Monday, March 12, 2018

My Epic Fail: Facing the Reality of My Neurodiversity

Today I experienced an epic fail. No, it’s not my first fail, but it hurts like it’s the first.

I was scheduled to present for the I/DD (Intellectual Developmental Disability) block of the CIT (Crisis Intervention Team) Training. I’ve presented once before and did well. And though my anxiety was up the first time it did not get the best of me. I’ve been struggling with anxiety for the past couple days. I thought I’d be able to pull everything together as I’ve done a few times in the past. I was honest with the attendees who clearly saw I was struggling. I made a push to continue and then it happened. I stuttered, flailed and fumbled through parts of my presentation.  Abandoning the slides in order to wing it, I managed to come up with a couple examples and muddled my way through a few questions which helped momentarily but when I turned my attention back to my slides anxiety tightened its grip. About 10 minutes into my presentation everything came to a screeching halt. I couldn’t fight it anymore so I gave up. There was nothing left to do but to render my apology, which I did several times.
Members of the team were quick to respond, interjecting positive facts about my past accomplishments. I appreciate their efforts.

Today made me face a few facts I had not been willing to admit. I hate when my traits show. I hate the pressure of the expectation to be “normal” because I don’t look autistic. I especially hate when my diagnosis is revealed and I’m thought to be better than “normal” because I have Asperger’s. I hate where I landed on the spectrum, somewhere between brilliance and mental retardation. I hate that I never developed study skills, but who needs to study when favored subjects come so easy. I wish I could get past my shortcomings? Will I ever get past my shortcomings?
After leaving the training I called a good friend to share my failure. She said to consider it hands-on-experience for the first responders. She further stated it was an experience they needed to have, to not only know that I know what I’m talking about but to also see it first hand. I tried to see things from her perspective, but the pain I felt made it difficult at the time. I also shared my story online in my favorite group and was told a similar thing. The person from the group told me I should consider my experience a gift to those in the audience who may suffer like me. I see what they are both saying. I’m just not there yet.

There are so many things I want to accomplish. I thought pushing past my flaws and making my best effort would help me to do better, but it’s not. For now, it is what it is. Then again it could be this way forever more. I don’t know. In the meantime, I have to make a decision. Do I continue attempting to pushing past my limitations or do I lick my wounds and hover where I’m most comfortable?

 

Wednesday, February 28, 2018

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.
 

Sunday, February 4, 2018

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.

Tuesday, January 30, 2018

In Case of Emergency, Pt. 1


When it comes to autism the world is already overloaded with an incredible amount of facts, myths, and misconceptions. I don’t want to add to the overload. I do, however, want to share information that I find many people I’ve encountered don’t know or haven’t thought about. One such subject is what to do in case of emergencies. On rare occasions, I get to sit and chat with other moms who have disabled children. We talk about the usual drudgeries of housework, meal planning, work woes, endless errands and sleepless nights, but we never talk about emergencies and what to do. So I figure this is a great place to start the conversation.

My son is a teenager diagnosed with autism, epilepsy and is non-verbal. I’d like to think of my self as a fairly savvy mom, having all the checks and balances when it comes to my son’s needs. I even posted information on his bedroom door for what to do should he have a seizure along with my contact information in bold font. And then my son has a really bad seizure. I managed to keep my head together while talking to EMS and comforting my son. One of the Paramedics noticed the information I posted. He said it was good that I had information posted, but it would be better if I had more of my son’s medical history and medications posted as well. Until that moment, I had not given any thought to posting that much information because they could always get the information from me. What if I wasn’t home? Would my son’s caregiver know what information to give? No. She would have to call me or the QP (Qualified Professional)and hope one of us would be able to answer the call. I don’t ever want to be in that position. So I took the paramedics advice to heart and came up with this list of information to post.

Current Prescription Medications (List psychotropic medications first)
Non-prescription drugs/Vitamins/Supplements
Medication Allergies
Primary Diagnosis
Primary Care Physicians
Hospital of Choice
Medical Record Number
Insurance Information
Date of Birth
Guardianship Information (for adult children)
Experience with First Responders (good or bad)
Ability to tolerate exam and IV catheterization
Triggers/Behaviors
Interests/Methods for Calming
Choking Hazard
Dietary Concerns/Food Allergies
General Information
Next of Kin
Emergency Contacts (at least 3)

Another thing you can do is check with your local MCO (Managed Care Organization) or NAMI (National Alliance On Mental Illness) to see if CIT (Crisis Intervention Team) is available in your area. If CIT is available, check to see if they are trained on how to help patients and individuals having autism or other I/DD. It may be beneficial to request a CIT trained first responder when making a “911” call.
More information about CIT https://citdurhamnc.org/about/

When making a “911” call It is important to share pertinent information so dispatch can send appropriate help to you. Let them know the following:
If the patient is Autistic or has other Intellectual disability
Verbal/Non-Verbal
Best Way to Communicate with Patient
Ability for Patient to Understand Instructions
Triggers/Behaviors
Methods for Calming
If the patient is taking psychotropic medications
If the patient has experience with emergencies/first responders

You can also request that the lights and siren be turned off when they reach your neighborhood if you think it may upset your child/loved one.
 
