MCT8 - AHDS Foundation

Tips on how to care for a non-verbal physically disabled person

Susan D. Fidek is the mother of Jonathan who has MCT8. Here she shares her many years of experience and wonderful advice on how to care for your child with disabilities.

I’m a special needs Mom with 32 years of experience

I have seen a lot of new parents ask why is my kid crying, why won’t they sleep, why are they arching and spasming like this, is it a seizure, should we put them on meds, why is he breathing like that does he have asthma and what do I buy them for Christmas? I’ve also had people ignore Jonathan or talk Baby Talk to him.

Let me address one important thing right off the start: Just because they are non-verbal, and fully dependent on you does not mean you should treat them like babies or dolls and taken advantage of! They are still human beings, with feelings and understand more than you give them credit for. So treat them with respect and dignity. Talk to them like normal human beings!

I’ve been a special needs mom for 21/22 years plus I helped raise my special needs baby brother for 10 years until he passed away. So basically I have 32 years of experience, caring for Non-verbal, fully dependent, high medical needs individuals.

I want to share with you some very important tips I have learned over the years. A lot of it just came naturally to me (I just knew) and others I have learned from experience. So some people it has to be taught and they need to make it part of their routine/habit before they get the hang of it and start applying it daily.

Not every child is the same

Just let me point out that you may need to take my advice with a grain of salt. It may not work in everyone’s situation and not every child is the same. I like to think of them as snowflakes; no two are alike.

Tip #1: Have Empathy, Patience and Observance

Tip #2: Develop an Acute/Selective Hearing

Tip #3: Treat them with Respect and Dignity

Tip #4: Never Assume the Obvious

Tip #5: Put Yourself in their Shoes

Tip #6: Change your Point of View

Tip #7: It’s NOT all about you! Don’t do something that only benefits you. Make sure it’s in your child’s best interest not yours.

Tip #8: When dealing with medical professionals: don’t enter the appointment on guard or defensive. Be kind and courteous to them. I find honey works better than aggression. Unless you are dealing with an arrogant Doctor than by all means set them straight! (I have had to do that once or twice)

Tip #9: When dealing with the public; yes even the ones that just stare and don’t say anything, I smile at them and if I’m in the mood I will ask them to come and meet Jonathan and tell them if they have any questions to just ask.

Now let’s break down some of these tips into examples of how I deal with and care for Jonathan. I find Tips 1-6 kind of blend together in most situations.

Don’t think that they don’t understand what is going on

They understand more than you think and are smarter than you give them credit for. You know that medical piece of paper that says the diagnosis for your child has an intellectual disability or that your child is only at this learning level? THROW IT OUT! Your child is smarter than what it says on that stupid piece of paper! So don’t talk baby to them or treat them like what it says on that piece of paper. Treat them the age that they are!

Example: Jonathan loves his Little Einstein’s show and Dora the Explorer shows, but he also loves sports and age-appropriate movies, books and shows as well. I let him watch it all. I myself still like kids cartoons as well. How did I know he liked sports or age-appropriate movies (like action movies, comedies, musicals, etc.)? I was observant. I was channel cruising one day, came across a car race and saw Jonathan get really excited and smile. So we decided to start letting him watch sports and he enjoys watching most sports but racing is his favorite. It’s the same with books and movies. I would look for his reactions, or asked him straight out: “would you like me to read to you this chapter book with no pictures instead of this children’s book? He would smile or reply yes. During movies we catch him laughing at the appropriate times so we know he’s liking and understanding the movie.

I speak to him normally. I speak full sentences to him. I have conversations with him. Some days he’s on the ball and quick to reply either with smiles, gestures, laughter or words. I understand is slurred speech. His teacher caught me having a conversation with Jonathan one time and she watched him reply with words. At first, she didn’t realize he could do that but later she learned to understand his slurred speech as well. Now he has his Eye gaze Talking Computer and some days he won’t stop talking (lol). Some days he’s not feeling well and you need to be patient and speak slower to him and give him more time to think and process what you asked him. I’m like that as well. If I have a headache, I’m not thinking straight.

Treat them like human beings, not like broken dolls!

Professionals should greet THEM first at an appointment then turn to the parent to see if they need to translate. Don’t treat them like a patient or number. Treat them like a human being!

When Jonathan was younger he would not sleep through the night. He would wake up around 2:30 AM screaming and arched backwards as if he was possessed. This went on for a few years. We had sleep studies done and found out he was having two different types of sleep apnea, but I don’t think that was the whole reason. I think he was just having major growing pains. He went through multiple growth spurts one year he grew 4 inches! Don’t you remember having growing pains as a kid? I used to get terrible leg aches when I was growing and they seemed to flare up in my sleep as well.

This is what I mean by being observant and putting yourself in their shoes or situation. They can’t tell you what is wrong. They are in a body that they cannot control. So they are dealing with their pain and discomfort the only way they know how! By arching and crying!

When he is in his chair and he is showing signs of discomfort, I first look at how he is sitting. Are his hips and back straight in his chair, are his arms hanging or on his armrest? Do I need to vent his gastronomy button? Maybe he has a buildup of gas bubbles. Maybe he has an itch or muscle spasm somewhere. Massage his back, arms and legs. Be observant. When did he start showing signs of discomfort? One time he just wanted us to change the channel. It was more of a disgusted sound and face vs his “I’m in pain or discomfort” face. Get to know your child’s different facial expressions and sounds. Jonathan has a pained laugh. It sounds nothing like his belly laugh, evil laugh, or manly laugh we know when it’s his pain laugh! He’s a boy! Like his dad he does not want to show his pain right away, he tries to laugh it off before he resorts to crying.

