Home Alone
WHOOMP

The Stuff in the Space Between

Throughout all the hours with bouncy-voiced strangers, the weekly treks to various therapies, the years of classroom pull-outs and special accommodations, Noah never asked us why

Not surprising at first, of course, since the majority of our early efforts centered around his reluctance to talk much at all. And even though he's never been the most flexible child, there was still always that element of understanding that We Took Him Places Sometimes, And So He Was At That Place, Okay, Cool. 

Most of the places we took him were pretty fun, anyway, and full of grown-ups who played games with him the whole time. Best not to question it.

But now, the Matrix is glitching. School is not fun. School is hard. School is hard for him, in a way it doesn't seem to be for the other kids. The other kids, whom he still doesn't understand how to be friends with, or why he should even want to be friends with them, especially since they don't understand why it's so hard for him to stay calm and still at school, seem to have it easier. 

And now he wants to know why

And he doesn't just want to know why, in a reasoned conversation about IEP codes and re-evaluation years — the kind of conversation I've gotten pretty good at. He doesn't want to know during the times I've tried to initiate the conversation, using advice from books and therapists about talking to kids about special needs, when he's calm and regulated.

No, he asks when he's angry. When he's more like Sally Field in the cemetery, alternating between hollering whhhhyyyyyy at me and hurling insults at himself over a stupid homework worksheet. Stupid. Idiot. Bad. I'm no good at anything.

Words that aren't true, not even close, I have reams of paperwork and evaluations that say the exact opposite. 

But they feel true to him. And all the paperwork and ability to hold my own in IEP meetings doesn't change that, nor have they necessarily prepared me for what to say to him in those moments.

I am tongue-tied in response to those angry, explosive tears and pointed questions. What's wrong with my brain?

I just want to hug him. I want to magically patch up his crumbling self-esteem with sheer will and love and magic. I want to make it all better.

But I also just want him to stop. I want him to listen to me. I want him to sit still for 10 freaking minutes and do his writing homework, because Jesus Christ, you'd have finished 20 minutes ago if you just focused and did it. I want to stop losing my patience with him, and...crap, I just want to stop blowing this, on the most basic, fundamental level. 

And yet, in other moments, Noah can now perfectly articulate what life is like inside his skin. Sometimes he speaks in code — feeling "shy" about something means he's having anxiety from a flexibility issue; anything he calls "my ways" refers to a sensory-based problem and/or one of his stimming-like coping strategies. Sometimes he's bluntly negative and hard on himself: I can't listen. I forget everything. I'm just a weird kid. 

And sometimes, out of the blue, he tells us everything that dozens of experts and evaluations have danced around and guessed at but never fully landed on:

Mom, I figured it out. There's something stuck in the space between my ears and my brain. There's stuff in there that doesn't belong, and it's keeping the things I hear from getting to my brain and interrupting my thoughts all the time. So you just need to take me to a doctor who can open my head and take that stuff out. And then I'll be fine. 

That was over four months ago. Right around the time a few of those experts admitted that yeah, it's probably time to explore ADHD medication. 

And so we immediately looked for a doctor who could help him with the "stuff" — stuff I always picture as a noisy cloud of static, packed into his head like cotton balls. (And yes, he's had multiple hearing screens — his ears and hearing are just fine.) We'll want another full private evaluation, of course, just to confirm, and we want to take him somewhere really excellent.

We wasted two months naively thinking the first doctor would eventually call us back — Noah's therapist sent him a personal note, after all, imploring him to — and another month sifting through the next round of recommendations in search of someone who 1) was taking new patients, 2) saw kids Noah's age, 3) had a reasonable waitlist, and 4) would actually pick up the phone and talk to us, for God's sake.

(Our pediatrician's top recommendation hasn't even cleared out space in her voice mail since December. And here I thought medicating a kid was supposed to be easy, with Ritalin being sold in vending machines alongside the candy and whatever imaginary designer diagnosis du jour us lazy, irresponsible parents want to blame our kid's behavior on!)

(Oh, I'm sorry. Is my bitterness showing?) 

Our appointment is in April. Two more months of waiting. 

I've probably started 20 versions of this post since Noah told me about the stuff in the space between his ears and brain, since we began to consider medication, and I've deleted them every time, thinking that maybe I should wait until we have the appointment and "know" for sure. Or that maybe I don't really want to talk about it at all, or shouldn't talk about it.

On the one hand, Noah's privacy weighs heavier on my conscience, and my interest in the constant feedback loop of online praise/criticism/but-have-you-tried-THIS has worn thin. On the other hand, not a single week goes by where I don't still receive at least one email from a fellow parent who has followed our special needs journey and is reaching out as they begin their own, or are simply navigating a new zig or zag along the way. And looking back, there are countless successes, ideas and resources we found solely due to you, the Internet, blog writers, blog readers, commenters, emailers and the like. Our lives (Noah's included) are infinitely better thanks to that collective you, and I feel like you guys deserve the occasional update. And it would be massively dishonest for me to pretend that the whole SPD/PDD-NOS/ADHD/IHAVENOIDEA thing wrapped up with a neat little bow at some point. 

It hasn't yet. But I think Noah's finally told us why. 

Comments

Lisa (@BindsTheTuna)

My now-20y son said almost the exact same thing before we put him on ADD meds (he had no hyperactivity component, which made it HARDER for doctors to diagnose him wtf). "There's a buzzing in my head. Sometimes all I can hear is the buzzing."

Concerta finally stopped the buzzing.

Sarah

He's demonstrating more self-awareness in that comment than is possible for many adults I know. I have no magic wand for him or for you, but I will be all Ask-Moxie on you and reiterate that you are the best mama for your child. Your willingness to share is SO helpful to so many. And you are doing so VERY right by that boy will all that you do and say (and sometimes with what you don't do or say or insist upon) -- please don't ever forget that.

D

If it helps, Noah's story helped a lot when I was crashed out on the couch with second-pregnancy nausea and only had energy for your archives. We got her into the diagnosis process because of you. Our lives are better--all of us--because of you.

