“Add it to the List”

So apparently, Jonny (my oldest) has been dealing with a learning disability that I wasn’t exactly aware of. I knew Jonny was getting help in school through his IEP, but I thought is was just “general” 1 on 1 help to get him caught up to his peers.

Jonny is smart and capable and works hard when motivated but has a problem staying self-motivated. When he doesn’t understand something, he doesn’t want to take the time to figure it out. He just gives up or skips over it. He has a tough time staying focused on the task.

He’s already been retained (held back) once in Kindergarten. We have him in resource room to work 1:1 with specialists for roughly half his school day and he does seem to be making progress, at his own pace. He also does 1:1 homework after school with my sister, who is also a para-educator. But he is still at least a grade level behind in nearly every academic category.

So I thought we might be missing something. Maybe we are dealing with some kind of learning disorder… Dyslexia? ADD/ADHD? I didn’t know where to start to have him evaluated so I contacted the school.

The school psychologist informed me that he had already been categorized with a “Specific Learning Disability,” which doesn’t sound specific to me at all. I guess it’s just one of the disability categories available to qualify students for the special education services he’s been receiving for a year. I didn’t even know “Specific Learning Disability” (SLD) was even a “thing.” So now I’m googling something my son apparently has that I haven’t known about.

I’m still going to pursue having him evaluated by a child psychologist for other learning disabilities, because one thing I have learned through all this stuff… As a parent, the more knowledge you have, the more support you can offer.

It’s interesting. When I look back… before autism, before IEPs, before we had any experience as parents, this would have been traumatizing for us. We would have been worried sick about stuff like this… about catching him up to grade level and classroom performance.

And now I’m like… “welp. Add it to the list.”

Also this week:

  • Jonny is missing eight permanent teeth. He is missing all four permanent front lower teeth (incisors). They will just never grow in. And he just lost one of his baby teeth that has no permanent replacement. He will need work done eventually.

“Welp…Add it to the list.”

  • Jonny has cavities and has to have two teeth filled. He will also need a tooth extracted. He will need to be put under for the procedure using general anesthesia.

“Welp… Add it to the list.”

This ain’t our first rodeo. We are already climbing a mountain in parenting and telling us how steep it is, isn’t going to change anything.

But when we first started our parenting journey… huh boy. It was a trial by fire. The first step of your parenting journey is when your expectations of parenting meet the “realities of it.”

You see, Jonny had a rough go from the start. He was born with bilateral hip dysplasia and a cleft palate.

This was our “first step.”

I wrote this in August of 2008. One month after Jonny was born…(excerpted from a blog I have since retired)

So today we took Jonny to the doctors office. Not the orthopedic specialist (that’s on Monday), not the cleft palate team (that’s on Wednesday), not the cranial-facial specialist, or the Ear/Nose/Throat Speacialist… not the Audiologist or the pediatrician …this time it was the genetic counselor and the genetic specialist.

So after providing the genetic counselor with a very lengthy family history over the phone, they met with us this afternoon. The combination of a cleft palate and a bilateral hip dysplasia may or may not be attributed to a congenital disorder. It could be something, it could be nothing…they don’t know. It vexes me because we have done so many genetic tests now (prenatal and post-delivery) I don’t see how they could possibly have missed anything.

And still they want to do more tests. Since he has a cleft AND the hip click AND a tiny bit of extra skin at the back of his neck, the genetic counselor wants to run a NEW set of tests. Apparently every cleft patient that comes through (regardless of results from any other tests) they want to test for something called velocardiofacial syndrome

Velocardiofacial syndrome
At least 30 different problems have been associated with it. None of these problems occur in all cases. The list includes: cleft palate, usually of the soft palate (the roof of the mouth nearest the throat which is behind the bony palate); heart problems; similar faces (elongated face, almond-shaped eyes, wide nose, small ears); learning difficulties; eye problems; feeding problems that include food coming through the nose (nasal regurgitation) because of the cleft palate; middle-ear infections (otitis media); hypoparathyroidism (low levels of the parathyroid hormone that can result in seizures); immune system problems which make it difficult for the body to fight infections; weak muscles; short height; curvature of the spine (scoliosis); and tapered fingers.

Also since he has a little bit of extra skin on the back of his neck apparently it can be a sign of Noonan Syndrome.

Noonan syndrome
Noonan syndrome is a developmental disorder characterized by unusual facial characteristics, short stature, heart defects, bleeding problems, and skeletal malformations. Eye abnormalities occur in up to 95 percent of people with Noonan syndrome. Problems with language and speech are common. Puberty for both males and females with Noonan syndrome is usually delayed for approximately two years. Most males with this disorder have undescended testicles (cryptorchidism) which can lead to infertility (inability to father a child) later in life. The majority of children diagnosed with Noonan syndrome have normal intelligence, but a small percentage have special educational needs, and some have cognitive developmental delays.

What bothers me is that we had tests done already for the genetic stuff and that all came back negative. Apparently that test was not necessary or they are deliberately trying to find things for us to worry about. These new tests include an echo cardiogram and another blood test. After I explained that he had already had a blood test and the specimen was probably still on file, they conceded that he would not have to have additional blood drawn and will take my suggestion of using the specimen already drawn. Score one for Dad.

