Help with ADD/ADHD

[MaybeBabyMustache]

My husband & I have long suspected that our 13 year old son had ADD/ADHD (as did his teachers). We took him in for an evaluation at 5, and he was on the cusp of a diagnosis, but it was too close to properly diagnose. It appeared that things got better in elementary school (and, he did mature, of course), but now that he's closing down 7th grade, my more objective observation is that we've been in denial & the problem is just now more visible given the heightened demands on kids in middle school (multiple teachers, significant homework, lots of planning & organization, etc).

I'm feeling terrible about the way we've been parenting him to date, because it's clear that our expectations are out of whack with his skills & capabilities. He's now very insecure about his lack of ability to get good grades, remember his jacket, etc. It's not helped by the fact that he has a brother who is one year younger than him, and is very high functioning/high memory, etc.

It's been a long time coming, but we are ready to proceed with a formal diagnosis & better help & support at school. His counselor is also recommending this, so he can get the help he needs.

I have a few questions, so would love guidance from anyone who has been down this path:
-What are the next steps?  I will set up an appointment with his pediatrician, but what should I expect from there?
-Are we too late to get him the help he needs to be successful in high school & college?
-How can we help him with his confidence?
-How do we better adapt our parenting to suit him & appropriate expectations? How does this work when you are also parenting a sibling without the same issues.

[kimmarg]

I have absolutely no experience or ideas for you but I'd like to offer my support and say good job in getting your kid and your family the help you need!

[Spiffy]

No, it is not too late. I knew from a pretty early age that my son was not like other kids.  All of his gross motor skill developed late. He was a very late talker, but a very early reader. He pretty much started talking when he was reading to us at age 4. Yes, he was reading and hadn't memorized the books, we tested it. Once he started school he was fine. Super smart, really high test scores, incredible memory. Even though I knew in my heart that he had high functioning autism, I didn't get him tested. I figured that since he was doing very well in school in the GT program, why bother labeling him. Then he hit high school and things went to pot. He never turned homework in on time, even when he finished it he just didn't think about turning it in. All his papers were always a mess. Just disorganized in every way. Grades went down and I knew I needed to do something. We had him tested at our local university and they sent the result to the high school. He has high functioning autism and inattentive type ADD. Now he gets a little extra help at school. The teachers know to get his attention if they see him staring off into space...he gets a quiet room and extra time for tests if he needs it. It has helped a lot. His grade have gone up and he is happier. So yes, get your child tested!

[Scotland2016]

It's not too late! I was diagnosed last summer at 34 years old. It was such a relief. I wish I had found out when I was in middle school.

I've found this website to be an amazing resource: https://www.additudemag.com

[slb59]

We just went through this with my son. He was on the cusp of a diagnosis in kindergarten, but the pediatrician wanted to wait since it was May, and his first grade teacher was really good at motivating him, so we never followed up to say it was still a problem. He’s finishing third grade now and I’ve also been beating myself up.

It’s hard to figure out the steps, but sounds like you’ve got it started. Step one is to go to your pediatrician. Around here, that looks like an initial consultation and they give you papers called the Vanderbilt assessment scale. If you’re as close to the end of the school year as we are, you might want to google them and take them in to have his teachers fill out now so things aren’t held up over break.

Once the pediatrician gets the completed forms, they look at how parents and teachers rated the kid and use that to make a diagnosis. They can get them set up with meds and a treatment program at that point. My son has anxiety and sensory processing issues and was hearing voices, so our pediatrician wanted us to go to a psychiatrist for medication and a treatment plan. Depending on how much is going on with your son and how experienced your pediatrician is with adhd, your pediatrician might be able to handle it all.

Once you get your diagnosis, your next step is to call the school counselor and see about a 504 meeting. That lets your teachers and you talk about what works best for your son so all teachers have to follow it. For us, it’s reminding him of directions while using his name to get his attention, working with him to develop a checklist he and the teachers can use to remind him what he needs to do at transition times like switching classes, and letting him have mints or gum during tests to help him focus.

By the way, while you’re waiting, caffeine works similarly to adhd drugs. We have our son take caffeine gummies with breakfast and lunch (they wear out much faster than medication) and he, we, and his morning teacher all noticed a bit of a change. It’s not perfect, but any help at all is a huge improvement.

