I NEED YOU TO STOP BELIEVING WHAT SOMEONE ELSE HAS TOLD YOU ABOUT THE LIMITS OF YOUR CHILD.

I’m NOT JUST  here to tell you it’s ‘going to be okay’.  Sure, we all like to be encouraged, it makes us feel good. But encouragement doesn’t stick when your child’s next behavior rears its ugly head.  You need something stronger so that when you see a setback, you reframe it as a SET-UP.  I’m not here to just Encourage. I’m here to provide Evidence.

Evidence that healing is ongoing.  Evidence that healing is limitless.  Evidence that your child CAN get better.

Because Encouragement is nice.  But Encouragement PLUS Evidence Is HOPE.

Please honor me with your time and step back with me to see Charlie at age 5. Because when you see from where he’s come– you are reminded of something you’ve allowed yourself to forget.  Your child is capable of far more than what you see today.

Sitting in yet another doctor’s office I looked over at Charlie.  At age 5, he still wasn’t interested in imaginative play so the figurines were not holding his attention.  The plastic telephone, however, was just perfect.  In the likeness of a smiling face, that phone was plucked from its shelf immediately.  Charlie picked up the blue receiver and over (and over) slammed it down onto the white plastic base to hang it up.  Each time it was slammed, the smiling eyes blinked.

We’d waited 3 months for this appointment with the head neurologist of a well-respected Pediatric Neurology group.  Numerous Parent/Teacher Assessments had been completed and Charlie had been observed and evaluated.   This process wasn’t new to us.  We just hoped someone could shed some light on the many concerning behaviors and utter lack of awareness with which Charlie increasingly presented.

 The neurologist finally entered and wasted no time with his diagnosis.  “Your son is Not autistic.  However, as you can see by the way he communicates that he isn’t capable of original thought.  I see Pervasive Developmental Disorder, PDD-NOS.  He’s too relatable to be diagnosed with autism.”  At this point Charlie ceased playing with the phone and was now pulling on the doctor’s lab coat to get his attention.

 “Do you have a dog?!” Charlie asked excitedly.   (If he asked this question once of strangers, he’d asked it a million times.)

 The doctor ignored Charlie’s question and went on to explain that Charlie uses scripts to speak to others.  He also said that the reason Charlie makes so many animal sounds and other noises isn’t due to Tourette’s Syndrome.  He explained that it is a phenomenon which in layman terms they call ‘sound boarding’. He told me it wasn’t a big deal, it’s just like when young boys are playing video games and make audible sound effects.  Charlie continued to ask the man if he ‘had a dog’.  It was annoying how the doctor kept ignoring Charlie’s inquiry.

Trying to process what I’d just been told, I moved quickly to Next Steps.

I explained that I’d recently seen a holistic medical practitioner and wanted the neurologist’s feedback on her proposed treatment. I had a list of supplements she’d recommended along with Charlie’s bloodwork, urine and stool analysis.  He listened at first but then waved a hand at me when I started bringing up non-typical treatments like diet changes, yeast eradication, and supplement usage.

“I don’t deal with that. That’s alternative medicine.  Just keep him in a small classroom with his continued speech, occupational and developmental therapies. He has trouble focusing but that’s how his brain is wired.” The doctor wasn’t trying to be unkind.

“Do you have suggestions about how I handle his constant chewing on his shirt sleeves and his relentless temper tantrums?  And he also cries when I take him to large open areas like grocery stores, church or playgrounds.  Is this something he’ll grow out of?”  The doctor didn’t seem to understand how desperate I was.  “He also can’t sit in his seat during circle time without one of his teachers providing firm support on his shoulders. He just wants to get up and run around.”

“You just need to be very patient with him,” the doctor instructed. “Speak very slowly and deliberately. If you get too excited and angry then you’ll only make things worse. You need to be very calm with him If you want him to be calm. And you need firm rules and consistent discipline because otherwise he’ll continue to do whatever he wants.  You should take him outdoors in small increments then work your way up until he can handle the stimuli.”

Charlie asked him again if he had a dog. The neurologist now picked up a photo from his desk and sat and showed Charlie. He showed him the dog and told him the animal’s name. Charlie asked if it was a boy dog or a girl dog to which the doctor replied it was a boy. Charlie was so happy to talk about the doctor’s dog. He now asked if he could ‘see and play’ with the doctor’s dog to which the doctor responded by simply putting the photo down and turning away. The  doctor now directed the rest of the conversation to me and my husband.

