Hard Decisions & Soft Hearts

As some of you may know, I sometimes blog about my son, Kaden. I have recently received some comments from individuals seeking to know more about him and my experience. So here, I have given a more detailed account of my journey. For those of you who don’t know, Kaden is developmentally delayed. What does that mean? What’s daily life like? How do I deal?

Early on, I discovered there to be a vast range of what people consider “special needs”. It’s an extremely broad term. It refers to anything from ADHD, the Autism Spectrum, Downs Syndrome, Fragile X, Developmental Delays, and many other things. So I would implore you to ask more questions if someone ever says “(name) is special needs”. Additionally, there is a scale of severity when dealing with many of these issues. Some children with special needs, like my son, are capable of a great many things, will learn and hopefully eventually catch up to his peers and go on to lead what we would consider a “normal life”. Others may need assistance well into adulthood. That doesn’t make them any less human.

So my personal experience. I gave birth to Kaden eight weeks early, at about 32 weeks, and he spent the first 26 days of his life in the NICU. It was the longest 26 days of my life. At a time when you’re supposed to by happy, holding your brand new baby, napping with them and kissing them, I had a much different experience. During his NICU stay, I was bombarded with information and possibilities. The doctor said things like “he may have some delays” and “physically he will likely catch up by age 3, but he may experience developmental delays including speech” and “there is a likelihood he could be ADHD”. I thought to myself “how do they know all this now?” and largely listened but told myself “not my son, no way.” Well….yes….yes way.

When Kaden started preschool at age 4, he was almost completely nonverbal and still not potty trained. I can assure you, it wasn’t for lack of trying. I had a very hyper, very stubborn little boy. Upon starting school, I approved the school to evaluate him and sure enough I was told he shows clear signs of developmental delays. I would then work with the school to develop an IEP (Individualized Education Plan). What’s that mean? Well, while other children were learning their ABCs or number counting, Kaden (while also hoping he picked up on those things) was focusing on adaptive social skills, taking simple directions, focusing on one thing for a period of time. All things we take for grantedimage3.

As he started Kindergarten at age 5, it was apparent he needed to be evaluated for ADHD. Google is my friend, and he was displaying far too many symptoms to leave it alone, including aggression. I would have taken him in sooner, but most places require the child to be age 5 first. I waited nine months for an appointment at the (not to be named) Child Evaluation Center. Some urged me to go somewhere else, but when you’re dealing with something like this, I felt it best to wait for the best.

The appointment consisted of me, my son, an MD doctor, a psychologist, and a grad student. It took them all of five minutes with my son to know he had ADHD. They said “we know he has ADHD, now it’s just a matter of what to do to help him.”

It broke my heart. But also gave me some hope. I had a diagnosis. I had a path forward. For those of you wondering about Kaden’s symptoms and level of daily activity, I’ll try my best to explain it.

On a typical day, it’s hard to say what kind of Kaden I will get. Some days, he’s very well-behaved. He is helpful, nurturing, quiet, takes direction well. On the hard days, he’s combative, stubborn, aggressive. His aggression is never with malice, I want to make that very clear. Kaden fixates. If he for some reason gets focused on his dinosaur stuffed animal, it will be the only thing he plays with for several days. Before his birthday, he fixated on wanting a Paw Patrol toy from the store. Every other comment he made for two weeks was “Paw Patrol toy from store”. I repeatedly told him “no, not yet, you have to wait.” I am not exaggerating. He does not respond to being told “no” in a normal fashion. Some children may get mildly upset, possibly huff and walk off in a moping manner. Kaden, more times than not, will have a complete meltdown. He understands what “no” means, but often times I think he doesn’t understand why he can’t just have what he wants, why it isn’t that simple. He will express to you, most ardently, his disdain for your answer. My son throws tantrums. He works himself up to a place it is very difficult to get him back from. He throws things, screams, cries. He is physically violent towards me. I have been hit, kicked, pinched, and bitten all while attempting to calm him down. It usually requires a very tight bear hug and deep breathing for a period of time.