I really, really hope this next step helps give Noah, and thereby you, some peace.

D

*helped us figure out our daughter needed extra attention. The thing with the words and the coherence is not so much happening today.

Angie

Thank you for this. Solidarity.

Cristin

I always love hearing about Noah, and shudder to think how monumentally I might have failed him had he been my firstborn. So first of all, kudos for always going to bat for him. He is important and NO you are not just 'looking for excuses'
Second, my adorable micro preemie nephew is 10 now, totally adorable, and very high maintenance. Of course I and my sister think he rocks, but teachers? not so much. He has now been diagnosed on the spectrum...but in NJ apparently Asberger's does not mean IEP? Wtf?I keep forgetting to steer my sister over here to read of your journey, thanks for the reminder.

Wendryn

I really hope you find something that works for him. He sounds like an amazing kid, and you are clearly a very good mom.

Wendy

Noah described it well. I have ADHD. It's like driving in a car in heavy rain with the windshield wipers turned off... ritalin changed my life. I know people will judge but just do what feels right. It works differently for different people, definitely deserves a try. Good luck!

Cait

I want to hug you so hard right now, you and Noah and everyone else in your whole family because that is probably the best description of why so many kids with special needs fail, because they can see that other people are different, "better" at things but not why and that is what kills them.

T

Our son (almost 7) has been on ADHD medication for almost a month now. I was extremely hesitant to start it for a number of reasons (I think it's overdiagnosed/we expect too much out of 1st graders in our school system etc etc etc), but he was saying the EXACT things Noah is saying, and it turns out, those are textbook signs. Also, it demonstrates just how bright they are because they can put it into words.

Gina

Great post, Amy! Once again, it sounds as though you're telling my story (but for the paperwork part- we desperately want a 504 plan for Ben but our district is dragging its feet & is reluctant do that for us because- money). I want to print this post out & hand it to my parents, inlaws, teachers & doctors who don't seem to understand any better than I do, or Ben does, why he is the way he is. Mostly all we get is finger pointing & accusations of "bad parent" or "bad kid". It's frustrating for us as parents, I can't even imagine what it must be like for the kids dealing with it, whatever 'it' is. It would be nice if we had better access to help in our nearly decade long quest to find out what's in "that space" & how to deal with it. We've made numerous visits to doctors, therapists, counselors, etc. & none have helped us understand our journey any better. It may sound strange, but it's a bit of a relief to hear that your journey is every bit as challenging as ours. Your updates along Noah's path are a periodic reminder that we're not alone in our quest. This reader in Oklahoma is glad you're on the trip with us.

Katie

For every kid unnecessarily prescribed a drug, I tend to think there are ten more quietly benefiting from it. I am so grateful to live in an era when brain sickness is TREATED just like body sickness is treated. No shame. No blame. Just treat the problem and help kids live their lives. Noah is so lucky to have a mom to help him live the life he wants to live.

Gwen

I took Ritalin for several years as a child. It helped me tune out the buzzing I felt and I was finally able to concentrate in class and felt like I could be smart and successful like my classmates. This was in 3rd grade. It helped me gain the coping mechanisms I needed to tune out the buzzing of my own accord and eventually I didn't need to take the medication any more. I am so thankful to my parents for doing everything they could to help me manage my LD(ADD/Dyslexia)

Keep Noah as involved in the decision to take medication as you feel comfortable with. He will tell you if its working and his opinion and success is the only thing you need to worry about. There are many nay-sayers when it comes to medicating a child. They probably haven't ever worked or lived with a child with a learning disability and most likely don't have an LD themselves. They can't understand and never will.

Keep working! You will make and so will Noah :-)

Jessica V.

I'm so very grateful to you for sharing your and Noah's story with us, and really hope you are able to share his experiences with ADHD and how you and his doctors decide to treat it. I also love his description of what it is like inside his head - sounds so much like my oldest (3rd grade, ADHD dx since 1st grade).

We tried Concerta but stopped because of his weight loss (10 lbs in just a few months). TBH - I think the meds benefited him from a focus standpoint, but his teachers are pretty anti-meds and it has been tough to get a clear sense of what he's really like when medicated in school. While this annoys me to no end, if they are willing to deal with him in his unmedicated state, and he is still able to access his education in spite of his focus issues, then I'm OK staying off the meds for now. We continue to see a therapist who works with him on how to stay focused or regain it when he has lost it, but I worry about next year when school gets exponentially harder (4th grade scares me). Maybe we'll have to try them again at that point - who knows?

Anyway - thanks so much for giving your readers insight into what you are dealing with - we all appreciate it. :-)

Jenny

I see echoes of my sweet nephew Nick in so many of your Noah posts, particularly this one. They even look alike. Nick is now 22, in college, and still benefits from medication. It may not be for everyone, but exploring the options available is the best thing we can do as parents. Thank you for sharing your thoughts with so many.

Janet

You and Noah both sound quite spectacular. Keep on, mama.

Shawne

It's awesome that Noah was able to express to you how it feels inside his head. My 15 yr old (in on the autism spectrum, SPD, ADHD combined inattentive/hyperactive type, dysgraphia, dyscalculia) still can't tell us those things without seriously detailed questioning on our part. You are doing exactly what you need to be doing for him...he's a blessed child. Getting frustratrated and showing some bitterness is to be expected...and it's okay. As for ADHD and medication....we did everything possible to avoid it, we wanted to try all natural remedies first. He was about Noah's age when we finally realized he needed more help than that. We did Concerta for 3-4 years....it worked miracles. The *only* caution I would offer about it is....one of the side effects is suppressed appetite. My guy is a picky eater and a suppressed appetite, well, it kept him very small and was ultimately the reason we took him off it.
Meds or no meds, you're the expert on Noah...and a kickass momma....

m.

We waited 5 months for a full eval. I feel like the intake people should offer some sort of "But what do I do NOW?" counseling when they schedule these things.

