January 6, 2018

First Things First

Posted in ADHD, Journal, life, Therapy, United States at 12:55 pm by Jenn

The process of doing what’s right for a child shouldn’t be so hard.  When I chose not to medicate my three year old for ADHD never did I realize just how much I would have to fight to defend my decision in a world of providers who call themselves medical professionals.  As a medical professional myself, I get it.  We follow the evidence until the evidence tells us otherwise.  It always takes the insurance companies a long time to catch up.  Too long.  If the insurance company won’t pay medical professionals can’t make money and medical professionals have big houses and fancy cars and a ton of debt from medical school that takes money to pay for.  I get it.  What I don’t get is throwing medication at a three year old child.  Medication that will decrease appetite, impact nutrition and cause a laundry list of side effects that will likely require other medication.  I don’t get starting at A before moving to T and I certainly don’t get why a provider would try to make me as a mother feel guilty for making what I believe is the best decision for my child.

What I do get is that the pharmaceutical industry is controlling the medical field and our society is becoming a bunch of medicated, socially awkward zombies and we are all doomed if we don’t start standing up for ourselves and our kids and taking a more active role in advocating for our health.

When my son was diagnosed with ADHD I was relieved.  Finally, we had an answer to explain these behaviors we had been experiencing.  Since we had a diagnosis that meant that there would be a doctor that we would work with for treatment.  What I didn’t realize is just how broad the diagnosis of ADHD is and that there really isn’t one treatment that works for every individual.  What I have learned is that you will spend a lot of time in what resembles a three ring circus trying to sort this all out and literally waste hundreds of hours spinning wheels and getting no where.

You have doctor’s to manage and you have school to manage and you likely have a job of your own and probably other family members to manage…not to mention finding five minutes to yourself in the day to do anything, including using the bathroom without interruption (will post about that later).

The past two months have been a whirl wind of doctor’s appointments and evaluations.  We’ve had speech therapy, occupational therapy and vision therapy.  Of course we started all of this with the recommendation initially of the Primary Care Provider for us to be seen by the Pediatric Neurodevelopment clinic at Kennedy Krieger.  Kennedy Krieger recommended Behavioral Health (BH) outpatient visits and Occupational Therapy in the school to evaluate my son.  We did the BH visits for a few appointments – they were 1.5 hours from home and I wasn’t seeing any improvement.   The suggestions I was receiving were things I was already doing on my own.  We stopped going.  The school OT “informally” evaluated my son and said their was nothing “concerning” to her in the Pre-K classroom setting.  I continued to go for follow up with the Neurodevelopment clinic.  At the follow up visit I told them about the informal evaluation by OT in the school and “no concern” and they accepted that.  Again, medication was recommended – again I declined.  They recommended a Speech Therapy evaluation.  I got on the waiting list and waited.  We had already had a speech therapy evaluation and our son was receiving services at that time, but they wanted “their” own Speech Therapist to do the evaluation.  I took my son for a three hour appointment after a 4 month wait and heard what we already knew – there is a Speech delay.

During my wait I continued educate myself and tried alternatives to medication.  I made diet changes, I added vitamins.  I changed bedtime, we started swimming lessons.  I joined a support group.  In the support group I started seeing a common theme…  Occupational Therapy (OT) evaluation finding of Primitive Reflex Retention.  100% treatable with OT.  Retention of Primitive Reflexes leads to behaviors which mimic symptoms of ADHD and often to misdiagnosis and mistreatment.  I found an Occupational Therapist who specialized in pediatrics and had my son evaluated.  I was surprised and relieved and angered to find that he still 4 of his primitive reflexes.  These reflexes did not integrate and we the source of many of the problems we are experiencing.

There was also reference in the group to Vision Therapy (VT).  In the OT eval there was mention of ocular motor dysfunction.  I joined another group…found a Vision Therapist and paid for an evaluation.  This evaluation confirmed the finding of the retained reflexes and found that because of this my son was having trouble fixating and tracking which would lead to problems reading and learning if not corrected.

I called the PCP to request referrals for OT and VT, I was told that the doctor would do the OT but they weren’t sure he would do the VT because he “didn’t believe in it”.  My response was as follows, “You tell him that I did what he asked and took my son to Kennedy Krieger.  I followed their recommendation and had and OT eval.  OT noted a problem with Vision so I took him to another professional who recommends VT.  So while he may not believe in VT, I don’t believe in medicating a child for a diagnosis they may not have.”  I faxed the evaluation reports for him to review and later that day I received a call that I could pick up my referrals for OT and VT.

