Monday, March 12, 2018
Wednesday, February 28, 2018
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.
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.
Sunday, February 4, 2018
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.
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.
Making a motion toward the provision of cohesive services for disabled persons.
Tuesday, January 30, 2018
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.
Primary Care Physicians
Hospital of Choice
Medical Record Number
Date of Birth
Guardianship Information (for adult children)
Experience with First Responders (good or bad)
Ability to tolerate exam and IV catheterization
Interests/Methods for Calming
Dietary Concerns/Food Allergies
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.
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:
Best Way to Communicate with Patient
Ability for Patient to Understand Instructions
Methods for Calming
If the patient is taking psychotropic medications
If the patient has experience with emergencies/first responders
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:
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
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
Wednesday, August 9, 2017
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.