Tuesday, June 3, 2014

A Princess and A Diagnosis: The Day I Started to Learn about ADHD

I've written this post in my head, at intervals along the way, dozens of times.  Still, I kept putting off actually posting anything about the subject.  I wanted to wait until we had a diagnosis... and yesterday, after months of doctors appointments, we were given one.

Yesterday was one of the few weekdays when Paul didn't have his bar prep class and so I crammed it full of doctors appointments that I needed to get out of the way, but where an extra pair of hands wrangling babies would be incredibly helpful.

Appointment #3 was right after lunch and I'd almost canceled it a half dozen times.  Every time I thought of the appointment the first thought that would come to mind was that I didn't care what the results said, they didn't really matter to me anymore, although once, not all that long ago, I'd cared enough to go through the long slogging referral process and actually set up not one, but three appointments.

I'd actually called and cancelled this particular appointment once, sighting the fact that I had no free mornings until the second week in August.  I was told that the doctor only worked in the mornings, but when I said, "Okay, so can you schedule for the second week in August?" they found a way to squeeze us in.

The appointment was for Sadie.  A long time back, after Mae got her diagnosis, I'd started to worry about her, because many of the questions that they asked me about Mae applied more to her than to her little sister.  She is a flurry of constant movement, her hands flutter constantly, she can hardly contain the energy that radiates from her tiny form every second of the day.

It was her fluttering hands, like a little bird ready to take flight at the dinner table, that finally caused me to call and make an appointment with her pediatrician.  We went in and met with her doctor for about five minutes.  Suddenly the attending doctor and a social worker were in the room, telling me that they wouldn't be surprised if she was on the spectrum and giving me a handful of referrals and people to call in the following weeks.

The first results that came back were the blood test.  She is allergic to wheat, cats, dogs and most pollen and grasses.  Wheat was the only shock.

The next test was with a speech pathologist and with the doctor who tested Mae for both ASD and who tests her for her cognitive progress each year.  The results came back quickly.  They definitely didn't think Sadie was on the spectrum.  Her ADOS test was basically a fantastic fairy tale.  When they dumped the toys out in front of her she picked up a teeny tiny book and proceeded to launch into a ten minute story with dragons and princesses and fantastic adventures.

Next came the testing with a local neuro-psychology clinic.  This one worried me.  I googled them and found that the head doctor had a series of one star ratings and that pretty much every patient who'd taken the time to go online and talk about him blasted his bedside manner as horrible (which I can now say seemed ridiculous because he was great with Sadie and was totally friendly throughout the appointment).  One of Mae's workers told me that they frequently came back with ASD results when everyone else said the kid wasn't on the spectrum.  I took a deep breath and went in for the first appointment.

At the first appointment we were first introduced to an idea that had never occurred to me before.  You see, Sadie didn't talk until she was three.  She still has a slight delay, although it's been steadily improving and the doctors so far have seemed to agree that at this point it's correcting itself and that she doesn't seem to need speech therapy (I've seen a lot of improvement since we do so much poetry in her classes).

This time, however, the counselor tied in her constant ear infections during the first 18 months of her life (I'd say she had about 18) with the fact that she hadn't spoken until much later.  He thought that it was very probable that she hadn't been able to hear well at all during that period of time and that that would explain the delay.  In other words, the infections pretty much ended when she hit 18 months and 18 months later she started talking... which was likely 18 months after she really started hearing.

Enter Mommy guilt.  How could we have missed that?  I was less surprised that her doctor at the time had missed it because we had left his practice for a reason (he missed colic, reflux and gave her adult immunizations... It's not really a shocker...).

A few days later I went in for Mae's OT eval and as I filled out the auditory processing section, checking no to pretty much every question (it's the one area Mae tests as solidly normal in) I realized I could check yes to every single question for her big sister in that one category.  And that's when I started to notice how often sounds hurt her ears (she used to sob in Mass uncontrollably every time everyone clapped, which at our old parish was every single Mass).  She still complained of sounds hurting almost every day, while be simultaneously too loud when she spoke almost all of the time.

She went in for the testing and I found myself annoyed as I found out that there wasn't a sensory section at all (the one test I'd requested was the only one no one ordered apparently).  It was all "math and letters and stories."

I wasn't worried about that.  I do school her everyday.  I know where she is with all of those.

Still I went into the office yesterday and met with the doctor, slightly nervous after reading all those reviews.  Sadie bounced off the walls.  She invited him to her birthday party about ten seconds after meeting him.  She bounded to the window to look out.  She hung over the edge of the couch and colored in a coloring book.