Good luck! It’s a lot to navigate at first, but having the right toolbox to work from with your kid makes all the difference in the world!

[Psychstache]

Hey, OP. Good on you for wanting to be sure to address these kinds of issues with your kiddo.

-What are the next steps?  I will set up an appointment with his pediatrician, but what should I expect from there?

So, there are a couple of quirks. When it comes to receiving services and supports at school, there are 2 different programs for students with ADHD:

• 504 (named after section 504 of the Americans with Disabilities Act
• Special Education (from the Individuals with Disabilities Act or IDEA)

Eligibility for these programs will depend on the degree of need the student has. If your child only needs to have certain accommodations provided, then 504 would be sufficient. If they need more specialized instructional supports, then special education would be more appropriate. These are federal law, but each state has some leeway in what interpretation looks like, so you would need to look at your state's dept of ed to get more specific information about eligibility.

In addition to getting the medical eval, I would talk to your schools counselor and/or admin to let them know what you are doing and ask to speak to their 504/sped coordinator to get more information about the evaluation process. This is a lengthy process, so you need to start soon and get the ball rolling (educational evals for eligibility can take months in my state).

-Are we too late to get him the help he needs to be successful in high school & college?

No. Special education services are mandated for all students with disabilities enrolled in public education from ages 3-21. 504 accommodations are required by law at all institutions, including colleges.

That said, the eval process can take some time so you want to push to move forward as quickly as you can. You will need a 504 plan of Individualized Education Program (IEP) in place in order to gets supports like extra time on exams and access to supports in the classroom. For testing, specific requirements for testing (PSAT, SAT, ACT) can be found on the test makers websites (such as Collegeboard)

-How can we help him with his confidence?

I think that any quality evaluation that you have done should include some form of assessment of his executive functioning skills. Current research suggests that deficits in executive functioning is at the heart of ADHD. If he is eligible, I think have a series of conversations over time about the fact that he has ADHD and that will create some unique challenges for him. Talk about the results of his assessment and what that means about his strengths and weaknesses. Talk about how the brain is resilient and malleable and that he can grow skills over time, but sometimes it will be an uphill battle. Talk about how this isn't an excuse to not be successful, but to allow himself the self-compassion that things will not come as easily to him sometimes as others.

This is a great Youtube channel (that is very kid friendly) about what it means to have ADHD and what to do about it (also a great resource for parents):

https://www.youtube.com/channel/UC-nPM1_kSZf91ZGkcgy_95Q

-How do we better adapt our parenting to suit him & appropriate expectations? How does this work when you are also parenting a sibling without the same issues.

I think get a better understanding of how the ADHD impacts him. Figure out his unique areas of strength and weakness in his profile, and tailor how you address those challenges. It make be making lists/visuals that can serve as reminders. It could be working on emotional regulation skills by teaching practicing cool-down strategies. It could be rearranging the physical environment in your house. It depends on the individual kiddo.

For siblings, I think as long as life does not become solely warped around the child with ADHD, then it will work itself out. I think a great lesson is that fair does not mean equal. My in-laws tell a story about their oldest child getting mad because her younger siblings got to have glasses after going to the eye doctor and she didn't. They had to explain that her brother and sister needed the glasses to see and she didn't, because her vision was fine. Everyone gets what they need to have access to opportunities. Much like above, it is a series of conversations over time and checking in to make sure no one feels unheard.


Here are some resources I like for parents for students with ADHD:

The aformentioned Youtube channel: "How to ADHD"
https://www.understood.org/
"The Whole Brain Child" by Siegel and Bryson
Dr. Jack Naglieri, Dr. Thomas Brown, and Dr. Russell Barkley are the researchers to follow for ADHD/Executive Functioning

You got this.

[MaybeBabyMustache]

This has all been incredibly helpful. Thanks so much for the stories & next steps. I spoke to a friend who is a high school guidance counselor yesterday, and she gave me good insight on the difference between an IEP & a 504, which was really good context. She is also helping me with some advice on math placement (my son's recommended next class for 8th grade is geometry, and we are trying to decide if he has the study skills & habits to proceed with what is realistically a double jump.)

@Psychstache - huge thanks for the resources. I will definitely be checking all of these out.