I just want to add my thanks -- your sharing about Noah has helped me recognize that sometimes there isn't a tidy, straightforward diagnosis and treatment, and that it's legit to approach from different angles as you try to fit the puzzle together.

Danielle

Congrats to you on listening to your child, your gut, and being flexible enough to try new things for his benefit. For what it's worth you sound like one amazing mama and he sounds like one spectacular little boy.

Stephanie

I hope you can get Noah what he needs soon. You are such a great mom and so good at expressing what's going on. I think it's amazing that Noah is able to tell you now what he's actually experiencing.

I just wanted to say that your words have helped me. We had some concerns with our younger daughter at a year old (regression, no eye contact, no social responsiveness), and you gave me the courage to get started. She snapped out of whatever was going on (a less than ideal daycare situation was to blame, I think), but still, thank you so much.

Shelbey

Let me just add in how great I think you are. My husband just started taking medication for his adhd in the past 2 years, and my heart just breaks when I think of him as a kid in school. Especially because his parents did not treat him like you treat Noah. So I just think you are great, and thanks for updating us.

SarahB

First I want to give Noah a hug and then you. What a bright, wonderful boy puzzling his way through this difference. What a hard thing to do.

And, you, oh, amalah, you. You have helped me through plenty, and I would give you a big hug if I knew you personally.

Patty

Oh, Noah... what a precious boy you have! His description sounds exactly like what I see in my own 7 year old. He is non-verbal, but the feeling of buzzing in the brain seems pretty accurate. We actually TRIED medication, but apparently he metabolizes differently, and didn't do well with either type of ADHD medication. He is currently on a gluten-free diet, which helps, but mostly, it has to be managed behaviorally. I look forward to reading how much you all are able to help Noah!! (((HUGS)))

Jean

He told you why because he is awesome. That right there, his ability to tell you why, shows how amazing he is.

Waiting for appointments kills, waiting to get a diagnosis is mind numbing. But in the end, your love and support will get him through.

I am a PDD-NOS parent and I get it. So no advice/haveyoutriedthis/criticism (who would criticize anyway?), just tons of love and virtual (((HUGS))) coming your way.

Cassie

I highly recommend "Driven to Distraction" and "Delivered from Distraction" by Dr. Hallowell. I read "delivered" and it really changed my thinking on my ADD. He describes what it is like PERFECTLY and has a lot of good strategies for coping. I'm pretty sure both of those books focus on adults with ADD (and Delivered has a section for someone married to someone with ADD). He does have a book on parenting a kid with ADD. I haven't read it, but his other books were outstanding, he is a specialist, and I bet it is, at worst, pretty useful. http://www.amazon.com/Superparenting-ADD-Innovative-Approach-Distracted-ebook/dp/B001NBEWLI/ref=sr_1_11?s=books&ie=UTF8&qid=1392142189&sr=1-11

Cassie

Doesn't look like my link worked. The book I was trying to link to is called Superparenting for ADD: An Innovative Approach to Raising Your Distracted Child

kathy

You and your husband are great parent's. You are doing everything in your power to make life more manageable for your little boy. I too am a parent to a child with special needs, she just turned 16. She does not have ADHD but is mentally ill and her diagnosis is changed literally every time she see's a new therapist, doctor or so called specialist. We waited 2 years to start medications with her, by that point we thought this is our miracle. This medication will make her "normal". It didn't help all that much. Certain behaviors changed but not enough to make her "normal". We are now in year 5. Each day is still a challenge with her. At times it is heartbreakingly sad, others I am so frustrated I want to scream at the injustice of it. Everyone keeps telling us, we're awesome, we care, we are doing the best we can. I know what they are saying is true, but inside I feel like I constantly fail my daughter. My hope for you is that the medication route works exceedingly well with your son. I know that it is hard to take in sometimes but listen to the people who say your doing everything right, even though inside it feels like you have done something wrong. I can't say it gets easier with time, but you learn that "normal" isn't always "normal".

Ali

I have nothing helpful to add...other than I have a toddler son and I hope I am half the mama to him that you are to Noah! He is so lucky to have you...and you to have him!

Lynn

I have no idea what to say, but I desperately want to say SOMETHING, because the idea of a child thinking he is stupid and hurting like that makes my chest ache. But you know what? I really don't have to say anything, because he is lucky and you are his mom, and damn woman. You got this.

KJ

Watch this, it is long, but it is right on the money. http://www.youtube.com/watch?feature=player_embedded&v=SCAGc-rkIfo I was diagnosed with ADHD in college, and I did the med route until I finished grad school. But the therapy I did of developing strategies and an understanding of what tools and habits I need to be productive were very very helpful. Good luck.

Amy M.

Thank you so much for sharing your story. I can't imagine how difficult it is for you and Noah.

I just finished reading "The Reason I Jump" by Naoki Higashida, a 13-year-old autistic boy from Japan. It's awesome!

Good luck with your struggles, and don't forget the blog readers are rooting for you guys!

Abbey

"And here I thought medicating a kid was supposed to be easy, with Ritalin being sold in vending machines alongside the candy and whatever imaginary designer diagnosis du jour us lazy, irresponsible parents want to blame our kid's behavior on!" This is so, so incredibly spot on. I was diagnosed with ADHD among other things when I was 21, and it changed my life. Now my son has been diagnosed, but we've had a hell of a time getting him to a specialist around here. The wait list for his behavioral therapist was six months, and we got lots of judgy comments from family and friends when we even suggested that we were considering medication. We didn't realize how much of a stigma is out there still, and yet how easy everyone thinks it is to put your child on medication, like the teachers are handing it out in class.

Thank you so much for your blog, Amy, I've been reading your posts for years and you've been a huge inspiration to me. I have three kids myself and your posts have really helped me keep my sanity. Best of luck to you guys!

