Monday, March 17, 2014

ADD - How we came to decide medication was the right choice for our child.

When my eldest son was born he changed my life.  He was a delightful baby.  He would lay on the floor happy as a clam while his father was writing papers for school and give him giggles and smiles whenever he would turn his eyes toward him.  As he grew to be a toddler he just got better.  His head was a mass of golden ringlets.  He was exceptionally loving and obedient.  He would sit for hours looking through books.  He would reach for you with dimpled hands and his laughter was magic.  As he reached school age though we started to notice that things were maybe not as magical as they had once been.  He was exceptionally shy, to the point that it took him weeks to speak in class.  He was withdrawn.  His teacher complained about his lack of muscle strength in his hands and complained that he would do things like drop his pencil on the floor.  When we went to our first parent teacher conference she told us that we should hold him back.  Dr. J and I were shocked.  We knew him to be a bright boy and her complaints about him seemed knit picky.  My mother had been a k-2 grade teacher since I was in kindergarten.  We called her up and talked about it with her.  We spent days looking for and reading through studies about the pros and cons of holding children back.  We took a good hard look at our child and my brother who he most closely resembled in looks and behavior.  The quirks my brother had in kindergarten, he had in fifth grade, he had in high school, he still has today.  Some things people grow out of, but some things are just part of who you are and you just have to learn to work around them.  We realized there was a good chance that is what we were looking at.  When it came time to meet with the principal we were prepared with literature and our decision.  I cried through the whole meeting.  The teacher talked for awhile and then Dr. J said the one word that made the difference, "No!"  Everything changed after that.  Suddenly it became "what can we do to support him in his learning?"  The next year when the kids tested for gifted and he did well enough that they would need to let him go to enrichment if we chose to leave him at that school we felt vindicated in our choice...but even with that school has not been a picnic.

Captain E has always struggled with spelling.  We've tried a multitude of different things to help but it almost seemed random.  Sometimes he'd miss words that I knew he knew how to spell.  He struggles with his handwriting.  He struggles with his writing assignments.  When he is trying to write something that has a time limit his handwriting and spelling get exponentially worse.  He struggles with staying on task, with being organized, and he still struggles socially. He is very quiet and does not interact with the other kids as freely as I'd like.  Even though his grades have continued to stay decent, A's and B's, it just seemed like school was becoming something of a nightmare.  I'd come to class and peers would be trying to talk with him and he'd barely acknowledge they were there.  Homework became a major battle.  As expectations were getting greater the spelling and handwriting thing was really starting to worry me.  Last year his third grade teacher and I got together and then we had a big meeting at school.  They evaluated him, gave him an IEP that gave him time and half on test when he needed it, they put him in a social skills group once a week, and they gave him time with an occupational therapist to work on his handwriting.

While I was happy to have some extra support on the school front at the home front things were getting worse and worse.  Everyday after school homework was a battle.  It would take an hour just to get a pencil, get is sharpened, get the homework out, even get started.  He would yell and scream.  Most days he ended up grounded and homework was taking up all his after school to bedtime time.  Dr. J and I were at our wits end.  We were fairly certain he had ADD but for years had been hesitant about moving toward medication.  Does it seem weird that we feel that way?  I mean my husband is a pediatrician and I studied human biology so we both are fully aware of the amazing things medications can do but we also wanted to wait until we knew it was necessary.  Then one day it happened.  Captain E turned to me and said, "Mom I just can't concentrate the way the other kids can."  It broke my heart.  So I got him hooked up with a local mental health clinic in town.  It took months and at the beginning of the school year he missed a lot of days being hauled up there.  He meet with a counselor, did a bunch of testing, had all his school testing looked over.  Finally after the psychologist and the psychiatrist had had time to confer they gave me a firm diagnosis of ADD.  They suggested medication to accompany organization life skills.  

I had mixed feelings. I'd been so worried about "over medicating" him in the beginning.  I didn't really know what I meant by that necessarily but I was worried about him turning into just some compliant lump on a log kid.  I wanted to have my kid, just one that could move past distractions a little more easily.  I worried about what medication said about me and what it said about him.  I had a worry about the history of medication in my family.  My brother who is most like Captain E had hated medication as a child and had been pretty angry at my mother for forcing him to take it.  I worried about side effects.  I was scared but I was also feeling a little desperate.  He was asking for my help and I knew something had to change.  So Dr. J and I talked about it we agreed to try.  The first medication they gave us was a total dud.  We didn't notice any difference in his behavior although we were never able to get to full strength because it made him so nauseous that he would puke at school if he took it in the morning or he couldn't sleep if he took it at night because he had an upset stomach.  