“There are a lot of children wired like your son. You just need to be patient with him and always let him know the plan for your day as these children have difficulty coping with change.”

The doctor continued.

“It sounds like you have him in a great school so just follow the guidelines set forth in the IEP.  Make sure he is always in a very small ratio of teacher to student so they can redirect him as often as needed.” He placed a comforting hand on my shoulder as we walked out, and he shook my husband’s hand goodbye.

And there it was. Another doctor’s visit, another dose of hopelessness.

My husband had to get back to work so I drove home alone with Charlie. He fussed and kicked his feet incessantly against my driver’s seat until I gave in and handed him a snack bag filled with gluten free pretzels. Food always quieted him down and I needed quiet. I drove home left to my thoughts vacillating between relief and despair.  Relief that my son wasn’t deemed ‘fully’ autistic, nor did he have Tourette’s, yet sweeping hopelessness of not knowing where to turn next.

At this point in time, these were Charlie’s diagnoses/behaviors/symptoms:

• Diagnosed with Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS)
• “Not capable of original thought,”  as told by Pediatric Neurologist at age 4 yrs, 11 mo
• No motor planning skills
• Qualified for Early Intervention Preschool program with 1:3 teacher student ratio.
• IQ was in range of 80. Evaluation results put him in <2% of peers for both receptive and expressive communication.
• In Kindergarten, qualified for 1:1 aide in the SLD (Severe Learning Disabled) Classroom (at my request, repeated full year of kindergarten in same classroom)
• Extreme issues with depth perception
• Extreme swings of anxiety and emotion
• Inappropriate (maniacal like) laughing
• Endless temper tantrums
• Scripted conversations (“Do you have a dog?”…)
• Extreme strabismus of both eyes (surgically corrected at age 2 1/2, but left eye still out and upward)
• Potty trained not until age 4
• Speech extremely slurred, garbled and quick (only began speaking around age 3.5)
• Echolalia (He’d repeat last lines of what I’d read aloud to him.)
• Constant chewing on his shirtsleeves (Teachers requested I put him in short sleeve shirts.)
• Insatiable need to push his chin into his hand
• Inappropriate sounds including barking and other animal sounds
• Inability to look in one’s eyes when speaking
• No imaginative play with siblings nor toys
• Constant hunger
• Unable to balance on scooter or bike of any kind
• Constant stomach aches, vacillating diarrhea or constipation
• Relentless yeast infections until out of diapers at age 4
• No interest in toys or friends, only videos
• Inability to sit calmly
• Constantly stand in front of TV and replay opening song of favorite show. Would not watch a full length show or movie.
• Need to knock down toys/blocks/Legos his brothers had worked on.
• Need to get ‘a rise’ out of his brothers
• Heavily congested, constant respiratory infections, endless rounds of antibiotics, eyes and nose always wet and runny
• Cheeks always flushed, ears often red, grey circles under eyes
• Need to jump, or spin in circles
• Would sometimes say a string of curse words really fast and with great emotion (adding to my thought he had Tourette’s)
• Impossible to put to bed at night
• Wakeful in middle of night
• Extreme early riser
• Difficult to calm for nap- always fell asleep as if passing out from exhaustion
• Inability to be in wide open spaces i.e., beach, grocery store, church, playground, library
• No interest in outdoor play/playgrounds/amusement or water parks
• Inability to snuggle calmly
• Didn’t seem to know or care about his birthday or holidays
• Hated to touch the grass
• Couldn’t toss a ball on target, couldn’t catch
• Hated to wear outerwear such as hats, sunglasses, mittens/gloves, boots
• Need for weighted vest
• Acted “spacey/out there”
• Zero impulse control
• Severe difficulty with hand writing requiring use of speech to text options at school.
• Always extremely compassionate but was not one to connect strongly with particular friends/not invited for play dates.

NOW, Charlie today:

• Joyful, vibrant, extremely ‘aware’ 10 yr old boy with diagnosis of mild ADHD.
• Clear-headed both figuratively and literally. No more constant congestion, no need for antibiotics. If congested, it always aligns with ‘wrong’ eating. He gets better through a simple diet of fruit and GF millet toast while he detoxes whatever causative foods he’d consumed in previous days. No antibiotics since age 5 when his diet was cleaned with a yeast eradication protocol.
• No stomach ailments or discomfort.
• Above average scores for reading and comprehension, average scores for math.
• IQ in normal range with peers.
• Thoughtful, deep thinker and expressive verbal communicator.
• Zero curse words or repetitive mouth noises or animal sounds.
• Hungry at normal level. Knows what snacks and foods are okay to eat and understands uncomfortable physical and emotional consequences if he eats wrong foods.
• Despite no response to eye patching for years, both eyes straight after a couple months on yeast eradication diet. (What?!)
• By second half of 1^st grade, tested OUT of his IEP; Fully mainstreamed in classroom at end of 1^st Grade
• Currently supported by a 504 Plan; teachers will assist in the main classroom with re-direction, prime seating and assisted test taking when required. Charlie struggles with focus in the classroom although teachers are quick to say that although he may appear to not always be listening, he’s catching every word. He struggles with handwriting and composing his thoughts in sentence form. (He finds the process of writing USELESS he says. Ha!)
• Charlie can still perseverate on a topic if he’s unsure of outcome– but he knows to talk this through. If he does this at school I told his teacher she can put a post it on his desk which confirms what he’d like to be sure of. (i.e. perhaps there’s a fun assembly that day or he has to leave for a dentist appt.; he wants to be sure it’s not missed or overlooked. At home, he would remind me several times at bedtime to wake him on time so he could ride the bus with his friends. I handled this by sitting with him and together we set my phone alarm and he knows this will go off every weekday.)
• Enjoys playgrounds, and has no problem at large outdoor events. Enjoys amusement parks but gravitates to water play and simple rides which are not noisy and not jolting.  (Then again, he could LIVE on Tilt A Whirl. Oh to be young!)
• Takes his own shower or bath and gets ready by himself.
• Has no sensory issues with clothing or outerwear.
• Easily wakes for school each day and sleeps in until 7:30am on weekends.
• Fully does his own morning routine to get ready for school with minimal complaint.
• If feeling emotional he comes to me and says “I don’t know why I feel so (sad, mad, stressed)” fill in the blank. We talk it through and many times he will actually say “Darn I shouldn’t have had that ice cream/pizza etc. yesterday.” (Yes- he knows what it feels like when he’s detoxing wrong foods.)
• No temper tantrums. (Yea baby- read that one again!)
• Appropriate laughter, no maniacal eyes or tone
• Acts clear and present
• Comes in from school each day and does his homework before even requesting a snack because he ‘likes to save his snack for afterward.’ (Talk about impulse control.)
• Finishes all ‘chores’ as soon as asked (because he knows he will not earn screens or friends if his To Do list isn’t finished.)
• Enjoys playing with others and has 2 best friends who consistently ask for playdates. Feedback from friends’ moms is that Charlie is a joy to have in their homes.
• Happily snuggles in with siblings or mom/dad to watch a movie or hang out.
• Has no problem on grass without shoes or being on the beach. Can sit at great length and build amazing sand waterways on the beach.
• Great listener of stories (zero echolalia).
• Extremely imaginative especially using stuffed animals. Imaginative with his hands using clay and sand, and creative with science experimentation kits. Not much of a builder or Lego ‘guy’ but will absolutely bring in an armful of boardgames and ask to play. (If unsure of directions, he’ll pull out the instructions and read them aloud. That’s huge!)
• Not only can he sit in church, but sits patiently By Himself in the row while the worship band practices (and while mom and dad are gabbing in the lobby with coffee before the service begins). Goes easily with the children’s group during service and I’m told does a ‘pretty good’ job of listening to the bible story and readily partakes in the activity.

NEWEST DEVELOPMENTS  Note: The changes below came within 3 months of Charlie commencing regimen of Magnesium Glycinate (100 mg/day) and B6 (25mg/day)**. The sleep changes and email from teacher came within 2 weeks of supplementation, while the marked decrease in whining showed itself after about 8 weeks.  The activities involving depth perception came at about the 3 ½ month mark.

• Puts himself to sleep each night without complaint at 8:30 by reading a book in bed to himself. Sleeps fully through night. Note:  Charlie started to go to bed significantly easier several years ago when we cleaned his diet. However, he would still go back and forth with us by coming out of his room. He frequently woke in the night and would climb in bed with any sibling who’d let him in order to fall back asleep. We honestly didn’t mind these small antics because it was in such stark contrast to the tantrums he’d have at bedtime coupled with waking at the crack of dawn. This latest development was unexpected.
• Received an unprompted email from teacher seeing a marked difference in focus and attention.
• Significant decrease in whining. In addition, shows greater restraint and does not whine and nag for snacks during parties when there is much ‘wrong’ food set out.
• After YEARS of trying, Charlie in the last two weeks asked ON HIS OWN to learn to ride bike. He knew I’d been withholding his iPad for months until he practiced bike riding but this hasn’t made a difference to him in the past. Charlie always struggled with any activity requiring depth perception such as scooter riding, bike riding, throwing/catching/kicking a ball.
• Can throw a football (??!!) and patiently does so with his brother. This came one week after learning to ride a bike.
• Can walk AND dribble a basketball. This came just days after football throwing. (Can I get an Amen?)