[KBecks]

At the pediatrician, you will take some surveys about your son's behavior.  Your pediatrician will likely offer ADHD drugs right away.  This is up to you whether you want to use them.  You should also look into finding a very good counselor.  Emphasis, very good. Ask around.  Drugs + counseling is considered the most appropriate treatment for ADHD.

I was not willing to accept an ADHD diagnoisis from a 15-minute doctor visit, so we had an $$$ neuropsych report done, which was 1/2 day of testing.  Five years later, we hade a second $$$ neuropsych report done, which revealed some working memory issues for our child.

Regarding drugs, we were originally on extended release capsules. They are $$$$. (Read $200+ a month.) This is ridiculous.  Just this last year we switched to a generic of one of the common drugs -- generic Ritalin. He takes it in the morning before school and from the school nurse at lunch time.  We are now running closer to $40/$50 a month, which is MUCH better.  We are easily spending $250 a month on counseling, which is why you need a great counselor, and you want that counseling to be useful. Our first counselor was kind of a waste. Our son was in peer group counseling for 2 years for more social skills and that was good and a little more reasonable. We are looking at a math tutor over the summer. 

We have tried to keep our child on the lowest effective dose possible, so he takes a lot less than other kids.  Watch for signs of side effects -- loss of appetite, poor sleep, irritability and emotional outbursts, etc.  If you are on the wrong med, there are many other meds to try, so don't settle for something that does not work well for your kid.  Ideally, your kid will feel like himself on and off the medication, with no side effects, but his attention and performance will be more suitable for classwork while on meds. 

Also check out some books.  Smart but Scattered.  There are other good ADHD books.  There is also a GREAT planner -- check out The Work Smart Academic Planner  (blue cover) on Amazon.

[silverelephant]

You are not too late, and you are not alone!  We had our son diagnosed at age 12 (almost 13) last summer.  He is now taking a slow-release generic of the medication Concerta, and that, along with the counseling we and he receive from his doctor, has helped immensely.  Not sure if we just have awesome health insurance, but this medication only costs us $15/month out of pocket.  His doctor visits cost a $30 copay.

Your story sounds so much like ours.  We asked the pediatrician about it when he was too young to diagnose, and then we just sort of...coped...for many, many years.  Things would get bad, then things would get better, then they would get bad again.  I began to realize that we were spending more energy parenting this one child than we were on our other two children combined, which wasn't fair to anybody.  But it was overwhelming to ask for help, and I had all these sabotaging thoughts creep in about it being too late, or too hard, or an indication that I was a bad mom, etc. etc.

Here are the steps you need to take:

1.  Make an appointment with your child's pediatrician and ask to discuss ADHD evaluation.

2.  Bring it up at your appointment and get a referral to a behavioral specialist.  Your child's pediatrician will most likely offer to have him step out of the room so that you can discuss the issues freely and openly.  Our pediatrician referred us to a specialist who worked at another clinic associated with the larger group.

3.  Make an appointment with the specialist.  At ours, they had us make 3 separate appointments.  First is parents only.  Second is child only.  Third is both.  My husband and I both filled out a few questionnaires, and they sent us more to give to my son's teachers.  (Which was a unique situation because we homeschool, but we do some co-op learning so I enlisted the opinions of some of those teachers).  At the parents-only appointment, I cried for the entire hour and I can hardly express the relief of finally, finally, getting our struggles out in the open and hearing that we weren't the first family to go through it. 

4.  Discuss options.  Medication seems scary, but if your doctor suggests it, they will start your child on the smallest dose possible and see how it goes.  You will check in after a week or two and stairstep up until you reach the right level.  If it's too much, you can pull it back.  My son lost a little bit of weight and we have had to pull back the dosage to bring back his appetite.  One question we had for his doctor was - is medication something he will need to take for his entire life?  Her answer was maybe, but probably not.  People with ADHD tend to be creative, resourceful, hands-on, outside-the-box thinkers.  They seek out lifestyles where these attributes are celebrated!  ADHD has a genetic component and I have realized that he totally gets it from me.  I worked in an office for about one year before becoming a stay at home mom.  Now I'm a hybrid homeschool mom and dance teacher.  My lifestyle is flexible, creative, and involves lots and lots of movement.  Our children will hopefully grow up to find an environment where their ADHD is an asset, not a liability.

