February 10, 2016 by Guest

[Tiramisu]

Tough for us maybe but not for a trained professional. I wouldn't attempt to dx someone else's kid but with my own, I did enough research to know whether it was ADHD or ASD (or both) by researching the differences between the two. ADHD did not fit in our case and our developmental pediatrician (part of a clinic that also diagnoses ADHD and also prescribes meds for ADHD) never even brought up the possibility. There ARE distinct differences in social delay experienced between those that fit the ADHD label and those that fit the ASD label. Those that fit both will have the other markers for ADHD PLUS the social delay in ASD. Here's a good link from a government source:

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4010758/

 

I like that article. Thank you for linking it.

 

I think that when there are the overlapping symptoms of both, or a co-morbidity, and the ASD is at a so-called *high-functioning* level, it can be difficult even for professionals, and different professionals may disagree. At least that's what our DP expressed very clearly, and it seems that some people on the board have gone through that.

 

Then there's also the gender issue. Girls with ADHD and girls with ASD (Asperger type) can present differently than their male counterparts and their conditions can be overlooked.

Edited January 14, 2016 by Tiramisu

[Tiramisu]

This DSM V list of criteria has examples: https://depts.washington.edu/dbpeds/Screening%20Tools/DSM-5(ASD.Guidelines)Feb2013.pdf

 

Repetitive/restrictive behavior can be complicated enough that it goes unrecognized. Or, it can be situational--my son's repetitive behaviors are mostly noises he makes, but the other quirky repetitive things he does only show up in certain environments.

 

I would have to sit down and read it again, but I think there is an either/or with restricted/repetitive behaviors OR interests? Also gifted kiddos tend to have serial interests or sets of interests. My son, for example, has a fairly decent set of interests, but it's like he has acquires them obsessively one at a time, and they have commonalities (vehicles, technology). He also doesn't really outgrow stuff. He might not play with certain things with others if they are more childlike interests, but he still loves to do more childlike things related to his interests at home and in his free time. I suspect he'll enjoy those same things when he's thirty. His interest in trucks just doesn't go away, it just gets more sophisticated and recombined with the other interests. When he was little, it was more evident--he would collect stuff or facts about stuff (he knew everyone by the make and model of their car by age 3). But yeah, he's a car/truck/train/cell phone spotter highly into technology. It's a little less obvious, but very real (as our tutors will attest).

 

Yes, I think it is an either/or for the restricted/repetitive stuff. 

[Mom28GreatKids]

Right Cricket. I agree that some things are clearer at seven than at three, which I believe that is why he used language "at this time." I am OK at that time. He said that nothing really changes either way anyway- ST and OT was already in place, and he is way too young for meds if he is ADHD. So, he said keep doing what you are doing and we will reassess in a year. I am good with that. SLP is the captain of the ship for re time being. That could change in time, but for now. . .

[Guest]

nm

Edited February 10, 2016 by Guest

[Guest]

nm

Edited February 10, 2016 by Guest

[Guest]

nm

Edited February 10, 2016 by Guest

[Guest]

nm

Edited February 10, 2016 by Guest

[Tiramisu]

Actually, it will differ per individual ;)

 

Right-o. There absolutely can be restricted AND/OR repetitive behavior AND/OR interests.

[Tiramisu]

Adding also, the length of time of the evaluation and whether the evaluator actually observes the child rather than just going by the answers to the questionnaires, has a lot to do with it also. It's not easy answering those questionnaires objectively! We as parents have our own biases when it comes to our children, conscious and subconscious.

 

I really obsessed about my own biases influencing the outcome.  :001_unsure:

 

But it took the pressure off that the np wanted at least one two and a half to three hour session with dd without getting any input from me

 

And I still asked, at the very end, if she was sure the dx wasn't anything I led her into.   :blushing:

[PeterPan]

Our DP said that he will not dx ASD without at least either social delay or repetitive behavior. He said non verbal plus sensory is not enough for him. I know people are all over the place with this stuff, but I liked that he had criteria. He and the NP even left and came back in trying trigger one of those behaviors and did not get it, at all. DS is super social, super extroverted, totally holds eye contact, and has no repetitive behaviors. He does have problems with transitions, has some sensory issues, shows obvious signs of potential ADHD, and is non verbal (but gaining), so DP said no ASD signs "at this time." I guess he left the door open in case he missed something. I respect that.

You might go look at your pictures from before ST and after.  I was looking through mine, and the lack of eye contact was there before ST.  Once we start ST (weekly AND me doing multiple sessions daily with him at home), that improved.  Not perfect, but from 0 to sometimes, lol.  Social delay might be more obvious as he gets in with his peers.  Repetitive can be speech or behavioral.  In gifted kids it can be very *complex* too, like repeated behaviors.  For instance, my ds went through a stage where he ALWAYS had to untie your shoes when you helped him at the toilet.  Like ALWAYS.  Kids with ds will sometimes flick, yes.  My ds doesn't just flick.  He'll flick in patterns.  So to say I tried to provoke a behavior, that just isn't quite adequate to me.  There could be very complex patterns there.  What you might just do is watch him for a couple months and keep a log.

 

Also, not to state the really obvious, but the verbal repetitions aren't going to come out till he has enough speech to have them.  My ds had sounds, nothing for a long time, so it took a long time to get enough speech to where we were really getting the stimming via repeated speech, the echoing, etc.  Like he'd have a day of meowing, an hour of meowing, and you're like oh my lands how can someone meow THAT MUCH.  With no speech yet, you're not seeing it, kwim?  And my ds is very verbal (thanks to all that therapy and the aspergers profile), so for him verbal is where it comes out.  He has the physical, but the verbal is more for him.

Edited January 15, 2016 by OhElizabeth

[Guest]

nm

Edited February 10, 2016 by Guest

[PeterPan]

Tough for us maybe but not for a trained professional. 

Hahaha.  My kid has seen tons of psychs.  Each one has an opinion.  They know the sliver they see in their office and whatever I tell them.  If I'm having a memory blip or they go fast, they get incomplete information.  And, as Misu said, it can get really crunchy subjective.  

 

Actually, the only person I trust these days is the behaviorist.  When someone spends all day working just with ASD, working on just the behaviors of ASD, they know what they're seeing and they know how it compares to other kids with ASD.

[Guest]

nm

Edited February 10, 2016 by Guest

[Guest]

nm

Edited February 10, 2016 by Guest

[PeterPan]

There ARE distinct differences in social delay experienced between those that fit the ADHD label and those that fit the ASD label. Those that fit both will have the other markers for ADHD PLUS the social delay in ASD. Here's a good link from a government source:

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4010758/

Just found this.  Taking the time to read the article, as obviously you found some interesting things in it!

[Mom28GreatKids]

Yeah, OhE, I have thought about the speech repetition emerging as he learns to speak. We shall see. Yes it seems very complex when you add high iq into the mix. Argh. It is so overwhelming.

[Guest]

nm

Edited February 10, 2016 by Guest