Is this enough evidence for you?! And PLEASE don’t think for ONE SECOND that this is atypical, and that my son is one in a million. NOPE, NOT TRUE.

Do you know how many recovery stories I’d read during those dark years with Charlie? HUNDREDS and HUNDREDS.  And I’d say to myself, “For EVERY story out there, there must be HUNDREDS and HUNDREDS that aren’t being shared.”  This is why I must share with you. I promised myself I’d add my voice to the recovery stories.  I PROMISED THIS EVEN BEFORE I KNEW HOW TO RECOVER CHARLIE.

Did you catch that last sentence? If not, here it is again.  I promised this even before I knew how to recover Charlie.

This is crucial. This shows I BELIEVED he would be healed. I had absolutely NO CLUE what to do but I KNEW he would be healed.

What We Believe Dictates Our Actions.

I believed he’d be healed and I looked every day for my next right steps. I Expected healing and I see it every day. Charlie has come so far but still has some trouble with focus and attention in the classroom. Handwriting is ridiculously hard for him. But I fully expect him to be able to sit focused and calm in any situation, and I expect him to have phenomenal handwriting. (Why not?)

Just like I ALWAYS knew he’d ride a bike. I SAW him ride that bike down the street YEARS before it happened. I watched him ride down the street today and I still am choked up with gratitude.   I SEE him handwriting with ease.  I SEE myself sitting in a parent/teacher conference and this is what will be told to me: “Mrs. Carrara, Charlie is doing unbelievably well. He needs absolutely no re-direction to keep him on track. He’s one of the most focused students in the room.  He’s a model for the rest of the class.”

BELIEF comes BEFORE the BEHAVIOR.

Now let me share a funny thing.  I would’ve been happy with half the progress my son has made since that horrible visit to the neurologist’s office. But that’s the beauty of the miraculous malleable brain. Once we clean up the inflammation, heal the gut, add the proper nutrients, we work with our child to unlock their possibilities.

And then, very slowly, we realize that what we had once hoped for our child is just a fraction of what’s actually possible.

So get on board. Believe what you never though possible. Because it is.

**Note: I have an interesting Magnesium/B6 story on my son Matt.  Charlie’s older brother Matthew, age 13 was also diagnosed with ADHD but he presents differently.  Matt is more the type of child who would get very angry at the drop of a hat.  When in this ‘state’, Matt struggled to calm himself down.  (He was the classic example of ODD, Oppositional Defiance Disorder.) In addition to his inability to focus, he also had a number of  facial and wrist tics.  I will put together a back story of Matthew in the near future because although he presented differently, the change in diet and nutrition was again the number one factor in his progress.  I look forward to September to see how he’s doing in school and will report on that as well.

Matt was on 200mg of  Magnesium/day and 25 mg B6 for 3 months when he began taking a higher B6 dosage (50mg/daily). He had done this by mistake.  YUP, Mother of The Year Award again snagged by Your Truly.  Seriously, he thought I had been giving him TWO B6 pills at 25mg each along with his 200mg of Magnesium Glycinate.  SO when he decided to handle his OWN morning vitamins, he dosed himself incorrectly.   This occurred for 10 days until I handed his vitamins on day 11. He looked down and questioned it and told me I forgot his 2nd B6.  I explained the proper dosage and over the next 3 days he went back to the 25mg dosage. By end of day 3 he asked if he could go back to the “2 pills of B6 because it took the ‘silliness’ away.” I was amazed that he could articulate this. So we went back to the 2 pills of B6 (50 mg) per day and by second day he told me that it helped the ‘silliness’.

Can I just tell you how HUGE it is that Matt would have the awareness of the ‘silliness’?!?  He’s typically the one I have to constantly re-direct for somewhat immature behavior (for his age). He had been taking the Magnesium (200mg)/B6 (25mg) for exactly 4.5 months when he articulated the feelings of ‘silliness’.  I can absolutely see a marked decrease in my need to re-direct for immature behavior.  Perhaps I should offer these to my hubby.:)