When Kaden was an infant in the NICU, we practiced kangaroo care often. He would lay on my bare chest, skin to skin, and we would nap and relax. If you don’t know what kangaroo care is or its effectiveness, I would encourage you to look it up. During times of great stress and high emotion (ie tantrums), I place Kaden in my lap, almost force him to lay against my chest the way he used to, and I breathe deep enough, hard enough, and loud enough, that Kaden has no choice but to get in rhythm with me. And this is how I finally calm him in most situations. And I didn’t mention it before, but I do so in isolation, away from everyone else.

Kaden and children like him were born into this world before their nervous systems were ready. Everything they experience getting here, shocks their system. Bright lights, noise, touch. They aren’t ready for it. And their body plays hell trying to regulate from then on. Kaden requires occupational therapy. He needs sensory activities and large amounts of physical stimulation in order to regulate.

Kaden requires speech therapy. Granted, he is WAY ahead of where he use to be. In the past two years, he’s gone from nearly completely nonverbal to being able to form 4-5 word sentences. I know what you’re thinking. 4-5 words? That’s not much. But for someone like Kaden, it is a mountain. Most people can understand most of what he says. The way he pronounces many things are still lacking. Part of his speech therapy is being able to identify parts of speech and what words mean. Answering abstract questions like “why?” is not something he does well. Where, when, what, are all concepts he’s mostly mastered. At age 6, Kaden has no concept of time past tomorrow and today though.

His IEP in school also lists one-on-one time with the special education teacher for additional instruction. All this, and last year Kaden failed kindergarten. We all knew it was going to happen but we pressed forward the best we could. I have to wonder sometimes if it hadn’t taken 9 months for an evaluation if that might have helped but I don’t like to think too much on it. Over the summer, Kaden got his evaluation. His official diagnosis being “developmentally delayed and ADHD”.

Now try not to be so set in your mind about certain things. I for one am a huge believer in not taking medication for every single little thing you may have. I take one medication a day for having HSV type 2. I won’t touch cold medicine unless I’m near death. I do take headache medications for my migraines when needed. When I had my wisdom teeth taken out, they gave me 15 pain pills for 3x/days. I believe I took may 7 of them. But for the most part, I believe in letting your immune system do the work, as it is meant to. No, I don’t judge people who take medications. That’s their choice. I’m not righteous about it. It’s just my choice.

So I was pretty opposed to medication for my son. Over the past two years, I made every effort possible to find a solution for Kaden that did not include medicating him. But nothing worked. So when the doctor suggested a low dose, short acting ADHD medication, I agreed to it, with tears in my eyes and a lump in my throat. What made me feel better about it was the doc’s opinions about medications and how they should work. “I want the same kid, just a little more calm” he said. “He shouldn’t be a zombie, that’s a medication failure in my opinion”. So with that, and over the course of the past two months, Kaden has been settling into his new medication routine. Surprisingly enough, he swallows pills down with no issues. I was very worried about this prior to starting.

Has it made a difference? Yes. Some. Was it a magical pill that suddenly transformed my son into the calmest, most focused individual in the world? No. The thing about these medications are they take time, and usually need to be adjusted a few times before they’re perfect for the individual. If I had to guess, my son needs a SLIGHTLY higher dosage that lasts longer. Right now, the short acting means the effects of them wear off in about 4 hours. So Kaden takes it 3x/day. What we’d eventually like to see once we get the dosage correct, is one pill a day that lasts roughly 12 hours. Nevertheless, it has helped. My son has thrown less tantrums and I have been able to have him focus on a task for longer periods of time. Again, not perfect, but more manageable.

Kaden has a very difficult time falling asleep. The kid is halfway to insomnia at this point. I do give him melatonin in low doses to help take the edge off and relax at bed time. Sometimes it helps and sometimes it doesn’t. That’s just the truth. Often times, I have to help him fall asleep by laying with him and keeping him calm.

