I have posted many times on this blog about my youngest son and the issues that have faced him in life. I went back through yesterday to try to find the perfect post to repost, or link to and found that he's been so frequent of a subject, I just couldn't pick one. I also found, that I've posted the poem that I wrote for him, about him about a dozen times. It will be posted, again, at the end of this post.
I don't know how to express what I'm feeling ... when he was born, he was SO sick. He had neonatal myasthenia gravis, only we didn't know it. The symptoms were severe, but they did not know it was MG because they did not know that *I* had MG. I'd been misdiagnosed with everything from pre diabetes to post partum depression (Should I see a psychiatrist if my depression is making me this ill? Doctor's response ... "No, you need to stop being a baby about being a new mother" and she walked out of the room. Making matters worse, we found out that she'd actually TESTED me for myasthenia ...and gotten positive results on ALL the tests, but chose to decide they were not true and I was malingering ...yes, she used that word on her report to my PCP)to Chronic Fatigue Syndrome ...
So Benjamin is born ...and not healthy ...and before he's even 2 months old ...he has a GI specialist, a pediatric neurologist referral and a pediatric orthopedist and pediatric endocrinologist as well as dermatologist!!
The day after he sees the pediatric neuro, at 2 months and 2 weeks old ... I fell ..and was hospitalized ... and diagnosed with myasthenia gravis. (Oh ...so I'm really sick?)
The pediatric neuro finds much to be concerned about with this child ... possible seizures, bad muscle tone (Neonatal MG only lasts for the 6 weeks the mother's antibodies are in their system ... so by the time he saw him at 2 months, the MG was gone ...however, he still had significant problems) and poor reflexes.
By summer, the neuro gets very concerned, he doesn't like the shape of his head ...and it seems to be changing. Off to CT scan and MRI we go ...to find out Bj's brain did not fully develop (bi frontal lobe atrophy) as well as Craniosynostosis and Arnold Chiari Malformation type 1.
I sat in the neuro's office staring at the views of my son's brain ...the malformed brain clearly visible ... brain where there should be no brain (ACM) and no brain where clearly there should be brain ... was not an easy sight for a mother to see.
I was devastated ... to say the least.
At 9 months old, he could not eat baby food, he was unable to swallow the food. He could not roll over ... and was ...essentially, not much farther than a 2 month old baby in development. We started on speech therapy to teach him to eat .. .physical therapy to give him strength ... and occupational therapy ..I don't remember what we did.
We worked hard ...and hard ... and hard ...and at home we worked with him, played with him and loved him.
When he was a year old, his PT was thrilled ... we have a miracle on our hands ... that's what he said. He was sure that he'd have Benjamin walking in about 3 months. That would put his first steps at the bottom rung of normal ... but he'd be there.
THIS was exciting news.
He turned a year old the week before Christmas ...and 2 days after Christmas there was a balloon across the living room from him. He pulled himself up on the couch (WHAT? HOW??) and took 4 steps to retrieve the balloon!!!
My father got the pictures ... we were stunned. It must have been a fluke! We stood him up and my father held out his arms ..and Benjamin ..who just 3 months earlier couldn't turn over, or eat ... and who the PT thought he'd have walking in 3 months ...toddled over to my Dad.
We went to PT the next week ..after a weekend of stepping ... and I was not going to tell the PT, I wanted him to be shocked in therapy. We walked into Children's Medical Center and the PT saw my face and fell to the ground. "You're kidding!"
My face, evidently was not a poker face.
Speech ...did not come so easily .. at 18 months, he had zero words, and really did not communicate at all. Didn't point when he wanted something to drink, didn't let us know when he was hungry ... just smiled, laughed and giggled ...
So, the SpT thought maybe, we should start him on signing. She taught him the sign for "more" ..and he did it back ....and got more cheerios ..and he smiled ...and did it again ...and caught on just that quick.
Within 2 weeks, he had over 35 signs. (It helped that I knew sign language). Suddenly, he said "more" and then later in the day "Drink" and then later in the day
As he hit 3 we started to try to get him into the developmental preschool program. He had a diagnosise of autism (PDD) and developmental delay, they were quite obvious in his skills ...
but the school chose to fight us ... which, led into a due process (we won) and the next year another (we won) and the next year ... he got into a school called Little Light House, my Oasis ...my year of rest ... my relief.