Mom for the win.




Float Spa Take Me Away

Posted in ADHD, Journal, life, Therapy, United States at 11:37 am by Jenn

To say that this year has been challenging would be an understatement.  This year has tested every ounce of patience I have and truly been one of self realization.  With a husband battling PTSD and a child with what we thought at the beginning of the year was ADHD let’s just say there hasn’t been a lot of down time.

Husband is finally getting help and working on himself.  He’s lost weight, has more energy and his attitude has improved to his baseline of grumpy.

Child (4.5 year old boy) is a constant work in progress (as any child is).  We started the year on the ADHD train but we’ve now changed trains and are working with something that I have no idea how to handle – (but I’m learning) – Primitive Reflex Retention, Sensory Processing Disorder and some Ocular Motor Dysfunction.

These diagnoses are a relief and at the same time a huge source of anxiety for me.  I’m relieved because I chose not to medicate my child for ADHD and try to treat him naturally first.  I’m relieved that these diagnoses are 100% treatable and that he actually enjoys the treatment.  I’m anxious because in addition to everything else I have to do in my day I have to figure out how to get him to all this therapy in addition to school and myself to work, make a home cooked meal (shout out to Terra’s Kitchen) and at some point find time to sleep (and for the Bachelor and General Hospital).

The services that he needs aren’t available in the county that we live in so I have to drive about an hour to these appointments and back.  In searching for services I came across something called Float Therapy,  I’m intrigued, not for him, for myself.  These Float Spas offer a sensory deprivation chamber where you float in about 18 inches of water that is saturated with magnesium salts leading your auses yobody to float without any effort.  The chamber is dark and you float in silence for 60 to 90 minutes…your choice.  I can’t wait to try it.  Kind of like a bath of silence.


September 4, 2017

Summer School

Posted in ADHD, Journal tagged at 8:15 pm by Jenn

My son is an only child.  He attends Pre-K and daycare but doesn’t have neighborhood friends to hang out with.  I have friends with kids his age but we don’t get invited to the weekend get togethers or get aways.  It makes me sad for him…and me.  We try so very hard to stick to our routine but sometimes I wonder if I’m making the right decisions for him.  Changes to his routine and schedule make him unbearable and just lead to less invitations down the road.  But people don’t seem to get it, or us and we are finding ourselves being loners.

He and I took a road trip over Spring Break to visit friends who live out-of-town.  We both had a wonderful time.  I kept him on his schedule during that trip as much as possible.  Bed at 8:30, melatonin, fairly decent diet.  We were invited back this summer. Once we were there, I almost immediately started regretting my decision.  Diet was out the window – literally eating a yellow food dye popsicle before I even unpacked the car.   Sleep wasn’t happening – no naps, 10:00pm was early.   By the end of the second day the kids weren’t wanting to play with him.  I had run out of clothes because he wasn’t focusing on using the bathroom and was peeing and pooping in his pants.  He wasn’t listening and I was at my wit’s end.  There was birthday party for a neighbors child, they made slime…which for my guy was a disaster.  I spent an hour cleaning it up off the porch.  The cake – the food dye…let’s just say I fucking hate artificial food dye!

By the end of the party I was in tears.  I was regretting making the trip.  I was tired of washing laundry and finding my kid playing alone.  I was tired of peeling him out of trees and  ending up covered in poop.   I was tired of everyone telling me he was fine, when he wasn’t.  All the progress I had made had been unmade in less than 48 hours and I was a mess.  All I could think about was that I didn’t have the strength and the courage to do all of this again…I felt alone.  I sat on the couch in a room full of people with a mimosa and felt 100% alone.

Someone noticed that I’d been crying and asked if I was ok and I lost it.  I wasn’t ok.  I was sick and tired and I was tired of being tired.  I was tired of people (adults and kids) not getting it…thinking my kid is like other kids and not getting why I watch him the way I do.  I was tired of hearing it’s ok.  Let him have just one, or he’s fine, let him play.

School starts tomorrow and for that I’m thankful.  The past two weeks I’ve tried to get back on schedule with wake up, diet and bedtime.  It has been rough.  Potty training is for the most part back on track.  Pre K 4 is 1/2 days in the afternoon so that means no nap – which is not a good thing.  He really hasn’t napped in 3 weeks so I’m not worried about him falling to sleep at school, I’m worried about him being an asshole. This kid can be a bear when he doesn’t have enough sleep.  I decided to move up bedtime by 30 minutes and spend that time winding down with books.  We’ll see how that goes.