What do I do at home? Right now, going into Kindergarten for the second time, we focus on the alphabet. I don’t want to only point out what Kaden can’t do so let me start off by saying that Kaden can spell his name out loud, he knows all of his colors and shapes, he can count out loud to 10 alone and to 20 with a little assistance. Kaden can name every main dinosaur you put in front of him. He knows how to sort small, medium, large, and the differences in concepts like big and small. He can express if he is feeling happy, sad, angry. He is completely potty trained including through the night. He can dress himself head to toe without assistance (except for the occasional item that is on backwards).

In all my dealings with teachers, doctors, counselors, specialists, psychologists, and even strangers, one thing is apparent to everyone. It is the one comment I get more than any other. Kaden is such a sweet boy. He is a hugger. He will introduce himself to literally anyone (scary for me lol). He has a big heart. He tells me he loves me twenty times a day. He tells me he misses me too. I used to say “You miss me? But I’m right here.” But now I just say “I miss you too, buddy.” It’s just what he says.

So like I was saying. We focus on the alphabet. Flash cards are our friends. I read to him, but he has no ability to read just yet. I believe reading will be his biggest challenge. He can count objects on a page, so perhaps the basics of math will be easier for him since it is most visual. But reading presents challenges all around. His speech doesn’t allow for all the letters to sound they way they should. He can’t yet grasp all the sounds of letters so we have a long road before he will understand what they sound like when combined.

Which brings me to some hard choices I have to make. Not hard in your typical way, but hard in pulling them off I guess you could say. Over the summer, we relocated to a much larger city. The school system here is confusing. I consider myself a fairly intelligent person, and it has me thrown. Everything is in what they call “clusters”. The city has like 100 elementary schools alone. Where we moved from, there were like five maybe. And kindergarten was in a completely separate building on its own. To say I lack confidence in this school district is an understatement. I know my daughter will be ok, however. Kali is so smart. She has above average scores and will not be lost in such a large system. But Kaden, I worry about. The doctor that diagnosed him already recommended getting him additional services beyond what the public school system could provide to him because he is in need of them.

image1.JPGNow don’t get me wrong. I went to public school. I turned out just fine. I think many public schools do a very good job with the resources they have to provide a quality education. But for someone like my boy, I am not confident. I know they will do their absolute best to give him as much as they can, like the school he attended last year. But as a mother who wants her son to succeed and push past these obstacles and eventually not need these kinds of assistance anymore, I am not sure it will be enough. I worry.

There is a private school here, fully accredited, for only children with special needs. They range from children like my son all the way to those who will likely need assistance into adulthood. From what I have heard so far, it sounds like a pretty amazing place, a place capable of giving my son more of what he needs. Like the choice to give him medication, sending him there would both break my heart and give me hope. It would be yet another thing in my face saying “your son is different” and also something that says “yes, ok there is hope for the future, there is a path forward”. The price of getting him what he needs? $12,000 per year. That’s IF they don’t consider him a tier 2 student, which is $14,500 per year. How will I afford it? I have no idea. But as a mother, I will do everything in my power to provide my son what he needs. Even it means I eat noodles and peanut butter for the rest of my life and work two jobs.

I struggle every single day. I worry every single day. About every choice I had made for him, about every choice I will make for him, about how people will see him, about how they will judge the choices I did or did not make. I want Kaden to have friends. I want him to go on dates. I want him to drive a car. Get a job. Go to prom. Graduate high school. Go to college. Play a sport. Fall in love. Get married. Make me a grandmother. If he wants. I want him to do and be whatever he wants to be. And I will do everything in my power to make sure that is exactly what happens.

The price of happiness? $12,000 a year. We make sacrifices for our children. We bleed, we sweat, and we cry. One day, he will walk across the stage to collect his high school diploma and I will be in the sea of parents, clapping and crying, and it will have all been worth it. Every single moment, every single cent, every single tear.

 

 

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