He began to go through a giant packet of papers.  She scored extremely high in some areas.  Her math scores were grade levels above what was expected for her age.  The other scores were solidly in her age range with the exception of reading, which was just slightly below (all things I pretty much knew, although it was kind of neat to hear that I wasn't just being a proud mama about the progress she'd made in math and how well she does in it).  I explained that reading was stressing her out so much last year that we'd actually taken a break for about six months and now were picking it back up with much more success (last night she just started reading every word in her lesson for the day easily).

But he had a diagnosis.  She definitely is not on the spectrum, he explained.  But she does also very definitely have ADHD.  He talked about worries and options.  I explained that at this point I wasn't really too worried.  After we started reading social stories and really buckling down to start first grade most of my worried evaporated.

And we discussed how it is likely that there's a sensory delay, since she doesn't really slow down long enough for her sense to process things, which can result in a sort of neurological immaturity.  And the fluttering is likely simply the burning off of that constant stream of energy coursing through her little body.

Then we talked about school and how it's working out.  When we do school she sits in her seat and focuses really well on her work.  When we don't do school... well those days are pretty chaotic... and that's one of the reason we have launched straight into first grade.  She begs for school.  The structure of having school in the morning seems to calm her for the entire day so that she can play differently in the afternoons after her work is done.

So we have no plans for medication or really anything at this point.  It does make me especially grateful that we're homeschooling because I do think that it would be more of a problem in a classroom setting, whereas one on one works perfectly (I think that will be less and less necessary as her reading picks up more and more since she can sit for hours looking at books as it is).

I'd still love to see sensory tests for her, just to give me ideas where she is (and what activities would help), because it does seem pretty clear that she has Sensory Processing Disorder, especially in auditory processing... but for now that can wait.  The only place that I've found that would test her so far is the university and they don't accept any insurance and the test is pricey.  She's such a combination of seeking and avoiding that it's not nearly as straight forward as it seemed with Mae.

Talking to Mae's OT we do suspect that a lot of the clumsiness we see probably has to do with the auditory processing and early ear infections too.

At the moment though, I feel like we're on the right track and have been for a while.  Equal parts running around outside and structure in our mornings seem to be the perfect fit at the moment... and if anything I can always add more running around outside to the mix.

Although now my curiosity about ADHD is piqued and I imagine that ADHD, along with autism, SPD and allergies will become my new favorite subject to read up on.  What a learning year this has been!

In a way it's funny... because as with autism and Mae, as I watched Sadie following the appointment, I found myself more and more amazed with the person that she's growing into and the self control that she has developed and frustrations she's overcome these last few months on her own.

And that is exactly why I am grateful that I went to that appointment.  This diagnosis really doesn't change anything.  But I've found that knowing that there is an actual challenge there that she's struggling with has helped my imperfect patience stretch further and further.  It isn't an excuse for behavior that's any different from what has already been expected, but it does make it easier for me to take a deep breath and not grow frustrated when those moments arrive and expectations have to be explained an extra half dozen times before they start to sink in!


  1. This comment has been removed by a blog administrator.

  2. Thanks for your opinion anonymous. You're entitled to it. The thing is you don't actually know my family. IF you did, you'd know she's not weird. She's the kid that goes over and makes friends with everyone. She's the on getting the new kid in ballet (yes, she's in ballet and has friends in ballet) to come over and play with everyone else.

    Amazingly, you don't need friends exactly the same age as you to "model age appropriate interactions".

    Our interactions aren't limited. She's around people all the time. And the fact that she isn't in a classroom with 30 kids her age and a teacher she's driving crazy with her energy isn't necessary, or even healthier than what she has right now.

    You're entitled to your opinion. It just happens to be wrong about OUR family, probably because you don't know us! Thanks for taking the time to tell me that you think I'm wrong though. I imagine your one of those people who's done it before and as before, I'll continue to disregard your advice since it's not the best choice for us!

  3. Keep on homeschooling her- you're doing the right thing. People are clueless and ignorant- case in point, right there.

  4. And just for reference... for YOUR education... since this is obviously a subject you don't have a ton of current information on: http://www.washingtontimes.com/news/2009/dec/13/home-schooling-socialization-not-problem/

    Studies have shown that homeschooled kids don't usually have a problem with socialization. Just before you go around sharing misinformation.

  5. Thanks Meghan! I keep thinking that maybe the many studies showing how homeschooled children perform will at least reduce the bias... but change comes slowly for some. Even when the child is clearly thriving and happy.

  6. Hi Everybody,

    I decided that I'm going to crack down on comment moderation for a while. If you insult my daughter in a post (like by calling her "weird") you won't get published. In fact, I probably won't even read your comment once I realize that you're being a jerk in the first line or two.