A christian school for children with special needs ... for ages 0 to kindergarten ... and ... they provided speech, PT and OT ... and I did not have to fight with the school system or take him to therapy. He got it all ...and he thrived ..and he did well. And he only got one year because of his age ... and he graduated ...one of the saddest/happiest days of my life. He'd made so much progress ..learned to socialize a bit ...and learned to ride a tricycle.
But the peace, the comfort and the gentility of TLLH would be over and back to the public school ... we had to go.
It took 2 more years of fighting to get them to agree to give him services. Then, the fight continued clear through the 7th grade ...when we yanked him out of the school after he was beaten up so badly the bruises didn't heal for 3 weeks ...and they couldn't/wouldn't guarentee his safety.
During this time, he went to an outpatient Occupational therapy program ...and got therapy for the sensory integration dysfunction that so often goes with PDD... and something happened.
He started to look people in the eye ..and stopped spinning ... and he started to interact ...and we realized ... he wasn't autistic!
His speech patterns were odd ... auditory processing disorder ...really interferred with his ability to process speech. We were shocked to go to the movie Star Wars Episode 1 and hear Jar Jar Binx speak in what we called Benjaminese!!
He was 10 when the PDD diagnosis was removed. But he still had an IQ below 75.
Things were still HARD for him.
But he worked ... and he worked ...and he fought hard against the odds ...
and he came up for a 3 year review ..and something odd happened with his IQ score ..it was over 90. That's normal!!!
His non verbal IQ score was still below 70, so it was significant learning disability ..and he stayed in special education.
During all this time ..the neuro is working with us ... a diagnosis of
OCD came about age 3
Tourette's Syndrome came about age 5
Epilepsy came around age 6, confirmed in 4th grade with a grandmal seizure.
Excema ... he was terribly allergic to dairy and had a rash from the time he was 1 day old, until he was 11.
Then one day, he talked his dad into buying him an ice cream cone ..and he broke out ...BAD ...head to toe ...and then .. he never broke out again.
He could suddenly tolerate milk.
At 9 years old, he was on 11 different prescription medications.
He had a pulmonologist
Orthopedist (who didn't do much other than say that we should have gone ahead and put him in the foot braces as an infant, and here put these orthotics in your shoes)
One by one ...the doctor's stopped seeing him ..except the neuro ...
It was amazing to find him discharged from the clinics ... as medications started to be removed one by one. Each one felt like a miracle ...
Then last fall we realized we were down to
A pediatric neuro ..and 2 medications and 2 OTC meds.
And the pediatric neuro removed the 1 medication ... EEG was clear ... no more anti seizure med ...
and gave Bj the option of the medication for his tourette's syndrome ...Bj chose to stop it.
And yesterday, we went to see this neuro that Benjamin had seen since he was 2 months old ...and we talked ...
and the neuro grinned.
And told Benjamin how proud he was of him. How happy he'd been to be able to watch the him grow, change, develop ... and
discharged him from the clinic!
Benjamin is now on benedryl and melatonin ... for allergies and to make sure he sleeps good (we don't want those other problems returning for lack of rest)
and a rescue inhaler for his asthma ... but he hasn't used it since August.
His IEP is set up for his plans on going to culinary arts school ... and possibly college.
This little boy, who we never knew if he was going to walk, or talk ... and when he did ... it wasn't ok ...
Is now 16 years old ... popular ... and thriving. (complete with driving mom nuts!!)
A MOTHER'S HEART
Every mother has Dreams,
Of a child perfect and whole,
Every mother has Hopes,
For perfection, body and soul.
They told me you're not perfect,
Sweet loving child of mine,
They told me that your learning
Is taking too much time.
They tell me that your tests came back,
Showing problems and low scores,
They tell me that you have to struggle,
This hurts me to the core.
Every mother has dreams,
They tell me you don't fit.
Every mother has hopes,
They say perfection you won't hit.
But they don't see what I see,
The smile that lights your face.
But they don't hear what I hear,
Your laughter reveals God's grace.
They don't see what I see,
My child loving and whole.
I have Hopes and Dreams,
Because my child you are a gift from God
And you have a PERFECT SOUL.
Written by Peggikaye Eagler
January 30, 2000