Korrine

For what it is worth- I think it will be really cool for you to be able to tell Noah someday that his story helped so very many people- the two of you helped me to seek out some help for my son when everyone else kept telling me he would grow out of "it". It is really wild to be so thankful for a family I will never even truly meet- so thank you for sharing all of the feelings, the stop/starts, the fears with the great big random world. Thank you Noah and thanks to his super awesome Mom. PS: Waiting for your boys thoughts on the lego movie- and products- we are taking it all on this weekend! :)

karen

Neither of my kids have SPD/ADD/etc. but reading your blog and the AS has pretty much shaped my parenting. Not that I've mimicked it or anything, but your whole approach is refreshing, real, raw. It is so much more than I get from even friends that I see regularly at the park. Thank you!

Me

When I read Noah's description of what he thinks is going on in his head, I immediately felt like I knew exactly what he was saying, since I can really relate. And before I got to your very next paragraph, as I was relating to Noah, I thought, "Wow, that sounds like exactly how I feel! And I feel like I have ADD!" I've felt like I've had ADD for a while. And *then* I read your next paragraph.

Noah, I get it. I understand. When you know that you know what to do but you do other things instead, it can feel maddening. Confusing. Frustrating. My husband just called me not ten minutes ago to apologize for being short with me sometimes because he'd just heard Rush Limbaugh say that the worst part of not being able to hear, the worst part of him being basically deaf, is people being frustrated with him. And he was like, "If I couldn't walk, they wouldn't say, 'Run over here!' I'd be like, 'Dude, I don't have any legs!'" We know we're frustrating. Heck, we aggravate ourselves sometimes! We really do try, though, but sometimes we just don't have any legs.

(I changed my username on here so only you would see that it's me by my email address. xoxo)

Fabs

My daughter is 14 now and has inattentive type ADHD and PDD-NOS. She started on concerta in third grade and it helped tremendously. We had to switch things around in 6th grade because the concerta wasn't working and that was hard. We took her off all medication last summer and decided that it wasn't working in December. Luckily, she was able to go back on the lowest dose of Concerta and that has helped. I really like the Concerta because she doesn't have to have it all the time, she doesn't take it during breaks or on weekends. Unfortunately, she is easily distracted at home is it is extrememly difficult (like with Noah) to get her to focus on homework. We spend three hours a night doing what would take someone else 30 minutes. And I have to sit with her to make sure she is staying on track. Now that she is a teenager I am getting a lot of pushback. I don't know if I can do this for four more years. I wish you luck.

Judi

Wow, your son is amazing. I wish I could understand my own brain with that kind of clarity. The way he thinks is kind of a miracle.

Thank you for sharing his story with us. I don't have children but I experience parents and children of all kinds every day, everywhere (who doesn't?) and stories like yours remind me to pay attention, be more compassionate and not to judge.

Stephanie Sheehan

Noah might not understand how to learn in a school environment, but he definitely can think critically, which is so hopeful. Good luck!

Tracy

Hang in there. You're doing great, and it sounds as if you've got a good idea about the next step. It took us years to get our dd dx with ADHD. By that time, we'd tried all the non-medication stuff, and decided to try Vyvanse. After a few days, our dd came home, and said… it's amazing. I can multi-task! She still had to learn to compensate in many ways (organization, etc.) but it means that something that took hours takes a normal amount of minutes. That lack of focus/noise in the background/whatever… it really hurt her in ways I can't begin to understand.

Cathy

I could have written this post 18 months ago. It was like suddenly there was a new awareness on the part of our son that he did things that other kids didn't do because he was bad/stupid/dumb/weird, etc. Then the begging to stay home from school started- the worst. We found a kind, compassionate doctor who was very conservative in her approach to medication and it has made all of the difference for our son. Just to hear the negative self-talk go away made the whole experience worthwhile.

Tina C.

Good Luck. we're considering ADD over here. Our pediatrician can prescribe it, tho.

Angela

Amy,

I tutor an extremely dyslexic 10 year old boy, and he also has ADHD. He is the most creative, imaginative, incredible child I have ever met. BUT! It can take 10 minutes to get him to focus through a simple math problem. He just HAS to move, and think, and move some more. Unfortunately, the outside-the-box thinking and energy that will REALLY help Noah succeed in the future is not really valued in a school setting. Remember, schools are designed for the convenience of adults, not to suit the needs of children.

Much of the time, I'm more of a confidence booster/praise gusher/motivator than an actual tutor... but it helps my student a lot. Just having an outside adult completely surrounding a child with support and love can help that child see their strengths. Moms and dads HAVE to praise their kids (so a kid thinks) but sometimes coming from an outsider, the "you're amazing! your brain is sooo cool!" is more believable. Even an hour a week with a tutor/coach might be beneficial to Noah, if you have the time. Such a person would probably come to you, too, so you don't have to take extra time driving.

Good luck! I wish you the best.

Angela

Amy,

I tutor an extremely dyslexic 10 year old boy, and he also has ADHD. He is the most creative, imaginative, incredible child I have ever met. BUT! It can take 10 minutes to get him to focus through a simple math problem. He just HAS to move, and think, and move some more. Unfortunately, the outside-the-box thinking and energy that will REALLY help Noah succeed in the future is not really valued in a school setting. Remember, schools are designed for the convenience of adults, not to suit the needs of children.

Much of the time, I'm more of a confidence booster/praise gusher/motivator than an actual tutor... but it helps my student a lot. Just having an outside adult completely surrounding a child with support and love can help that child see their strengths. Moms and dads HAVE to praise their kids (so a kid thinks) but sometimes coming from an outsider, the "you're amazing! your brain is sooo cool!" is more believable. Even an hour a week with a tutor/coach might be beneficial to Noah, if you have the time. Such a person would probably come to you, too, so you don't have to take extra time driving.

Good luck! I wish you the best.

Angela

Amy,

I tutor an extremely dyslexic 10 year old boy, and he also has ADHD. He is the most creative, imaginative, incredible child I have ever met. BUT! It can take 10 minutes to get him to focus through a simple math problem. He just HAS to move, and think, and move some more. Unfortunately, the outside-the-box thinking and energy that will REALLY help Noah succeed in the future is not really valued in a school setting. Remember, schools are designed for the convenience of adults, not to suit the needs of children.