I’ve had OR recovery nurses mistake his spasms for seizures. I was there and told them it was not a seizure he was arching because he was gagging on the blood from his dental work. All they needed to do was suction him and he was fine! My baby brother had seizures and Jonathan had uncontrollable seizures when he was young. He had multiply types of seizures. I know what a seizure is and what a spasm is.

Jonathan has noisy breathing; strangers think he’s having an asthma attack. It is called stridor breathing. It’s the week loose muscles in his throat vibrating and making that noise. So I have to have acute hearing to recognize the different sounds of his breathing, so I can detect when he’s choking, has bronchitis or pneumonia. Jonathan can be in his room and I can be having a conversation in the other room and still hear him, so I can go running when he needs me. I will either stop the conversation or run to him and continue talking. Something my husband needs to work on. He’s an excellent father to Jonathan, don’t get me wrong, but he lacks some of these tips I’m sharing.

As for gifts: Again pay attention to what your kids like. If it’s a certain type of music, buy them a CD or An iTunes card to download their favorite music. Buy them their favorite movie; Buy them sensory things for their room. You can find cheaper ones on Amazon. If they love art buy them art supplies. Jonathan loves all these things as well NASCAR themed stuff. Whatever he is interested in at that time we buy for him. It doesn’t have to be baby toys just because they can hold it in their hand or it lights up and plays music. You can find age appropriate stuff that works just as well.

Respect and Dignity

Like I mentioned before don’t treat them like babies or dolls just because they are nonverbal and fully dependent on you.

Talk to them and tell them what you are doing or going to do so they can expect it.

Example: Jonathan needs help with dressing/ everything. So I try to respect him and tell him what I’m doing as I do it. He sometimes rejects some things like washing his face (he flat out yells “no” at me) I tell him: “I understand you don’t like it but you still need your face washed or your zits will get worse”. At least I let him know what’s going on. I tell his when I’m going to roll him onto his side to put the sling under him. We do this thing where we count to 4. He gives me four seconds to place it where it should be and then he will start to roll back. Some days he doesn’t count and tries to roll back right away but I just tell him I’m not ready and he was supposed to count to 4 first. It’s nice to tell them what’s going on or what to expect so that they don’t feel helpless like a doll or a baby. I even ask him which movie he wants, which book, which top or pants. I give him choices and let him reply. Some things we argue but that’s the joy of it. It shows me he understands and he replies like a typical teenager/young adult.

I like to dress him in style, like a fashionable young gentleman. Yes, he drools lots so I buy him a bandana which is still stylish and I have a blanket tucked on the side of his lap (hiding from the public to catch bigger drips) because I want to treat him with respect and dignity. I try to catch the drips for him so that he always looks presentable. They do not need to be wearing big bibs or other clothing that makes them look more disabled than they are.

Like I mentioned before, put yourself in their shoes! How would you feel sitting in one spot for that long and no one helping you fix your position? Or you hand an itch or a muscle spasm or someone just rolled you and flopped you around without talking to you or warning you? Or let you drool and wear a large bib without helping you. Wouldn’t you feel helpless, embarrassed, frustrated, or angry? I know I would. Slow down, help them and talk to them. Show them respect and dignity.

As for Medical Professions: I have dealt with a lot of nice ones that treated Jonathan and me with respect and talked to him before talking to me. I’ve even become friends with some of them.

Then there were others with Zero bedside manner that showed Zero respect and Jonathan was just a number or a cash sign and nothing more. One Doctor looked at Jonathan and told us Jonathan was a lost cause and he couldn’t help him. I phoned the Doctor and left a message on his answering machine saying that he was not very nice or professional and thought he was very rude when he told us Jonathan was a lost cause.
I said: “You were our last hope! You were supposed to help Jonathan not tell us he’s a lost cause!” After that, the doctor was always on his best behavior around me and treated us with respect. In fact, this particular doctor even signed the forms so Jonathan could get his Wish Granted to go to Walt Disney World! Like I said sometimes you have to remind the doctors why they went into that profession.

I hope this explains most of your questions. I have always been a kind and courteous person. I was shy and squeamish until I had Jonathan. I have learned to be his advocate and nurse. I’ve dealt with seizures, choking and calling 911, putting in nasal gastronomy tubes, changing gastronomy buttons (open hole to the stomach), dressing woods, dealing with wound infections, explaining his medical condition to doctors that know nothing about it, and not fainting at all the needles that he has to deal with. Surprisingly I stay calm and collected through all the procedures and then deal with a migraine when I get home from the stress and worry but don’t let it show until I’m home.

We try not to medicate Jonathan unless it’s absolutely necessary because a lot of meds make you lethargic or change your personality. We defiantly don’t do it because we are tired and want him to sleep (it could affect his nighttime breathing). We look at all the options and side effects before making a decision. We don’t feed him orally just because we feel bad eating in front of him, because we know he can’t swallow it properly and he could get sick from it going into his lungs. He’s been tube fed since 9 months old he doesn’t know what food tastes like anymore. These are all examples of it’s not about you it’s about what is best for them. You are a mother. Okay so we have to do this for 21 years instead of their first 2 years, but it doesn’t mean I’m going to quit on him. So what if I still have to deal with bodily functions. Not like I didn’t have to before! You are his mother. Suck it up buttercup!

It has been a long hard journey of trials and guesses but we made it through! I have a happy, handsome, well rounded young man that has gone on many adventures with us. I wouldn’t have it any other way! Just be Empathetic, Patient, Observant, an Excellent Listener, and Treat them with Respect and Dignity!

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