    This post isn't about slamming our educational choices. It's an update on what's going on. I'm done debating our choices with people who are ignorant of anything other than a few hundred words that I publish each day... so if you're going to be kind, post away. If you're not, than maybe follow the rule "if you don't have something nice to say, don't say anything at all..."

  7. You have been busy! My youngest is finally getting an appointment for evaluation later this month (after almost a year). Hopefully, I can be calm like you, I am a nervous wreck just thinking about it!

  8. When we had our son diagnosed with ADHD the doctor and our ped. Told us we need to homeschool him. He could never handle the classroom and would just get lost in the system. We were commended for our choice. Keep up the good work momma.

  9. Prayers RJ! The waiting can definitely be the hardest part. And receiving the actual diagnosis. Sadie's didn't really affect me at all (and it was so unexpected) but Mae's really hit me and took time to process (even though I knew what it was going to be before they said it). It's such a process! Prayers for you going into this appointment! Hopefully you'll get answers that will help you help your youngest moving forward!

  10. It's definitely a good thing you're homeschooling, or you'd have to be dealing with a teacher demanding you medicate your kid! Glad you got a diagnosis, sometimes that is the best relief; just to know.

  11. Hi Kelli! Like you I've found that 100% of our doctors are super supportive about homeschooling too. If we weren't I know they would be pushing totally medicating her so that she could sit in a classroom all day every day... and with this she's sitting here next to me working on copy work, totally focused. I think the small ratio is so beneficial for her since I can help reinforce her focus! Thank you!

  12. Cam:

    I speak from a little experience here... I was never diagnosed, but anyone that ever met me, whether when I was young or now, knows that my attention span is minute. Had ADHD been a more prevalent diagnosis when I was younger, I probably would have been given that diagnosis. That being said, because I wasn't in TRADITIONAL schooling, where there were a ton of kids my age, all being shoved through the same schooling in the same way, saved me and helped formed me. As you know, school-wise, I ended up doing just fine.

    The best things I have learned from my childhood, and now as a parent, in MANY different locations, settings, and set-ups is: DO WHAT'S BEST FOR YOUR FAMILY. From your blog, our IRL interactions, and just your faith I think you know that - but hopefully it is helpful to hear it.

    I am glad you know that the socialization argument is the most naive one that can be made about most homeschooling situations. In fact, as you probably know, homeschooling is one of the best ways to help kids with any sort of attention trait to focus on school and learn to focus. The teacher:student ration is right where you want it to be :)

    You keep doing you, and heed the words of the Pope. The devil wants to destroy the family, he wants in by any means necessary. That means if you have strong families, homeschooling families, homesteading families, etc... he will find ways to come in and break that up, if we aren't careful. And how does he do it? With lies, with doubts, with worries. Remain steadfast.

    St. Michael - Defend us in battle...

  13. I think you should do what is right for you at this time.

    Having said that, as a teacher (teaching 3rd or 2nd grade in Catholic school for 19 years and public school for 3 years), I really resent the "the teacher would push you to medicate" stereotype. Some kids do phenomenally better on meds. They have normal focus, they improve their grades, their self-esteem soars (poor self-esteem and frustration is common with kids who have ADD and ADHD), and social interactions become healthy. Some kids do really well just with therapy! Some kids have milder cases, and we just work closely with the parents to implement classroom strategies to maximize the child's potential. I have NEVER, EVER "pushed" a parent to give their child medicine. That is totally inappropriate and outside the scope of my practice as a teacher. The only thing I and my coworkers do is gently bring up the idea to parents that their child might need an evaluation - but we NEVER suggest a specific treatment. We work WITH families so that their child gets the most out of school.

    I will tell you, the worst thing that teachers encounter with ADD/ADHD is not the kids. It's parents who a) refuse to get an evaluation because "they don't want the doctor to suggest medication" or b) Parents who know their kids have issues but won't work with us on implementing a plan for the child. They just drop their kid off and expect us to handle it. We LOVE when families are invested in their child's educational experience. We jump for joy when moms and dads want to work closely with us to really get the most out of school for their kids. Over the years, I have had some families that wanted to meet privately twice a week to discuss their child, and I (and my colleagues) are happy to do so.

