Support the Disabled

Well my wife had to goto the Philippines for a family reunion for 30 days. She gets back tomorrow. It has been hell without her help. Kristy is doing fine but it has been hard on myself and oldest daughter. You don’t realize how much you depend on the other parent till you have to live it. Alot of sleepless nights, difficult feeding, and general things that come up make it something you would have to get used to. I will post more once she gets home and I have some time.

The Mandt System is used in a variety of settings to help caregivers, parents, and countless others. It provides the tools they need to help understand disabled people and to give them the dignity and respect the disabled deserve when in the workplace, school, etc. Mandt helps people to deal with behaviors that may be violent so that they can stay calm in those situations it also is in place to help build healthy relationships. Here is some info I had gathered from my session at work.

Building healthy Relationships

1. It’s a process it never ends
2. Respect shouldn’t have to be earned
3. Behaviour is communication
4. Meet the need build trust
5. Putting people first even the ones you don’t like
6. Embrace the person not the disability
7. Everyone has hopes and dreams
8. Make sure they understand what you are asking
9. Involve your child/participant in your conversation about them
10. Consistansy builds trust

This next part is about how much interaction you should have:

Non Physical - Attitude-Always

1. Non-verbal- Always listening and personal space
2. Verbal Frequent direction and feedback

Physical Interaction

1. Assisting- Sometimes
2. Physical touch-Sometimes
3. Restraining-Seldom

A big part of Mandt is knowing yourself and your co-workers/spouse such as

1. Do you know when you are stressed
2. Help your co-workers/spouse if you see they are stressed

If you are stressed when you are in a high-stress situation with your child/participant it will not help them in any way.

Mandt offers training for businesses, here is their site: Mandt System

If anyone has any suggestions for equipment or items to help support the disabled please let me know. I am also asking for volunteers to help with the blog. Just drop me an email.

There are way too many things to list but I will point out some that I hope will make your initial homecoming easier on you the parents.

1. Definitely need an intercom system. One made for babies is fine. This will give you some piece of mind so you can move around your house and not worry. We did not think of this till week 3 home and it was a nice relief.
2. Someplace for the child to sleep. We had a regular crib at first but found that was not the best solution for numerous reasons. We ended up getting one of those cottage beds from little tykes and instead of using a box spring and mattress we used just a mattress. This has multiple benefits for us. It is easy for us to lay down with her if she is cranky. Also it has been with us since she was less than 1yr old. This solution will not work for all types of disabilities as some disabled kids will be able to move around on their own.
3. A good feeding Highchair. We chose one that had straps for added security. To this day we still use the same highchair. But again not all disabilities have the growth stunted as WHS has.
4. This one will not be for all families but if you have pets or stairs I highly recommend some sort of child gate to keep them away initially. To this day we still use the gates since Kristy loves to roll around the house. We make sure she stays in safe areas that we have everything situated in a way she can’t get hurt. She loves to explore and will pull on just about anything to see what is above her.
5. Ok here I will list what should be obvious. These things are a must for a newborn regardless if they are disabled but are sometimes overlooked with the stress. Children’s fever medication (i.e. Tylenol, Motrin, etc), a bulb to clean the nose, 1tsp syringe, diapers, baby wipes, Vaseline, emergency phone numbers, and of course some baby food.

Well, it has been 3 days since Kristy started a fever. She is still having higher than normal temps. After raising her for the last 12 years we are able to tell that it is normal for her. When a disabled child gets sick it is not like if you or I get sick. It usually is a longer recovery period for them. When you do have to go to the Doctors office for antibiotics and he says “finish the medication”, do it. I know with our other two kids that sometimes doesn’t happen but with Kristy we have to be sure to finish it or she will get sick again and quickly.

Well I have only been working in the field with disabled adults for just over a year, I came from retail so it was difficult in the beginning. The one thing I learned right after I started was that people with disabilities are alot smarter then most people think they are they also know how to do more then what they are given credit for. Every disabled person can in some way tell you what they need if it is with pecks ( which are cards with pictures and words on them) ie: Thirsty, Hungry and so on I have found this to be very helpful with someone who can’t speak I have a girl that I work with who can’t speak but she would always point at her mouth now we can tell using the pecks with her whether she is hungry or thirsty. Another way to tell if something is wrong is facial expressions most of us take those for granted but it could mean a big difference on how someone is feeling like if they are scared or in pain stuff like that. In the beginning it can be overwhelming but believe me with time it will get easier.

Sarah

Today my wife had to pick up my daughter from school since she was running a fever. It is not good when our little one starts running a fever. If it gets too high, it is almost as if she just shuts down for 20-30 seconds and does not breathe. We usually give a couple of breaths for her and she comes out of it. This happens 2-3 times a year now but used to happen a lot more. It is just one of those things you get used to. I remember the first time it happened when she was 2 months old. My wife called 911 while I was trying to get her to breathe. At first they thought it was a seizure and started all kinds of test, sticking more and more needles in her. Started her on Phenobarbital (an anti seizure medicine) and she started degrading in her eating and was always lethargic so we stopped giving it to her.
Seizures are part of the WHS disability. Not everyone who has WHS has seizures but there is an increased risk. We took her off the medicine since the doctors finally agreed it was not a seizure and that she just deals with the high fever in her own way.

Here is a list ways to get information.
1. Other parents of disabled children
For new parents of disabled children you will feel overwhelmed in the beginning. Most parents will have a lot of questions that need to be answered and some are even afraid to ask. Believe it or not the best resource is other parents in your same situation. I have received more correct information by just walking up to other families while in stores then anywhere else. Don’t be afraid to ask either as most people will be more than happy to help. If you see some device (i.e. wheelchair, stroller, etc) that someone else has and you think it would benefit your situation, just ask.

2. Internet search
There is a lot of information now on the internet. When my daughter was born there was nothing on her particular syndrome. Just be careful as there are alot of scammers out there.

3. Doctor who specializes in disabilities
This is always a good source of information however, the doctor you are talking to probably does not have a disabled child. He just does not understand what your needs are.

4. Shriner’s Hospitals
Probably the best hospital for disabled children. My daughter was going there when we lived in Portland. She was taken care of very nicely there. Unfortunately there is not a Shriner’s close to us now.

5. Your health insurance EAP program
Most companies have this as part of their health insurance but often do not advertise it.

When Kristy was born the DR’s told us that there were less than 100 cases documented world wide. A few years later we found out this was not the case. WHS or Wolf-Hirschhorn Syndrome can range from severly disabled to moderate. Some can walk and talk while others can’t do anything for themselves. Kristy can not do anything for herself except roll around. And wow can she move fast. Specialy if she is hungry, she will roll to the kitchen. The following link has a very good write up on WHS.

Wolf-Hirschhorn Syndrome

Let me introduce you to Kristy. This picture is from August 2006 on her 12th b-day. She was born in honolulu, Hawaii 11 months after I got back from the first Gulf war. She was given 50% life expectancy to the age 5 and 10% every year there after. As you can see she is alive and generaly happy. She is mentaly and physicaly disabled. Developementaly she is roughly 4-5 months old.