Much of the time, I'm more of a confidence booster/praise gusher/motivator than an actual tutor... but it helps my student a lot. Just having an outside adult completely surrounding a child with support and love can help that child see their strengths. Moms and dads HAVE to praise their kids (so a kid thinks) but sometimes coming from an outsider, the "you're amazing! your brain is sooo cool!" is more believable. Even an hour a week with a tutor/coach might be beneficial to Noah, if you have the time. Such a person would probably come to you, too, so you don't have to take extra time driving.

Good luck! I wish you the best.

Leslie

I was diagnosed with ADD as a 15 year old. I did not have the hyperactivity component, which made things more difficult to diagnose. Taking medication for a few years allowed me to learn the tools to work around the ADD. It is a lifelong issue and will always be a struggle, but at least I know what I need to do to function well. One of the most important things for me was to accept that things are just going to take longer. Whether in school or now as a working professional, it is a reality of my life. I plan for it. The other thing that really helped me was breaking down tasks into basic component parts. Seriously. It can be paralyzing to get a big assignment or long term project. Bite sized tasks allow ADD kids to navigate through assignments that are easy for others. My mom helped me to do this as a kid - I am still eternally grateful to her for her help with it because it was a lifesaver with homework and time management. Once Noah finds the right combo of medication and tools to work with the ADD, he is going to feel so much better and happier. Promise.

Deb Hollister

My son Ryan started taking Ritalin two weeks into second grade. He had had the same teacher for first grade so she knew him well and gently suggested it. I will never forget what he excitedly told us after school the first day he took it: "The answers slowed down in my head so I could reach up and grab the right one." His teacher and I both got teary. That little guy is now 22 and will graduate from university in May. It would never have been possible without medication. Best of luck getting Noah the help he needs. He sounds like an amazing boy.

Sassy Apple

I have random things to say....
1. Mir Kamin, also an AlphaMom blogger, writes a blog,'Woulda Coulda Shoulda." If you ever have the time, go about 4 yrs back in her archives and read about her son, 'Monkey.'
2. I think Noah would enjoy the book, "Joey Pigza Swallowed a Key' by Gantos. Read it first, then maybe read it aloud to Noah as a springboard for discussions.
3. Author Jen Lancaster gave you a huge shout out on the interview she posted on FB today.
4. Thanks for the update on Noah. The 'inter webs' cause you to truly care about people you don't know.

Ms. Blake

Not sure if this will help but it's worth a shot. I recently graduated with a B.S. in Speech & Hearing Sciences and one of my audiology instructors specializes in auditory processing disorder. She had some great methods of helping kids with CAPD/APD/SPD navigate the world. She's based in Vancouver, WA but may be able to recommend someone in your area. Let me know if you want her contact details.

Suzy Q

Hugs. I got nothing else.

Superfantastic

That's exactly what Adderall does for me - gets rid of all of the static and noise. I can function without it, but everything is SO MUCH EASIER when I don't have to compete with the relentless channel surfing that is my brain's default setting. I realize when I don't take it how much time I spend mentally berating myself about not being able to pay attention and get stuff done. I wasn't diagnosed until I was an adult and I can only imagine how much more positive my school experience could have been had I had the help as a kid.

Stephanie T

His ability to articulate in that way to you (basically teaching you about his situation) made me think... what if one day he becomes a teacher of special needs kids? Helping others because he lived it - how cool would that be? You're doing the right thing by listening to him and doing everything in your power to help him. Kudos!

Jill

Thanks for the update:) Best of luck to Noah for his appointment.

Julia

I would give 1 million dollars and a kidney if my husband would try ADHD meds. He is 67 and it's like having a 4 year old ALL THE TIME

amymarie

I've followed your blog since our kids were born. My daughter is so much like Noah; SPD, ADHD, Aspergers. We started her on meds this summer and it's been a life changer. She had the same teachers this year, as last. They continually tell me how well she's doing and how amazing it has been to watch her remarkable improvement in getting her work done. Best of luck to you. We had to try a couple of different meds before we found the right combination, so don't get discouraged if the first medication doesn't work. She's on Intuniv (non stimulant).

Kaycee in Texas

Just for info, as I read the first half of this, I was wondering, "Hmmm, have they ever gotten him on ADHD medication?"

[Qualifications: Almost 30 years as the mother of two (now adult) children with ADHD, one of whom also has Asperger's.]

Melissa

I have had many conversations with my son, who is 13, about why school is so hard for him. I have told him that he has to work twice as hard as his friends and it sucks, but that's his reality. We have also talked about how is a gifted athelete and how other kids have to work hard at things he finds easy. We talk about how his dad is very hands on and can fix anything but can't spell very well and about how I read like crazy but math gives me headaches. Basically everyone has challanges and gifts. My biggest fear is that one day he will give up and quit trying.

Kate

Thank you for writing all that you do...our son has, well we don't know...Stixrud says anxiety with a side of ADHD, school says ASD...so who knows (and I am not sure I care as long as he is happy and learning). He passes as neurotypical, except he is not, maybe in a Big Bang Theory kind of way. But he is smart, funny, sweet, kind, creative and fun. I have read and read through your archives and they have helped more than I can ever say.

Jenn

Amy- I am having such a similar issue with my 10 year old daughter. She has a severe stuttering disorder, to the point of not being able to get out her thoughts and really struggles with communication sometimes. It seems to be a cycle, she has pretty good days/weeks and then crap awful ones. I, like you have endured countless IEP's throughout the last 6 years and she has an awesome speech pathologist as school who she works with. But she has asked in the past "why do I talk the way I do when no one else talks like that." It has brought me to tears many times. No mom wants to see their kid struggle with anything, and when there is nothing you can do at that moment to make it stop, all you can do it hug them tight and tell them that God made them extra special and that their brains are just made different. Not bad, just different than others. I have told her time and time again that there is nothing wrong with her brain, it just works so hard because she is so smart that she has a harder time expressing herself than others. it seems to work for now, and each time we try to deal with it the best we can with the love and hugs only parents can give, and most of all a soft place to land and listen when she is having a bad day and just wants to vent, scream and be upset by the unfairness of it all.