This was a long response, but I want to leave you with this.  After my son started treatement for his ADHD, we saw so many benefits not only to him, but to the family.  I remember looking at my husband one day and remarking, "the kids are laughing together!  They're enjoying each others' company!"  So much of the sibling rivalry in our home was exacerbated by our child's struggle to regulate his emotions.  We never knew that was a symptom of ADHD, but it very commonly is!  Also...seeing him be able to complete his entire math homework set without a meltdown, or being able to tackle an essay by himself, had been incredible.  Up until last year, I was still having him dictate to me orally, and I would type in his work, because he just couldn't sit down and write.  The medication hasn't changed who he is, and our family is not free from all of those struggles, but the frequency and intensity of them has become manageable. 

Wishing you and your son all the best!

[A Fella from Stella]

You're obviously a loving parent, and it will be okay.

My oldest was diagnosed at 12, and I was diagnosed the same year.

I was lucky to have been unusually patient with her (think, 4 straight nights of hardcore spelling test prep; sometimes she got a 70; sometimes a 90).

At 17 she decided to try medication, and after a year decided to go off of it. Her going off of it has been harder on me to understand - that her brain is re-wiring itself.

The concern I have about the meds is that it can be tough on the liver to be processing drugs everyday.

[MrThatsDifferent]

ADD/ADHD is such a tough one. Yes parents know their kids are behaving differently, but to what extent does it deserve medical treatment is often the question. I worry too much that the drug companies are using this to push their agenda and we’re having generations of people believing they need pills to live their lives. I wonder how much of this is an American phenomenon that has now been exported globally? https://www.huffingtonpost.com.au/2014/11/24/the-global-explosion-of-a_n_6186776.html?guccounter=1&guce_referrer=aHR0cHM6Ly93d3cuZ29vZ2xlLmNvbS8&guce_referrer_sig=AQAAACBoE4hOvvGPIwcnJW5U6MMm5uGSzT0GlQtTbDmcSEPrFcN8oeIbtHZH3PoNI-k3nCdK7riCl2251XREc5YzsgciY2qcnIJHOFHBU55bxbCPFB7OKDBIlGNxyt1gKpfloJXkUxS4-ofhPfYlmNSU6aVRAlKg8tTAcX_JedzesYwA

I think it’s important for parents to have their children tested, while also exploring every treatment in the world, with drugs being the last thing if all else fails.

[MaybeBabyMustache]

@veganpoledancer - thanks so much for the reply. Really appreciate the insight & your experience. We actually have been to the doctor, have submitted all of the paperwork, & are waiting for our appt as a follow up in a few weeks. Fingers crossed that the doctor will point us in the right direction of next steps.

@MrThatsDifferent - this is also my concern. Drugs would be an absolute last resort for us

[Laura33]

You've got this.  FWIW, it's very common to beat yourself up for not taking action sooner, because once things get to the point that you realize your kid needs help, you know the signs were there for years, and you can't help but think how much better it would have been had you acted sooner.  But you made the best choice you had to make then, and you are making the best choice you have now, so you have to let that go.  In reality, a lot of kids are diagnosed in MS, because that's when the schedules get more complex, the work gets harder, and the teachers expect the kids to handle more of it on their own, with less support and less opportunity to make up mistakes.

My one suggestion is not to be so fixated on avoiding medication.  I say that because that was me, and that was why I avoided getting my daughter diagnosed for years, and once I gave in and got her on meds she became a different, happier, more relaxed kid -- she was the happy, joyful kid I remembered from before school started.  The reality was that she had no mental filter; she has extremely acute hearing, and no way to tune out all the "extra" noise.  And she's a good kid who wants desperately to comply and do what the teacher wants.  So she was working so. damn. hard. every. single. day to get it right but still getting in trouble, still missing instructions, still failing her own expectations.  The stress, the anxiety, the depression this poor kid was dealing with, just trying to behave, was overwhelming.  And she was SEVEN!

All the medication did was create that filter that most of the rest of us are born with -- it enabled her to tune out all of the stuff she didn't want to listen to.  Like giving glasses to someone who is nearsighted.  It's as if she had spent hours and hours trying to understand a movie on an airplane with crappy, scratch earbuds that could barely produce enough sound to hear every other word or so over the engine and the people, and I suddenly handed her a pair of noise-canceling headphones.  ALL of that stress faded away, which allowed her real self to shine through again.  That was the part that brought me to tears -- the realization that all of the stress and pain and drama was stemming from this one issue, and that it was so simple to treat, and that I had kept that from her for years because of my own preconceived notions.  I still consider this my biggest parental fail (well, at least tied for the privilege).