Next they decided to try Daytrana, something they had originally shied away from since he is super skinny, and two has a tendency to be a little anxious.  Daytrana is basically Ritalin in a patch form.  I put the patch on him in the morning.  He eats breakfast with a normal appetite.  The patch kicks in by the time he gets to school.  He isn't so hungry at lunch time.  He pulls the patch when he gets home from school and then the medication is still in his system long enough for him to get to his homework but should be out by dinner so he has a normal appetite them.  I don't put it on him on the weekends and I don't put plan on putting it on him during the summer.  Sort of an interesting little side note he general eats his packed lunch sometime after dinner when he wants a little after dinner snack.

The results have been amazing but I had to really think about them because it just so easily slipped into the way it was that I almost forgot it used to be different.  We have not had a fight over homework in over a month.  He comes home, sits down at the table, gets to work and is almost always done way before dinner.  The loss of homework fights has gotten rid of probably 95% of our negative interactions.  I'm not going to pretend that we never fight because he's nine years old and sometimes he has a difference of opinion on how his life should go, but the biggest fight in our life almost with the snap of a finger is gone.  His writing responses have gotten much longer.  At the beginning of the year when he'd have a test with a writing section we'd be lucky to get one or two incoherent sentences from him.  Now he can fill out a whole page with a well organized paragraph.  His teacher has noticed a difference in him socially as well.  This last week we meet for his IEP renewal and she said in the last month he's been coming to the front of the classroom to join in with more of the group work, he's been volunteering to answer questions, he's been defending his answers.  On the home front I've noticed him talking about more kids from school.  One of the biggest light bulb moments, my goodness this thing is working, was his sudden interest in reading.  This month he pulled down the first Harry Potter Book, then the second, now he's on the third.  I'd been trying to entice him into them for years and he just was never interested.  I had to fill his shelves with Diary of a Wimpy Kid, Captain Underpants, Graphic Novels, Believe it or Not books and then beg him just to get him to read anything.  Every time he'd picked up the Harry Potter Books before he'd always quite after the first few chapters.  I now realize the poor kid just couldn't get his mind to focus.

So when is medication the answer?  That is such a hard choice because really it is so deeply personal.  Every medication runs the risk of side effects.  There is potential social stigma.  There is the opportunity for medication abuse.  These are things parents have to weigh against possible potential improvements.  I think back to when our Kindergarten teacher asked us to medicate him and wonder, should I have done it then?  But even though our results have been so good I'm still glad we waited a few more years.  I definitely think teacher input is important, but some behaviors may improve over time.  We wanted to wait and see and in doing so we gave his body and mind four more years to grow without having to worry about his growth being stunted.  It was that continued inability for him to harness what multiple intelligence test had told us was there, it was the anger that lack of concentration was leading to, it was the fact that he could now vocalize for us what he did and did not need that lead us to think it was maybe now the time to explore this avenue.  I like now that he was able to be part of the choice with us, that he is old enough to be aware of the fact the there is a difference for him when he is on the medication and that he can see it's value. Medication does still make me a little nervous so I'm glad that we have the opportunity to dose him with just the amount he needs for just the time he needs it.  The thing about ADD is that when you're home playing computer games, are at the pool, or riding bikes with your friends you might not need that extra little help.  

Suggestions from me, just some mom of a kid with add, to someone else who may be a parent trying to decide what to do with a child who appears to have add or adhd. 

There are really two ways to approach this issue, both of which usually end up at the same place because once you start one they will most likely suggest you get the other one started as well.  Ultimate we jumped right in both routes and we ended up with a very well thought out plan of attack.  

If you suspect your child had ADD or ADHD 

1) It is time to buddy up with your pediatrician and your child's teacher.  Depending on how comfortable your pediatrician is with the issue they may be willing to make a formal diagnosis and possibly prescribe medication themselves or they may want to refer you out to a child psychiatrist.  Regardless of which route you end up going they are going to give you questionnaires about your child that you and the teacher will need to fill out so get in contact with that teacher and be on your nicest behavior because you are going to need them a lot.  Be honest with them about your concerns and what avenues you are looking in to.  Tell them you are sending paperwork in and ask them kindly if they will fill it out and return it for you.  Make sure to put it in a big manila envelope or hand deliver it because if your child's backpack is anything like mine just thrown in papers may never find their way to the right hands.  Be aware that physicians are probably going to want to go the medication route (ultimately in our case that was where we wanted to go) but if your physician can direct you toward a mental health clinic like the one we ultimately had Captain E diagnosed at there is a good chance they will have counselors, some of whom can help with things like learning how to get organized.

2) Get in contact with the school.  Public schools are required by law to address learning disabilities.  Depending on how exactly your child is affected the school will either need to write up an IEP or a 504 plan for you child.  Most will even, without much push, provide the testing.  My school was incredibly helpful with this.  All I had to do was talk to Captain E's third grade teacher and she got the ball rolling but if your school is resistant send a letter to the school addressed to the Director of Special Education Services.  If they are exceptionally resistant send it by certified mail.  By law the school must reply to your request within 30 days so that is usually all you have to do to get them to respond.  