Samantha

Thank you so much for this post. Thank you.

You really sound at peace with your decision, and that is the best indicator that it is the right thing to do for your child. Who is adorable, by the way.

Amy

Noah is a genius. I've been following you for many years, not only because of your great writing but because I have a Noah, and hearing your stories make me feel like we're not alone in this. The are a precious few perfect days, and I do and say the right things and he succeeds in school and he doesn't feel stupid or different. Most days I'm only able to remind myself of the precious few days that work. You really have helped me raise my son. That's so weird to say, since I don't know you. But it's true. Thanks for being at my side, even when you didn't know it.

Tiffany

Oh, sweet, precious Noah. He sounds like an awesome kid; I hope he gets some relief that helps him feel like an awesome kid.

Mary

I have so much I want to say but I know I don't need to. Been right where you are and have followed Noah's story and you have helped me understand and accept so many things about my own boy over the years. Thank you for that. Medication was something we resisted until we couldn't any longer. I will never consider myself an advocate but it has been a miracle for our son there is no denying it. My son always said "what's wrong with my brain?" too. Heartbreaking. He is thriving in 3rd grade and we have finally exhaled. Noah is a awesome kid and this is just one more awesome thing about him. Good luck and thank you!

Lindsey

Oh I wish I had something to say that could help. I hurt for Noah and for you. Sending hugs and good thoughts your way.

Leeann

Amy, I am so glad you continue to update us periodically about Noah. I have grown to love him, from the little guy who said "aball, aball, aballaballaball!" (which I still hear, singsong, in my head!) to the handsome, smart and curious fellow he is today.

My son, who is now 12, was prescribed ADHD medicine midway through third grade after we had wondered for some time. Like you, we had him evaluated privately and thoroughly. He used the medication for the remainder of third grade and all of fourth, with the summer off. After that, we stopped the medication and he has done well. He seemed to pick up learning behaviors, coping strategies etc while he was on it that he was able to "translate" and use once he was off it. Medication was a double edged sword for us- relieved some problems and raised others. Ultimately, *for our family* the side effects weren't worth it. YMMV.

He's now in 6th grade at a small parochial school and he is just shining. He's silly, smart, annoying, an out of the box thinker and creative as hell. The small environment is making a big difference for him and getting older and more mature has helped too.

You're doing all the right things for your kids and you will continue to do so, I have no doubt. You will make the decisions that are right for your family and if you need to make changes down the line, you will. Whatever you do, protect what is quintessentially Noah, whether it fits into the system or not. He is a gift to all of us.

Lots of love.

Natalie

I love your blog. And I love your kiddos. My oldest son is a little bit older than Ike and we started out on our own special needs journey around a year ago. Your openness makes me feel less alone on this road. I hope that Noah gets help clearing that space between his ears & his brain and I am sorry that y'all have to wait until April.

Sue

As a mother of three grown children who are ADHD, two dyslexics, two with oral language disorders (one mild, one severe) I feel I can understand your parenting issues with Noah to some extent. Make sure your SLP covers oral language topics like category, features, and functions of vocabulary words, compare and contrast, multiple word meanings, inferences, idioms, Wh questions, main idea, summaries, etc. thoroughly with Noah. Kids like Noah struggle with reading comprehension as it gets more abstract. "The boy clomped across the floor." Did he have heavy boots or was he mad?
Check out schools for learning issues like Shelton School in Dallas. Hope this helps.

Sue

Also, we use medication for all three of our children. With it they made great grades, without it they made zeros.

autumn

Back in my younger days as a summer camp counselor, we would frequently have kiddos who took ADHD medication tot help them with school during the academic year, but would go off of it during the summer to see if they still "needed it" It was tough as a 19 year old working kids through things and finding they grew enough to not need it the next year, but it was also gratifying for parents to see yes, this is helping my child, let's keep going. Medication isn't forever, it's for right now.

My brother has some wacky sensory issues who probably should have had an Aspergers dx, but he's now married and working full time. He just broke an orthodontic head gear a month for a year ((cha CHING for the orthodontist) with his stim behaviors and then we moved on:)

sarah

Nothing clever to say but lots of good wishes.

Thatonekim

Chiming in to say that we have been there and continue to be there with 2/3'rds of the now 8 yr old triplets. We had a difficult time getting into a specialist and decided to go forward with medication from their pediatrician who is confident in supervising ADHD treatment. It helped that, like Noah, they had piles of test results and opinions from teachers and therapists from early on. Good luck & you are doing a great job.

Lauren

It is so, so, so hard to watch your child struggle and possibly even harder to wait for answers. All you want is to help him, and to make his life easier. You all deserve that, and I hope SOMEONE gets back to you, so it can happen soon, instead of having to wait.

Melanie

I know, I know, there is nothing more annoying than have-you-tried....I'm sorry for this...but I just want to help and these suggestions spring to mind as something I know has helped others in a not-identical-but-similar situation...

have you tried...

- GAPS diet

or

- going gluten free?


I just want to help. I wish you every good, and especially every good for your sweet sweet boy. Thank you for sharing his journey with us.

Hugs
xxx

PattM

My daughter is high functioning autistic and almost 17. Your story with Noah is very similar to what we went through with Emily....we too decided to wait to try meds, we didn't want to be "those" parents and we weren't completely convinced at the time that there was anything wrong with her. Meds helped in quieting some of the "static" she had in her head (I love Noah's description!). It has been continual ongoing process but we are fortunate to have a supportive school district and fantastic teachers. She had the same epiphany that Noah is currently having: why am I different? What is wrong with me? I still am at a loss as to explain to her why....
She is now is participating in a group of kids her age with similar type issues and can see that she isn't the only one and has a peer group that "gets" her. I don't know if there are any type of groups in your area like this for kids as young as Noah. She now has friends (yay!)and is gaining some much needed social skills. I wish Noah and you all the best!

