Intellectual Disabilities (or PWID)

 I am going to step away from the series I am doing to explore some programs you might find helpful, or at the least interesting.

There is no cure for intellectual disabilities. Services and supports play a vital role that will lead to independence, as mentioned in my previous article. Finding the right help is crucial to the person with disabilities’ progress to an independent life.  These services make a big difference in their daily lives, between personal success and complacency.  Some of the services can involve case management, where the staffer helps the client enroll in many services, from Medicaid to transportation. They can get the pwid in touch with an organization that can help teach the client how to achieve their own way on public transportation but not limited to only that service, but can help the pwid take steps towards more self-reliance. 

There is also family care to help the full time caretaker with resources, education or just support, emotional and sometimes financial. In certain cases, where the pwid has difficulty with anger: the case worker can suggest and possibly pay for therapy sessions. You would have to check your local area and the resources they offer.  As caretakers, our biggest struggle could and can be solved with a little research. I know in my area the services these caseworkers have available are not necessarily advertised, so it might beneficial for you to roll up your sleeves and find them.  They are there to help you and it has been my experience that you need to be an advocate of your situation, these caseworkers are usually overbooked with clients with caseloads from 100 case plus. So it is best to go there knowledgeable and have questions ready. They have resources ready to share, but if you are unprepared and don’t have a clue to what you need don’t expect the caseworker to know.

I have included some of the questions you might want to consider:

1.       Does your pwid need a job?

a.       Are there programs in place to help them find one and is there job coaching available?

2.       Do they need some vocational training or programs?

3.       Are there day programs that would be beneficial?

4.       Does anyone offer residential options, whether it may be a living situation or instruction to help with self-reliance?

5.       Are there programs for early intervention?

6.       Is there an educational system for special needs?

a.       Can you get an advocate to help with IEP (Individual Educational Program)?

                                                               i.      Are there programs available enabling your student better access the services that will better support them?

If you search and ask questions you will have a cooperative relationship with your case worker. Just remember they won’t know your needs unless you tell them.

As a postnote I will be publishing 2 articles a week, every Monday and Thursday. Thank you.

Intellectual Disabilities (or PWID)

Personal safety

As we talk about the adaptive skills the person with intellectual disabilities (PWID) needs, we cannot neglect the issues of personal safety. I find there is a trusting in the pwid that is beyond common sense. Their belief is not always the most discerning. They must be taught or reasoned with, but hopefully, not frightened into the knowledge of safety.

How do we as caretakers decipher the challenges of the pwid concerning trusting others? Do we need to be on guard every minute? No. We need to do our best and trust in our teachings. For example, when our children are small, we tell our children about strangers and the evils of relaxing their defenses. Well that is good, but how do we do more to help?  

If you have the privilege of having outside support and if you are not using them, you should be taking advantage of what they offer. We have in our area wonderful support systems set in placed that help with a multitude of help; one in particular offers assistance with job and social skills. They have the staff, which have dealt people with a variety of disabilities, encourage the social skills that will enable them to reason and solve everyday difficulties. For example, someone saying something inappropriate or if they are handling a very intense situation, the staff in this organization does not interlope into the situation, they help the people involved find and think about the solutions.

Don’t try to carry all these concerns on your shoulders, share the burdens. The people in these organizations are very professional. They have more experience with many different kinds of disabilities and the knowledge on how to successfully help people with disabilities arrive to solutions, while building confidence in them.

This is a very concerning issue and the more people involved in helping; the better they will see solutions that will be a foundation of them having an independent life. Contact your local agencies dealing with the disability. I found several for my local area by googling on the internet, “help with people with a disability in the (your zip code)”. A list of agencies popped up and I had my choice of help. Be discerning not all agencies help with your needs. Once you get an in, you can ask the agency you’ve contacted for more information concerning your need.

Don’t forget many states have funded respite care for caretakers so they can take a break and come back stronger for their special person. It is important for caretakers to get outside of the disability. These organizations might not pay for you to get away, but will offer someone to take over as caretaker while you are gone. Check out your local organizations for a multitude of services available and take advantage of them that is why they are there. The next article will be about home living.