3) Know that getting a formal diagnosis is exceptionally important.  Sometimes as parents I think we worry about negatively labeling our children but without that diagnosis neither your school or your physician will have much they can do to help your child.  If your school won't give you access to testing, get it on your own.  Call your insurance company, look in the phone book, look up mental health offices online.  When we originally were looking at this issue I don't know if our pediatrician just wasn't comfortable at the time or I wasn't insistent enough about how severe the problem was but she basically just told me, "Mental health issues are self referred".  She has since gotten a lot more helpful but in those first few months when I had no idea what she was talking about I cold called any office I could find with the word psychiatrist or psychologist.  Many were a total waste of time and I got uncomfortable having to tell my story over and over again but I finally got to the office that ultimately helped lead me to the path we are on today.  Once they'd done all the testing and sent it to our pediatrician she jumped on board with us.  Be more direct than me.  Ask your pediatrician for a referral or your child's school but if they don't give you one get ready to search until you find the right place yourself.  That formal diagnosis is the key to getting your child any help that is available. 

4) Be open and honest with your child about what is going on.  If your child is anything like mine they are probably acutely aware of the fact that they are not the same as everyone else.  Kids with ADD and ADHD are over three times more likely to suffer from depression and anxiety than their peers.  They know they are struggling and may be frustrated as to why they feel they are being left behind.  They may get down on themselves thinking they are stupid or lazy.  How much better is it to tell them the truth than have them thinking those ugly lies about themselves!  We let our son know that his brain works a little different, gets a little more distracted by outside influences.  We told him the medications we were trying were to hopefully help him to be able to tune out the distractions.  We asked him to be really honest with us about how they were working and encouraged him to be reflective and self aware of what was happening inside his own mind and also how he was doing overall.  We asked him to look for things that helped him stay on task and for things that distracted him.  We let him know that this was a special challenge that he had but that we, his teachers, the school, and his doctor were all going to work with him if he would work with us so that he could help unlock his potential.

5) Find either a school thing or an extra curricular that your child really enjoys doing and encourage them to take joy in that thing; making art, playing sports, playing music, scouting, martial arts, weekend camps, debate, drama, photography, learning something new, just something.  All kids need a sphere where they can relax, expel energy, and feel good about themselves.  Our son loves classical music so we've encourage him by getting him into piano lessons.  He also loves camping so we've put him into scouts.  It's nice for him to have a place where he can have achievement without the pressure of grades, test, and time limits.

6) Stay Positive and Realistic.  Easier said then done for me sometimes, but when dealing with your child about school expectations it is important to stay neutral. This diagnosis is not an excuse for your child to just slack off but it does mean your child is working with special circumstances.  Be helpful.  Cheer on the accomplishments.  When disappointments happen, stay neutral.  Help them to make adjustments.  Be clear on expectations, rewards, and punishments, but also keep in mind that children with ADD and ADHD struggle with inconsistency.  Stay buddy/buddy with the teacher so that when you get home a bad test or a bad assignment you can find out if this is something everyone struggled with (this happened recently in my son's class...he came home with a 59% on a math test that it turned out the whole grade had bombed, this was a case of poor test writing and I was sure glad I hadn't yelled at him over it), if there was something particularly to the assignment that made it difficult for you child, or if your child was choosing to maybe not do their best.  Then work from there.  We want to build positive relationships with our children.  We don't just want to give them a free pass but we do want to make sure that we are their best advocate and their best teacher.  I hope if anyone else is reading this and wondering "What the heck am I going to do with this child?" that they can see that there is help available out there for you.  Never in any other time in history have we expected our children to sit for such long amounts of time and learn as much information.  It is a challenge for a lot of kids.  But also never in any other time in history have we had some many different resources and paths available.  In our case we took a school/medicine approach.  Right now we are seeing great results.  Maybe in a different time or a different year we will look at home schooling, or just working with a therapist, but  for now we are happy.  Take hope parents though and explore all your options.  Call for help from those who can give it to you and give your child extra long hugs because they need to know that you are there to fight for them, not with them.


  1. But what about this: and this:

    Just something to wonder about...

    1. Myrna I think that was why I was so hesitant for so many years against this diagnosis because I really do believe that some kids are misdiagnosed and I also think some of the stuff teachers don't like is just normal childhood exuberance but I know captain E was very healthy otherwise and it didn't matter that he had scores well on iq test because his inability to concentrate on simple task kept his work well below mental ability. That's why I think it is a tough balance because I'm certain there is "over-diagnosis" but then because of that I think you get people like us who probably wait a little to long because we go for the "well everyone must be misdiagnosed." What I know for sure is we were having some major struggles in this house that almost immediately disappeared with the intro of medication. I feel fairly certain because of that and the extensive testing we've done with so many different participants that we hit the nail directly on the head.

  2. Hi I miss you and how are you not my facebook friend any more. Please get in touch!

    1. I'm just trying to stay off for lent. Should be back after that :)



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