Stacey

Thank you for writing about this. My niece takes something for ADHD and it has really helped her in school. I wish the same for Noah!

Abby

Oh. Oh GOD. I could have written this post myself. We are just now starting to deal with this with my five year old son, although looking back on his earlier years it should have been more apparent to us. The berating himself, sometimes smacking his own head like you would to a tv that was short circuiting, the constant inability to just LISTEN, goddammit. Our first step has been to eliminate all food dyes, and a lengthy discussion with his pediatrician who has a daughter with ADHD. For now we are not medicating, only because schoolwork has not become an issue. Yet. The dye seems to have been a big issue with him...he had whipped cream at a babysitters house ("But it's white!" She said.) The next 24 hours were...not fun. The worst part is that he's painfully aware of being different. He told me that he "just doesn't know about his brain sometimes." And that? Is what hurts my heart.

Heather

Patience is definitely the hardest thing to have. I use to get so mad at myself for yelling or having to walk away to not yell at my son. He is ADHD, I tried so many things before putting him on medication. He said something similar to Noah, he said, "there is just too much going on up here.", pointing at his head. That's when he went on Adderall. 2 Weeks in he came to me and said, "Thank you mom, these help so much with all the stuff." He was 8, I knew then I did the right thing. I hope this appointment will get him something that will help take all the stuff out of his brain that doesn't need to be there.

MamaKaren

I am really impressed with Noah for finding a way to articulate the happenings in his brain. That is such a huge, fantastic skill for him to have.

I have no advice, only empathy. I have been on various medication roller coasters for two of my three kids (Little Joe's issues are more well suited to behavior therapy than chemical) and while I think we are in the right mix now, I know that it's never quite done. Right now both are on Adderall for their ADHD syptoms (Princess has the inattentive without the hyperactivity, Hoss has the whole package), but we've tried others in the past.

Cheryl S.

Hang in there! I know it's difficult and maddening, but you are doing the right thing. I have to tell you I just downloaded Freeing your child from anxiety, which you recommended. The static in my daughter's head is caused by her anxiety. She's 8 and it's now starting to affect her grades, so I'm starting the IEP, 504, journey.

There are days that I want to tell her to just CALM DOWN, but I know she can't. We'll get to the medication question at some point, although we're not there just yet.

Thank you for telling your story and Noah's story. ALthough my daughter has different issues, your posts have helped me immensly.

Joanie

This is the first post that has made me cry. I feel what you feel every day with my daughter. Our 9, almost 10 year-old was diagnosed with ADHD at 5. I had known something was 'off' with her for a while but one night when she was in kindergarten she cried and cried and when I tried to comfort her she just kept saying 'I can't make it stop.' 'It' being her brain. She couldn't stop thinking. All. The. Time. Her. Mind. Raced. This past year it became clear that it wasn't just ADHD, she started pulling out her hair, my baby has trichotillomania. My heart absolutely broke and knew I had failed at the most basic motherly instinct, to realize when something was wrong with our child. I was mad at myself because I couldn't fix this with a kiss and cuddles. It's so good knowing that I am not the only mom who gets mad and frustrated and loses patience when we don't know what else to do. Thank you for this post.

Jen

After struggling with the decision for a very long time I finally got an ADHD diagnosis for my son in 5th grade and put him on concerta. It has made a huge difference in his behavior at school. He is gifted/ADHD which adds its own complications. People can say what they want about how awful it is to medicate but unless they have walked in our shoes then they just can't understand. We spent all of elementary school working with the teachers, the guidance counselors, therapists etc. to try to get his behavior and his outbursts under control and nothing helped. He explained the exact same "static" in his head that you mentioned and if he got upset, angry or frustrated he would go from 0 to 60 in a matter of seconds. I have kept him on the lowest does possible so that it gives him a little extra to stay focused during school but he still remains his outgoing happy self. Actually getting the diagnosis and the medication was a lengthy process for us. There is only one psychiatrist where I live that treats children (younger than teens) and she had almost a year waiting list for new patients. I finally got a referral and was able to go to a university hospital a few hours away that has a child psychiatry department. We had to make numerous visits over the course of a few months to get the diagnosis and to adjust the medicine but it was well worth it. Really the only issue we have had was him losing weight and not wanting to eat. He initially lost 10 lbs but he has gained that back and had leveled off with his weight loss. I also do not give him the medicine on the weekends or school breaks to that he can make up for some of the calories he doesn't get during the week. You know your child best and you have to be the best advocate for them despite what others think. Best of luck to you guys!

Brooke

Amy, you absolutely, positively blow me away. You are such a good mom. The love you have for your children gives me chills. Keep fighting! You're doing everything right!

-Jen

What a special kid. How awesome that you listened to what he was telling you. I'm over here cheering you all on.

Elizabeth

I've been reading you for a couple of years and never posted a comment...

My son is 6 and has the SPD and ADHD without the PPD. It's soooo hard and some days it's all I can do to just keep going with The Everything.

My husband and I think there should be some international symbol or gesture that parents can give each other that communicates, "I'm with you. I get it. Stay strong. You can do it. We have no answers either. We're not judging."

Thanks for sharing. Oh, and insert symbol/gesture here: [ ].

Maggie

I have nothing to add that the comments above haven't covered. But thank you. Thank you for sharing this story.

Kate

FWIW, the ADHD meds have helped us so much. With the noise quieted, my son can focus all his attentions on dealing with his other issues (profound dyslexia, some emotional and anxiety issues related to the constant "feeling stupid" that every blessed test tells us is wrong, but he still struggles to believe because why else would his brain be different and it be so much harder for him to read?). And tha ability to focus his attentions elsewhere has really helped so dramatically.

