It's The Little Things

It’s disheartening to hear so much sadness from parents who have children on the spectrum. I know days can be long and tasks arduous and I understand the feeling of isolation. I understand it all too well. I guess part of my sadness is knowing what it’s like to be the kid instead of the parent. I could sense my parent’s shame and embarrassment when my behaviors indicated I was anything other than the perfect child they wanted me to be. There were times when they’d rather not have to introduce me. It was easier for them if I were sitting in a corner reading or hidden away in my room.

Here I am, mom to my son who is also on the spectrum. When I look at him I see a precious blessing. On the hard days, I give thanks that God gave me plenty of patience and tenacity. The good days are filled with smiles and laughter and lovely moments as I watch my son skip and leap around our home. I wasn’t allowed to be so free when I was growing up. I wasn’t allowed to show who I really was. I welcome these things from my son. It’s an opportunity for him to express who he is in that moment and how he feels about the things he sees and experiences. I wonder, would he be so free if I felt shame and he knew it. Don’t think we don’t know how you feel. We do, even if we can’t verbalize it or not able to respond to it. We still know and it resonates with us for a very long time. Forever even.

Our children whether severe or otherwise are able to reflect the loving kindness that is showered on them. They can also reflect other emotions as well.  Just a few weeks ago I was getting ready for a presentation. My anxiety was higher than normal because I’d just learned that morning they were going to videotape the session. It was hard enough just dealing with having to present. Anyway, I was caught up going through all the steps, making sure not to forget  anything. Somewhere in the course of the morning ( I’m not sure when) my son went into my room and made my bed. He’s never done that before. When I saw what he did, I stopped and took a deep breath. What a wonderful thing my son had done. He knew how important it was that my bed was made. I usually make it as soon as I get out of it, but this morning was different.

You see, I’ve also had a few short-term health issues. My son was an infant when I had a major asthma attack. My mom came out to take care of him for a day. When she saw I was strong enough to crawl she left me to care for my son on my own. When he was a toddler I had pneumonia. We didn't have any help then. I managed to crawl to the kitchen to get cereal, milk, juice, and water to drag back to my room so I could feed him without having to leave my bed. He remembers. Even now when he sees my bed is not made it worries him. In addition to that my son also knows on normal days, I always make my bed. Clutter kind of makes me freak out. It’s very hard to focus when the lines around me are somewhat off. So it’s important to have things neatly lined up and my bed made. I went into my son’s room to give him a big hug and thank him for helping me.

I believe my son remembers some of what it was like when he was very sick, how I took care of him and watched over him day and night always reassuring him that everything was going to be alright. In his own way, he's returning the love. Whenever I’m not feeling my best he brings his stuffed friends into my room to watch over me as I sleep.

The things we don't speak about or even think that much about will be the very things our kids carry in their hearts and memories for the rest of their lives.

It’s the little things that mean everything.

 

Is your Child’s Care Provider Properly Trained?

One of the great dilemmas for many parents is finding appropriate care for our children. It’s hard enough in the most typical of situations. So how much more difficult is it when your needs are anything but typical? We’ve been very fortunate. My son has been receiving services for most of his young life. He’s had physical therapy, occupational therapy, hippotherapy, music therapy, community, training and respite care just to name a few. And like anything else, there’s going to be good and bad, ease and challenge. In as much as we are familiar with the process of picking and choosing whose charge our children will be left, it is no secret that the pickings are slim at best.

Are you familiar with CAP or Innovations Waiver Programs? These programs are federally funded and pay for services that regular Medicaid does not cover or may only offer minimal service. It’s through these services that I’m able to obtain a few hours of care and training for my son on weekdays and respite care when needed. I’m thankful for these services. Without them, it would not have been possible for me to work and take care of my parents as their health failed them. There were mornings when I’d drop my son off at his carer’s home at 4:30 am, take my parents to their various appointments, go to work and pick my son up around midnight. In addition to the long hours that were sometimes needed, my child was all but adopted by his carer’s very large family. He had an endless supply of playmates and play dates. I can’t begin to tell you how much I appreciated the level of care he received during those stressful times. She was one in a million. Unfortunately, we’ve had our share of carers on the other end of the spectrum. They were always kind but frequently called out sick, claimed the hours as if worked and unapologetically forged signatures on timesheets. Interestingly enough as we flitted through a few more carers it became all too obvious that the pool of choices contained more of the latter.

It’s becoming increasingly difficult for organizations to find good candidates to fill staffing needs. Oftentimes the candidates applying have a “barely there” work history, inappropriate training and a less than impressive attitude. 

The level of “training” does not support the standard of care required for persons having diverse needs.  In other words, in many cases, the “training” is inappropriate for many members of the population that is being served. I’m sure the overseeing bodies (MCOs) are aware to some degree but do they realize how inadequate the training is? Our children are in the care of people who are ill-equipped to provide the level of care needed especially in times of emergency.

Parents, we need to know what training is available to the people providing care to our children. Knowing if the trainings are well suited for your child's needs is just as important as knowing the care providers criminal history. It all comes down to being sure our children are safe when in the care of others.

Part of the required training that my son’s carer received is a training on what to do if you find a person unconscious, how to perform CPR, how to use AED (automated external defibrillator) and what to do in incidents of choking for a child, adult, obese and pregnant persons. All scenarios for the choking portion of training involved food items. There were no scenarios for what to do in cases of choking on liquids. As a young child my son had great difficulty with thin liquids and choked frequently. Once he took a gulp from a cup of juice his carer left on the table and chocked. I ran over to him to lift his arms and asked his carer to get a vial of albuterol and his nebulizer. The carer froze. She was not able to respond to any of my requests. I had to pick my son up and get the medicine and nebulizer myself. What would have happened if I weren’t there? My son’s QP (Qualified Professional) knew thin liquids were a hazard for my son. Why was this not discussed during the first aid training?

Upon further review the first aid training video I noticed there were no scenarios or mentions of people with physical or intellectual disabilities? Aren’t they the people services are being rendered to?! How is it that there are no references to disability during First Aid training for carers providing services for persons having disabilities? From what I can tell, there has been little thought or consideration for training on adaptive first aid methods. That being said, here are a few topics I’d like to see discussed during first aid training for the caregiver of persons having disabilities.

·       How to perform the Heimlich maneuver on a person who uses a wheelchair?

·       How to administer CPR or use AED (automated external defibrillator) on a person who uses a wheelchair?

·       What to do when a person having an intellectual disability appears to be going into cardiac arrest.

·       What to do if it’s not appropriate to ask the person having an intellectual disability if they are allergic to aspirin, have had a recent bleed or have stomach ulcers.

·       What should be done if the person needing help does not understand the questions?

Do you take a chance and attempt to give them aspirin anyway?

·       What should you do if the person you are attempting to help begins to fight because they are frightened and do not understand what’s happening?

These are just a few questions that come to mind.

What can be done? One thing first aid trainers can do while showing a training video, a pause during each section to discuss what should be done for individuals having physical or intellectual disabilities. Perhaps parents can be involved in the process by increasing awareness of the need for adaptive first aid training to be available for care providers.

I did a search for information on first aid for disabled persons and found very little. Here’s a video on how to perform the Heimlich maneuver on a person in a wheelchair?

How to Perform the Heimlich Maneuver On Person In A Wheelchair

This is could potentially become a desperate situation if we don’t make a motion to push for better training of care providers for disabled persons.

Making a motion toward the provision of cohesive services for disabled persons.