Create your own Medical information list or use Vial of Life http://www.vialoflife.com/how_to_use_the_vial_of_life/. You can place it on your fridge, in your car, carry it in your purse or put it in an emergency kit.  Order as many as you need. It’s free!

Also, it would be a huge help for you have your medical information available should you have an emergency and an emergency kit for your child/loved one. Emergency kits should contain the following:
Contact Information
Medical/General Information
Medications (at least 1 weeks worth if possible)
Changes of clothes
A couple favorite items
Instructions for food preparations if on special diet
A re-loadable visa gift card for purchases

 

Thursday, January 11, 2018

Library Installs Stationary Bikes to Help Kids Read

I think this is the coolest thing ever. How ingenious to install stationary bicycles in a school library. And though I think this is the best idea since sliced bread, I could not help to think about my fellow homeschoolers. How awesome would it be to have a similar set up in your homeschool. Can you picture it? Reading Bikes for Busy Tikes. I love it! Wait, I just thought of something; there's a toddler learning station that came out a few years ago. Fisher Price Think and Learn Smart Cycle

How clever someone to take a wonderful idea to the next level. Not only can a child learn while moving, they can also get plenty exercise. Perfect!

Here's video about the stationary bikes installed in a school library. The little boy interview was the sweetest part of the video. Library Installs Stationary Bikes to Help Kids Read

To my fellow homeschool parents out there, if you have a little one who's need for movement outweighs all else, consider incorporating movement into learning time. If you don't want to go the bike route you may want to try placing a mini trampoline (with safety rail) in classroom where they can bounce while learning. Try different things to see what works best for you.

For good bargains on used equipment visit Play It Again Sports. See if they have a location near you.


Monday, January 8, 2018

Never To Soon For Planning a Safe Summer


It’s never too soon to start planning for safe Summer activities. Information is now available on the AngleSense blog about research results on GPS systems and the positive impact these systems have made in families with children having disabilities. I've included the link below.
I don’t think it’s a bad idea to look into GPS systems for older/adult children or family member. Definitely, something to look into, especially while planning summer camps and vacations.
New Study Shows Why You Should Get Your Special Child a GPS Tracking Device This Summer


Best wearing options for AngelSense GPS tracking device

 
 
As we begin to settle into the new year, let us look into ways to not only increase safety for our children and loved ones but also increasing our quality of life. With a GPS system in place, you and your family will be able to explore new adventures while feeling more confident in your day to day goings.
Happy Planning!!

Wednesday, August 9, 2017

Help With Getting Your Child to Sleep at Night



I know what it is to have a child that does not sleep as he should at night, as many of you out there do. The difference for me is that I wasn't bothered that much by the fact that my child only slept in short spurts.

I do wonder...are there any other parents out there who are on the spectrum themselves that don't seem to mind if their children are up at night?

At first, my only complaint was getting to have some mommy time to myself. I look forward to having time to myself at some point of the day, usually at the end of the day. There have been times my son has been up late night and want to play or help me clean. Don't get me wrong, the cleaning part is great, but I'd rather he help me during the day and let me have my time late night. Other than that, I had not complaints, at least, not until he developed epilepsy. Those of you who battle epilepsy know the importance of sleep when trying to minimize seizures.

I'm working hard to help my son's seizures to decrease. It's been a struggle getting my son to sleep through the night. His neurologist  prescribed Gabapentin. I didn't like it at first because he's groggier during the day and it seemed to increase his seizures. Though the seizures were mild, the frequency became a major issues. I tried adjusting the medication several times. Nothing was getting better. It had gotten to the point where I had to homeschool him and schedule speaking engagements later in the day because he was too groggy and highly prone to seizing late mornings and early afternoons. I literally had to completely restructure our days. This had to change.

About 2 weeks ago I had an aha moment. My son needed more than medication changes to help him sleep through the night. I needed to change his night time routine. So we began building a bedtime routing that allowed him to still have some activity, but activity that allows his mind calm and be receptive to sleep. It's working well. When it's time to get ready for bed I put on a video that is interesting enough to draw his attention while being boring enough to lull him to sleep. It's taken a couple weeks for him to get used to the new routine. I think it's working very well. Even though he's been a bit resistant, sleep patterns have improved tremendously and seizures have decreased.

Whatever nighttime routing you come up with for your child, be sure to have a back up plan. I say this because I've noticed a few of my son's nighttime videos have gone AWOL. Not to worry...until March of the Penguin, Mr. Magorium's Wonder Emporium and all of the Wallace and Gromit movies return to their home on the shelf, I will gladly let him watch a few of my select favorites...Bob Ross Painting, Turtle: The Incredible Journey or Bears (the movie). Ha! Ha!

Here's a blog post I ran across today, written by Anna Laura Brown. She gives sound advise to parents struggling with getting their wee ones to sleep at night.

How to Solve the Sleep Problem Without Going Nuts - by Anna Laura Brown

Anna's an awesome blogger that I follow on twitter. If you're interested in following her you may do so @annalaurabrown.