So.  Don't be me.  Do therapy, change your parenting, by all means -- that stuff is also very important.  But don't be afraid to at least try the medicines and see whether it helps your kid.

[Psychstache]

You've got this.  FWIW, it's very common to beat yourself up for not taking action sooner, because once things get to the point that you realize your kid needs help, you know the signs were there for years, and you can't help but think how much better it would have been had you acted sooner.  But you made the best choice you had to make then, and you are making the best choice you have now, so you have to let that go.  In reality, a lot of kids are diagnosed in MS, because that's when the schedules get more complex, the work gets harder, and the teachers expect the kids to handle more of it on their own, with less support and less opportunity to make up mistakes.

My one suggestion is not to be so fixated on avoiding medication.  I say that because that was me, and that was why I avoided getting my daughter diagnosed for years, and once I gave in and got her on meds she became a different, happier, more relaxed kid -- she was the happy, joyful kid I remembered from before school started.  The reality was that she had no mental filter; she has extremely acute hearing, and no way to tune out all the "extra" noise.  And she's a good kid who wants desperately to comply and do what the teacher wants.  So she was working so. damn. hard. every. single. day to get it right but still getting in trouble, still missing instructions, still failing her own expectations.  The stress, the anxiety, the depression this poor kid was dealing with, just trying to behave, was overwhelming.  And she was SEVEN!

All the medication did was create that filter that most of the rest of us are born with -- it enabled her to tune out all of the stuff she didn't want to listen to.  Like giving glasses to someone who is nearsighted.  It's as if she had spent hours and hours trying to understand a movie on an airplane with crappy, scratch earbuds that could barely produce enough sound to hear every other word or so over the engine and the people, and I suddenly handed her a pair of noise-canceling headphones.  ALL of that stress faded away, which allowed her real self to shine through again.  That was the part that brought me to tears -- the realization that all of the stress and pain and drama was stemming from this one issue, and that it was so simple to treat, and that I had kept that from her for years because of my own preconceived notions.  I still consider this my biggest parental fail (well, at least tied for the privilege).

So.  Don't be me.  Do therapy, change your parenting, by all means -- that stuff is also very important.  But don't be afraid to at least try the medicines and see whether it helps your kid.

Thank you, @Laura33. As a school psych I have seen this play out hundreds of times and this is an incredibly common scenario. Parents continue to put off considering medication and then when it happens, is like magic. ADHD medication is highly effective for roughly 80% of people with ADHD.

[silverelephant]

You've got this.  FWIW, it's very common to beat yourself up for not taking action sooner, because once things get to the point that you realize your kid needs help, you know the signs were there for years, and you can't help but think how much better it would have been had you acted sooner.  But you made the best choice you had to make then, and you are making the best choice you have now, so you have to let that go.  In reality, a lot of kids are diagnosed in MS, because that's when the schedules get more complex, the work gets harder, and the teachers expect the kids to handle more of it on their own, with less support and less opportunity to make up mistakes.

My one suggestion is not to be so fixated on avoiding medication.  I say that because that was me, and that was why I avoided getting my daughter diagnosed for years, and once I gave in and got her on meds she became a different, happier, more relaxed kid -- she was the happy, joyful kid I remembered from before school started.  The reality was that she had no mental filter; she has extremely acute hearing, and no way to tune out all the "extra" noise.  And she's a good kid who wants desperately to comply and do what the teacher wants.  So she was working so. damn. hard. every. single. day to get it right but still getting in trouble, still missing instructions, still failing her own expectations.  The stress, the anxiety, the depression this poor kid was dealing with, just trying to behave, was overwhelming.  And she was SEVEN!