Intellectual Disabilities (or PWID)

Please look for new entries every Thursday at the close of day (around 6 pm cst)

Personal Needs

In the last blog we discussed communication and how we need to set the bar high with using concrete thoughts and reasons. Taking our thoughts captive and speaking in concretisms to help our PWID understand words and phrases will not only help them communicate in a productive way, but ease frustration.

Now, let’s focus on taking care of personal needs (dressing, bathing, going to the bathroom). Has anyone struggled with that concept? I certainly have, how do we tackle that situation? We handle it with, again, in a solid concrete way, using direct and positive words. No quilt, accusations, or false realities i.e. if you don’t brush your teeth all your teeth will fall out. That probably won’t happen in the immediate future and they will start doubting your words. People with intellectual disabilities need to rely on their caretakers and over-exaggerating will not enforce their confidence in you or themselves.

 What is helpful is knowing what kind of learner your person is, tactile, visual, auditory, and use as many senses as you can. Some people have difficulty, especially those with speech and language delays, with listening. How can we relay the importance of them taking care of their physical needs without prompting? For our situation, it was a simple case of confidence. How did she proceed without me stating the obvious? By having her, slowly start to take responsibility for her own needs. How you ask? By not enabling, which is different than encouraging? She had a toothache, and with very little help from me, she had to call for an appointment, she had to take responsibility for all the paper work, and she found it easier to take care of her teeth. That worked for us, you will need to find your own success maker.

Responsibility is a great instructor. Sometimes it is easier for us [the caretakers] to do it, but who does that really help in the long run. You might need to start out small, baby steps, by letting them make decisions and having success with those decisions. The success will grow; they will enjoy that success and continue to make larger decisions, taking responsibility for themselves. It is like a snowball effect.  My daughter has a hard time giving herself credit for a job well done and needs constant “atta boys” from me. Taking responsibility not only helps decisions but helps with confidence where they need less and less “atta boys” from their caretakers.

Being a caretaker of a person with ID can be challenging if you make it, but also rewarding when they make the best choices for themselves and take responsibility for those choices. It is a reason to celebrate.

Please leave a comment on how you resolved an issue of personal needs, decision making, or taking responsibility. If we share it may help people who struggle with these issues. In the next issue we will be discussing home living.

Intellectual Disabilities (or PWID)

Please look for new entries every Thursday at the close of day (around 6 pm cst)

Having a child with intellectual disabilities, I have searched high and low for answers and of course, a cure. But there is no cure and truthfully that doesn’t hold the stigma it used to for me. I love my child, she is funny, bright, and a joy to be around, but she struggles with esteem and self worth.

My daughter's adaptive behavior is challenging but improving, slowly. I will share some thoughts on how it has improved and why.  Check with your person with ID to see where their symptoms may overlap with my daughter's and let's look at how to deal with the struggles:

1. Communication

How well does he/she communicate with others. Are they combative, take things too personally? That’s because their communication skills are limited to the most concrete of meanings. Abstract thinking is alien to them. For example, they can’t understand someone saying in jest that they are silly. They take it as something other than humor.

How can we, as caretakers, help our child realize the truth or reality of the statements that are said? My daughter has a job coach that uses abstractions all the time. I gently remind the coach that she needs to speak in concretisms not abstractions.  That in its self will help immeasurably. Think of it this way, if you are listening to someone, their mouth is moving, but you don’t know what they are saying. Very frustrating!  To help, take time to check your words and make them black and white, yes or no, there should be no grays. “Have you washed the tables with the cleaner I gave you earlier, with the sponge I gave you? Did you go back and forth or around? ” not “did you do the tables?"  Give directions one step at a time. In time the chore or direction will be ingrained and then the abstraction will be tolerated. Important fact** when they get it congratulate them so they know they understood the direction." Wow you did a great job." Watch them sparkle!

Having a child with ID is not easy or smooth running, but it is like opening a gift when they get it, and that makes it all worth it. In the next blog, we will be dealing with personal needs and how to help them with that.