    Medication is not always inappropriate. Sometimes it improves life for the child, and the child's family. Sometimes things can be worked out with minimal or no use of meds. I hate when I hear "teachers just want to sedate kids so that they shut up during class and the teacher can put on Finding Nemo and kick back with a Diet Coke." That is SO far from the truth from my experience. If a teacher ever showed her support of TRYING medication for a specific child, I dare say it is so that that CHILD can have the best chance of success - not just to render the child silent. I stay up late working on alternative curricula for my IEP and 504 plan students. I want to reach each child, and help them succeed. I think most teachers are this way. Why else would we do the job for the pay we get and amount of insults heaved at us from most Americans?

    I wish you the very best in finding the most suitable way to handle this!


    1. It's actually against the law for teachers to suggest medication. So if one does, a parent should report it.

  14. Hi June,

    Hopefully you didn't take my post or comment as an insult to teachers. My mom was a preschool teacher and my dad went from bus driver through teaching to become an administrator... and honestly the vast majority of my teachers in school were awesome. Teachers are definitely not the reason at all that I considered homeschooling. I have so much respect for you guys!

    The part where I mentioned that she'd likely be medicated if she did go to school was actually from my discussion with the doctor about our options. It seemed like a strong possibility if she was in school, whereas I think the one on one ratio at home is huge in avoiding that.

    I tend to be not-so-fond of medication, mainly because I've seen older kids who were medicated since they were little who did have major side effects as a result. And also because I've seen how she does without it, with guidance (but again, in her case I think the ratio of 1 on 1 or 1 with 3 is really big!).

    God Bless you for the work you do! I know it's hard and often under appreciated!

  15. Thank you for your kinds words Joe! And it does mean a lot coming from someone we know!

    And now that Paul is out of school maybe one of these days we can all have a barbeque together! He's still crazy busy studying... but sometimes I can convince him to take a break for dinner!

  16. Cammie...I cab slightly identify with my similar situation. My 10 yr. old daughter has mild sensory processing disorder being mostly auditory and food aversions. She has outgrown some of the other smaller issues. We had wonderful OT who helped and did so much at home with her.

    Homeschooling was the optimal atmosphere for her. I know my daughter and I know she would not thrive in a schoolroom setting. My other three (they are all adults now) went through school and did fine but this is not the case with my daughter. I know she would be *labeled*...even though she is working grade levels above children her age. She is social, fun, extremely curious and bright...I could go on and on.

    We still have some anxiety situations to work out...all in God's time...it's not easy somedays but God is teaching us patience.

    YOU know your children and what is the best situation for them to thrive. These children blossom when they can learn according to their needs and not the *standard* that is set in a classroom of 30 students.

    Many blessings~

  17. I'm sorry for people being so mean. Always sending you hugs and love!

  18. From everything I have read, I can tell that you definitely have your children's best interest in mind when you make your decisions. :)

  19. It seems wonderful to me that these days doctors can identify the unique ways a particular kid is growing and suggest ways to mitigate any challenges they are facing. Kind of like finding out a child needs glasses, only now analyzing how their brains are or are not processing information, and doing something about it when they are young.
    There's this illusion of the "normal" child all of us have, but I doubt there is an ideal child out there where all body and mental functions are working together at optimal levels. There is no perfect specimen (well, maybe there is, but I don't know any.)
    So I think its great that these days doctors can figure out if a kid is struggling with something, and suggest things that might mitigate it. Now, that is wonderful.
    In my own case, it wasn't until I was an adult that I realized I can't listen and write down information at the same time. I don't know what in my brain prevents this. I don't even know if most people have this, or if it is something normal. All I know is that in school, especially in higher education (college level), it became very difficult for me to get all the information that was being taught because it was said just once, and if I was writing something that had just been said, I didn't even hear the new information. In my day no one was allowed to record a lecture, (I think it's still that way in law school and graduate studies) and besides, I didn't even know I had the problem until I started to fail tests. Other students were very reluctant to share class notes (very competitive college) and so, I just didn't do very well. Imagine my sense of failure and confusion about my abilities. It was very upsetting, not only to me, but to my parents, who thought the world of me. But once I went into the work force, I came to know that I can understand a lot of complex things and am apparently very competent, but I realized if I am not listening very carefully when someone is giving instruction, I will look like a total incompetent dummy later.
    It took me years to realize this about myself. When I mention it to others (in my family) they look at me puzzled, as if they don't have that problem. Wouldn't it have been wonderful if someone had been able to tell my parents I had this when I was young, so I could have found ways to mitigate the bad affects of it? Maybe, if I had a diagnosis, college professors would have allowed me to record lectures. I must tell you, the shame of failure in my college days was much worse than any acknowledgement of this impediment would have been.
    If you know Mae has autism, or Sadie has ADHD, isn't it better to know it now, and learn about these things and what you can do to help your child, and that "normal" teaching and learning techniques in a classroom setting might actually work against them? I think so.
    The problem comes when people take the diagnosis and make it a flaw; and in their own minds impose a kind of "I'm better than you" hierarchy on the child or even worse, suggest the parents' are to blame because of how they are raising the child.
    Dr. Phil (!) calls such behavior "leveling." It's a person pulling someone else down so they can feel better or superior.
    So, for all the commenters here who want to throw rocks and mud at Cammie and her family when she shares her personal stories of motherhood and raising kids (which I think is incredibly generous and informative)- ahhh, you're just "leveling" and can be ignored. :-)
    God bless. ~ Bonnie