I'm sure you know this, but figuring out the right ADHD meds can be a torturous process. The first one we tried caused my son, already slender, to drop an alarming amount of weight. The second turned him into a scary violent person as they wore off. The third just flat out didn't work. Now we're on our fourth brand, and it's going well and we're happy and he's able to focus on the things that matter to him - be they in school or home without the interference, and it's made things so much better. Plus, with the meds on board, he's been able to learn to read, and he can read whole novels. Still more slowly than his peers, but his brain can learn new paths through the weird dyslexia neurons that have allowed him to access things everyone else takes for granted. Without the meds, he can't concentrate as hard as he needs to in order to do that. They are truly godsends for us.

christine

Oh, man, I really needed this today -- thank you, Amy. And all the readers sharing stories as well -- thank goodness I've read all this today. Yesterday I spent an hour at my computer, weeping while googling "support groups for mothers in Seattle"... Everything I found was for mothers of newborns, damn it, which royally pissed me off because those months of babyhood were heavenly and easy. Where is the support for parents of preschoolers and kindergarteners with behavioral issues??

My six year old boy has yet-to-be-diagnosed issues that are causing him to an asshole at school. ...Probably a constellation of ADHD, anxiety and aspergers, but nothing obvious enough yet to be labeled and get us on a path for official school support. One of the hardest thing is meeting the eyes of other parents in the class on the playground every morning knowing that my boy has likely been a jerk to their kids. What do I do -- apologize to all of them? It is so, so hard.

Anyhow, it helps to read everyone's stories, to know that I'm not alone.

Hillary

This post and many of the comments are so wonderful. These interwebs can be powerful! Thank you for sharing this journey you're on. You're awesome.

Carrie

Amy - This brought tears to my eyes because we are going through nearly the same thing with my son. He is about the same age as Noah (almost 8) struggles with a severe learning disability and we just got an updated evaluation that has identified ADHD and are scheduling appointments to get medication. My son thinks he is stupid, he hates school and it breaks my heart to see him struggle and work so hard to do what comes easily to others.

I too could list a million ways that I feel I have failed my son, and then on the flip side I will get extraordinarily defensive and list a million ways (and tens of thousands of dollars spent)that I have supported and helped him.

I completely understand how you are feeling right now. Me too. BIG HUGS TO YOU.

Also, I learned something from the neuropscyh who just completed my sons evaluation that made me feel so much better about pursuing medication, so I will pass it along and hope it does the same for you. Our neuropsychologist said that there are studies coming out showing that ADHD medication is actually normalizing kids brains after a certain number of years. i.e. ADHD brain is no longer ADHD. I have not validated this information myself, but the Dr. is highly regarded in his field so I'm trusting that it's true. For whatever reason that information almost makes me feel like I am doing a disservice if I don't try medication. Which then makes me feel ridiculous; if my child had any other condition I would not hesitate to give him medication yet with ADHD I feel he should just use willpower to control the issue. It's crazy.

Thank you for sharing your story. I know it has helped me so much and also made me more comfortable sharing my experience with others. It's incredible how many people I have met who have either helped me or I have ended up helping just because I took a chance and shared our struggles. It can feel so lonely - like no one else understands - like everyone thinks these things are happening because you are (read: I am) a terrible parent. We need to support each other and your story provides support to so many. Thanks Amy.

Molly

Hang in there!

Andrea

Maybe consider NIH... I work there and there are always studies look at kids with ADHD and other similar symptoms. http://clinicaltrials.gov/ct2/show/NCT01721720?term=ADHD+shaw&rank=1

I know the investigator working on the study in the link and the amazing staff that work with him and the kids. They are doing research, bu they are also super knowledgeable, well connected, and very resourceful. Good luck on your journey!

Leigh Ann

Hang in there - cliche response, I know. But it's obvious that you have his very best interests at heart and only want to help HIM, not just help make things easier. My sister has ADD, and her son has ADHD. Knowing it runs in the family has me on the lookout, but I have no idea what I'm looking for at this age (my twins are almost 6).

You're doing an awesome job.

Eiko

My daughter is still an infant, and I don't know what lies ahead for her. But many, many times I've said to myself, in my new mom-flailing moments, "If Amy can do X, then I can sure as hell do Y." I know I don't know you, and I know I'll probably never meet you, but you keep me -- and countless others -- going strong. You are an amazing person.

kris

This stuff you post...it helps people. We are going down what seems like a never ending path with our youngest. One thing gets better and lo and behold something else pops up. Reading Noah's explanation about how he feels just helped me with a conversation with my kiddo. And I want to also thank all the adults who have some of these similar hurdles in life with their explanations of how they feel with ADD and ADHD. It think it's so helpful for those of us trying to help our kids to have a better understanding of what they deal with every day. So, Thank You!

Eva

I have a great friend who is a child psychiatrist in Montgomery County. I don't know how busy she is, but let me know if you want more info.

Andi

FWIW It took us months to get into see a specialist for my daughter's health issues. Once we finally got in we had done enough research on our own that we were able to come up with an awesome plan that worked well for our family. It ended up being great timing. I am hoping that the same is true for you.

Astrid

Thank you for the update. We are one of those just starting on the EI adventure and really appreciate your words of wisdom and experience.

JenVegas

Amy, we love you and Noah no matter what. Just sayin.

saiorse

Amy,

I have followed your blog for several years - led here in search of anyone else with an SPD kid. My oldest is my SPD/ADHD guy - he has 2 little brothers and a baby sis. We have lived through much of the same. I like to say we peeled back the layers of need - and once we dealt with most of the SPD - we realized - holy crap the boy real

Hailey

All I got are hugs. Super big hugs for you both.

Finn's Mom

Go to your pediatrician for the meds. You will know if he is ADHD if the medicine works and he's less distracted or hyper - the opposite of what will happen to someone without ADHD. If he gets more hyper it's not ADHD. You cam also try caffeine. Many adults who are undiagnosed unknowingly self medicate with coffee or soda. The stimulant meds metabolize quickly and will leave his system without long term effects. Life changing for my boy.

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