All the medication did was create that filter that most of the rest of us are born with -- it enabled her to tune out all of the stuff she didn't want to listen to.  Like giving glasses to someone who is nearsighted.  It's as if she had spent hours and hours trying to understand a movie on an airplane with crappy, scratch earbuds that could barely produce enough sound to hear every other word or so over the engine and the people, and I suddenly handed her a pair of noise-canceling headphones.  ALL of that stress faded away, which allowed her real self to shine through again.  That was the part that brought me to tears -- the realization that all of the stress and pain and drama was stemming from this one issue, and that it was so simple to treat, and that I had kept that from her for years because of my own preconceived notions.  I still consider this my biggest parental fail (well, at least tied for the privilege).

So.  Don't be me.  Do therapy, change your parenting, by all means -- that stuff is also very important.  But don't be afraid to at least try the medicines and see whether it helps your kid.

I love the way you've put this.  We have experienced a lot of those same emotions, especially the guilt about not having our son evaluated sooner.  I truly think that public misconceptions about medication do parents and families a disservice.  One friend of mine put it so well when she asked, "if your child was diabetic, would you hesitate to give him insulin?"  Of course not. 

[LiveLean]

Read ADHD Nation by Alan Schwarz.

[MaybeBabyMustache]

Thanks, everyone. Really appreciate all of the comments. We received the official diagnosis last week, and it was ADHD, as expected. I'm open to trying medication, but my husband is very closed to the idea. We're working on conversations on this topic, but he was very resistant to the idea of getting him tested, and now realizes how important it is. So, baby steps & I'm hopeful that he will also do research to understand our options.

I had some really emotional moments there, but I'm so happy we have a path forward & I know this is all for the best. I'm also trying to leave behind all of my guilt & focus instead on next steps. Yesterday I was able to pick up his diagnosis letter, and drop it off at the school. I have a call with the school counselor on Friday, and school starts next Thursday. I'm optimistic that we can kick off 8th grade with a great plan.

I'm also so grateful that I've had this summer off (I'm on unpaid sabbatical), because there's been both a tremendous amount of work to get to this stage, but perhaps more importantly, there's been a lot of emotional stuff. I don't think I could have handled that with my intense job. So grateful the timing worked out, and I had the mental space to process all of this.

[charis]

Our 9-year old son with diagnosed last week as well, and he seemed relieve to have an explanation.  We haven't done anything since getting the diagnosis letter and have a follow up next week.  We did say that medication was an "if all else fails" idea to us, so I could tell that the Dr. was trying very hard not to influence our decision, though she did say that it was mostly likely going to be needed at some point.  I'm torn between (1) not wanting my child to think that pills are needed to function well and (2) knowing his almost constant struggles and realizing that medication could really help.  We will work with the school and get a 504 plan in place, of course, but the more I think about it, the more I think I should be willing to give medication a chance now (esp. after reading this thread).

[msbutterbean]

Same story here with twins, one with ADHD/Anxiety and one without. Had known for some time but wasted a few years waiting and hoping, and trying to manage it on our own.

Everyone has already shared the recommendations I would, right down to the reading list. But I wanted to underscore the recommendation to get a good, dedicated behavioral specialist. This is the step that has saved us. Our pediatrician was willing to start medication, but the conversation had a very "let's just give it a try" feeling and lacked goals and purpose. We then tried therapy on its own, but it wasn't a great fit, and without the medication component my son wasn't capable of participating. Eventually we found an MD that had left our pediatrics group a few years earlier just so he could open a behavioral practice. He is the team leader. He's a medication *expert* (we have a dual diagnosis with anxiety so there's an added dimension of drug interactions) and is incredibly perceptive, articulate, and up to date. He also had a spot-on recommendation for the type of therapist we needed, and the two of them talk regularly. Our behavioral MD has also intervened with the school when needed. All of his expertise has allowed us to focus on the at-home support since we know the medical side is in capable hands.

The downside is that this doctor doesn't take insurance directly. So we pay an annual out-of-pocket fee and then get some bit of reimbursement. And it's the same with the therapist. It's expensive but worth every penny.

I would also second the voices who say not to fear medication. This is a medical issue and there should be zero stigma around treatment.

The last bit of advice I would offer is to spend some time thinking about your own triggers and practicing how to respond when your buttons are pushed. We've made amazing progress but it has not been linear, and there are still moments of incredible frustration for the whole family. If this is at all your style, I have found great resources through a site called Teach through Love (https://store.teach-through-love.com/?mc_cid=48404ea80e&mc_eid=5add60aac1).

Good luck.