So now we get to schedule another appointment. Echo cardiogram. *sigh

Monday is “D-day” so to speak with his hips. One of two hips is satisfactory with the help of the harness but one is still out of joint. If it is still out on Monday, they will opt for surgery to place the hip in joint permanently and he will have to be casted for 12 weeks. ick.

Wednesday is the first meeting we will have with a team of doctors who will hover around Jonny’s mouth looking to see the best way to ‘repair’ his cleft palate. double ick.

On top of that, Jonny is becoming more and more colicky. Crying sometimes the entire night (10+ hours) inconsolably, taking only 4 oz of milk between sobs in 8-10 hours (4 oz is usually 1 feeding). We’ve had Auntie over to help us and take a night shift with him to spread out the sleep. After 3 nights of awful awful wailing, my wife tried switching up the milk. Usually she thaws out some of the older milk to use before it spoils, but then when she switched the milk to the freshly pumped milk, he did better. Eating 2oz without fussing and falling asleep right away. She figures it might be dairy-related so my wife is going to try cutting out dairy for a week to see if it makes a difference.

We are both pretty burnt out with all the appointments and the lack of sleep (My wife still has to make appointments for herself. 6-week checkup, and an appointment with the dentist for a cavity to be filled)

ANNNNDD I am now working on my newspaper (collecting 40 ads, laying out 32 pages) so I am doubly tired..and it is now midnight. Why am I writing this now? …oh well now you are updated.”

Looking back I cringe reading it now. I want to tell those “young parents” that everything will be fine. It will all work out. That this is just a taste of the journey to come, and that getting through each trial will make them stronger parents.

I want to tell them that even though it will seem like it’s “sink or swim,” if they choose to swim, they will swim together. That they will be forced to rely on each other, even when they are sleep-deprived and constantly at eachothers’ throats.

I want to tell them that they are being prepared and shaped as parents so that they can deal with so much more in the future.

I want to show them Jonny today, the boy they are raising. He’s so much more than just a list of medical issues and eating aversions.

I want to show them how when he goes to spend 6 dollars of his own hard-earned money at the dollar store, he wants to buy a bag of marbles for his younger brother so he won’t feel left out.

I want to show them the boy who wants to go to church and attend every baptism service even when he doesn’t know anyone actually being baptized. Or how he will be baptized himself, of his own accord at age 8.

I want to show them the boy who during prayer time at Sunday school, wants to pray for the people in Israel who are constantly under attack, and the missionaries overseas.

And that when he is 8, a time when I was going to baseball and soccer practice, he instead wants to join a “Peace Club” they have at school.

I want to show them how when he is 9 years old, a time when I was idolizing professional athletes, his hero is Dr. Martin Luther King Jr.

I want to tell those parents that he will learn how to deal with bullies, and not in a way you would think. When others want to “stand up to the bully,” he discerns that the bully has no friends and seeks to befriend him instead, and will end up standing up to people trying to give the bully “a taste of his own medicine,” even when someone threatens his life for it.

I want to show those young parents the profound conversations he will have with them at age 7.

Jonny: “Why do people set off fireworks?”
Me: “because we are celebrating our country’s birthday.”
Jonny: “how old is our country?”
Me: “239”
Jonny: “wow that’s old! Is our country gonna die soon?”
Me: “I hope not buddy… I hope not.”  

And this one…

Jonny: Daddy, when I grow up, I want to be in the Army.
Me:“Why do you want to be in the Army, buddy?”
Jonny: “To get the bad guys. Just like Papa’s Daddy did.”
Me: “huh.”
Me:“You know, Papa’s Daddy had to be super-brave, and a lot of his friends died fighting bad guys. Are you sure that’s what you want to do?”
Jonny:“Well, if I die, I’ll go to heaven and tell Papa’s Daddy that I was a soldier too.”

You see, those hard times, that first step, is the beginning of a journey. And yes, it is the beginning of our journey as parents, but we must also remember that it is the very beginning of a journey for our kids as well. And when we are going through hard times, sometimes we just need a little bit of perspective, and that is something you will have in abundance when you look back at the problem, after you’ve gotten through it. Perspective.

I have learned that if we focus too much on the parenting problems now, we may miss the potential our kids have when they are older.

I’m not saying that safety and the well-being of our children should be overlooked. Keeping them healthy… keeping them fed. Keeping them clothed. Making sure they get to school.

But if we spend all of our energy on things like our kid’s academics and what they are learning…keeping up with their peers and their grade-levels, memorizing facts and numbers by an “appropriate time,” we may miss the person they are becoming and the character they are developing.

Jonny may be a bit behind developmentally. But what Jonny lacks in head-knowledge can be taught. And I have no doubt that Jonny will catch up. Eventually.

But the wisdom that Jonny has at such a young age is more than many adults will have in their entire lives. I can already see that he will be going places.

So missing some “permanent teeth” or having a “Specific Learning Disability” is not something I am too overly concerned about. It is just another part of Jonny’s journey.

Just “add it to the list” of things he will overcome to be the person he has been called to be.

Jason Reynolds
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Jason Reynolds

Jason is a freelance photographer and graphic designer. He is also a parent of Jonny (9) and Jonah (4) who was diagnosed with Autism in December 2016.
Jason Reynolds
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