  20. Cam, your daughters are so blessed to have you!!

  21. My 11 year old dd (also adopted) has ADD. (not hyper). She also has pretty bad dyslexia and other LD. She started on meds at age 7 and it was a great fit for her. (the meds also seemed to normalize her sleep so she stopped wetting the bed) BUT: I'm not pushing meds here. And meds are not usually the only thing one needs to do with ADD or ADHD. My dd has had tons of tutoring and we're currently homeschooling with intensive remedial which has gone great! Next year; we hand picked a school. A public school with a focus on singing. Like Sadie; she does a lot better with structure and this school concentrates the curriculum to make room for the choir practice and music instruction. So no waiting around or loose day. I think it's great that Sadie likes learning so much. I love hearing about her vocation talks. Some times you just know where you want to be in life. I'm sure she's gifted as well. So don't let anyone's snide comments get your down; you're doing a great job with all your kids!

  22. I have ADD (I call it squirel! disorder), and 3 Dis disorder (Dislexia, disgraphia, discalcula) and apparently I'm a little brain damaged (minial cerebial disfuction). I swear I was the kid who could look out of the window for 10 min of the 20 min test I needed 30 min to complete. But I think I turned out just fine. I have that master's and I have an ok part time job which I enjoy and use my strengths for. :) Sadie is fine as you well know. Don't sweat the small stuff.

  23. My little brother had a lot of ear infections as a kid, and we didn't realize it was affecting his hearing until when he finally started talking around three he would only use the accented syllable of a word, because that is all he could hear. He ended up needing ear tubes and allergy shots, because the infections just wouldn't let up, and causht up quickly on talking once he could hear!

  24. You are right that the decision to homeschool or not needs to be based on knowledge of your own family. My first cousin was diagnosed with ADHD in second grade. Her mom pulled her out of private school and homeschooled her and her younger brother through high school. She did wonderful in the one on one environment, was never medicated, and as an adult knows how to manage her ADHD to the point it doesn't stop her from anything (she manages a group of government computer programers in a high pressure environment). My own family was less of a success story. My little brotherstarted showing signs of learning disabilities in kindergarten. My mom was opposed to the idea of therapy or special ed teachers, so pulled us both out of school (I was in second grade). She felt his problems were from "too much pressure", so took an unschooling approach. I loved learning, so was able to convince her to buy me textbooks and answer keys, and taught myself through high school (calculus is kind of tricky to learn on your own!). Ended up getting my PhD in physical chemistry. My brother sort of leaned to read in 11th grade, but never learned to spell, ans at thirty is functionally illiterate and lives with my mom - has never had a checkbook, etc. And he is not a dumb kid - he just can't learn when the only option is to do it yourself from a pile of books (that you can't read yet). We also had the extreme in terms of socialization - my mom felt that no other kids were holy enough, so from 2nd grade until college the only kid I ever saw was my brother. I did start making friends in college, and met and married my husband in grad school (which got me exiled from communication with my mom since she only believed in arranged marriage - has never seen ky four kids since she thinks they are heathens). So long story I am very supportive of homeschooling, but regognize that even a good thing can be done wrong. And I dont homeschool, since I am afraid of repeating the destructive patterns I was raised with.

  25. Hi!
    Regular lurker here, but I am commenting today just to say I am very impressed by how you raise your family! My family is very different from your family (working full time, child care, not regular church goers, liberals....), but I do not think our way of living is the only "right" way to raise a family, like you never say people choosing public school, working etc are doing anything wrong - you simply tell us about your life and what works for you. I have been following your blog for a few years and I am inspired by how you choose to live in a way that meets your family's needs and values. I have never doubted your ability to meet your lovely children's various needs. How commenters find it acceptable to post negative comments about children, or to assume they know better than you what works best for the children and your family as a unit, is beyond me.


I love comments and I read every single comment that comes in (and I try to respond when the little ones aren't distracting me to the point that it's impossible!). Please show kindness to each other and our family in the comment box. After all, we're all real people on the other side of the screen!