Oh, and we’re back on melatonin until he’s back on track and settled in to this school year.  As for out-of-town trips.  We will continue to visit friends, but we will stay in a rental house or hotel so that we can have more control on food and sleep.  Many lessons learned this summer.

July 30, 2017


Posted in ADHD, Journal at 9:18 pm by Jenn

It was one of those days.  A day where there was too much energy to be gotten out and not enough getting out being done.  No one was listening.  By noon I was tired of repeating myself.  Thankfully, I did get an hour of peace and quiet during nap time.  The afternoon and evening were much the same.  We played in the pool, played in the yard,  played on the scooter, played with the neighbors, etc.

When we got in to bed to read books this evening my son said to me, “Mommy, I will try to listen tomorrow.”  It breaks my heart and makes me happy all at the same time.  I know he hears me…now I just have to figure out how to get him to stop AND listen at the same time.  Until then, tomorrow will just be another today.

July 29, 2017

Alphabet Soup

Posted in ADHD, Journal at 8:41 pm by Jenn

When my son was 18 months old I started getting complaints about his behavior from daycare.  Biting, temper tantrums, not listening, not following instructions, etc.  I wasn’t sure what was going on.  I went to the pediatrician, they told me this was normal.  I talked to friends and family.  Everyone said it was normal. We did end up getting tubes in his ears because of frequent fluid and ear infections and thought maybe some of the not listening and not following instructions was because he simply wasn’t hearing.  Problems persisted at daycare and it just got to be too stressful for me to pick him up everyday and hear about how “bad” my child had been.  I switched daycare.  I went from a large center to a home provider.

After a few months the new provider expressed concerns that something was wrong – speech not on level with other children his age, not able to stay on task, frequent need for redirection….back to the pediatrician. We had an evaluation by our local Infant and Toddler program and they expressed no developmental concerns, all of the pediatrician’s testing came back normal.

Fast forward to age 3 at our well child check.  My son was his displaying his “normal” behavior at the appointment, this time the pediatrician wanted to know more….is this what the daycare provider sees?  Is this typical?  Does it get worse?  Yes, Yes, Yes.  He suggested we return to the local resource but also get on the waiting list to be seen at Kennedy Krieger.   He said, I don’t know that there is a problem, this could be typical tired 3 year old behavior, if you don’t need the appointment then you are fine, but in 6 months when/if this behavior is escalating then you don’t want to have to get on the list then….

4 months later we were being seen at Kennedy Krieger, we answered a LOT of questions, we filled out a LOT of paperwork.  We met with 2 different providers on two different DAY long appointments…the diagnosis, ADHD at age 3 in addition to a Speech and Language delay which was diagnosed on the re-evaluation by the local resources.  What did all this mean?   Preschool at age 3, an IEP, behavioral health visits and a LOT more unanswered questions.

The provider wanted to start my son on medication at the age of 3.  I declined.  My reasoning, his behavior is not out of control.  He is 3, he is growing, he has a speech delay and if the medication is making him feel bad he won’t be able to tell me.  No meds.  What other option do we have.

Being a Dietitian I know the power of a good diet and I know that for many of these kids there is a dietary component.  We don’t eat poorly in our house but I could make some changes for sure.

Today I made the appointment for our annual check up….one year later.  We still aren’t on meds, we have eliminated red, blue and yellow dye.  We use melatonin to help get a good night sleep and we had a successful first year of school with NO COMPLAINTS from the school at all about behavior or lack of attention and the IEP is progressing nicely.

I do feel the behaviors are escalating, but I feel it is just with me.  I get nothing but praise about behavior when he is in public, at other people’s homes, etc.  With me, he is a baby monster.  The tantrums seem constant, the whining is unbearable, the not listening, the hearing “You’re Mean”, I am at my wits end.

I think a lot of this is just simply a kid who has not had to deal with consequences for his actions.  I know it’s not too late to reign him in…I hope it’s not too late.  The doctor told me a year ago, “pick your battles and win what you pick”.  I think I picked the wrong things.   Sometimes I feel like he acts this way because of something I’ve done (or not done), but then I remember that he really can’t help his actions sometimes.  The hard part is telling the difference.


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