Intellectual Disabilities (or PWID)

The ability to follow rules/obey laws

Consistency. PWID normally have a short term memory loss, so how can we, as caretakers, be assured that rules are being followed and they can function in this rule driven world. Consistency! It also needs to start very early. A child with a normal intellect can make allowances for inconsistency better than a pwid. We have to be a stone that never moves, something they can build a foundation on. If the answer to a question is no it can never be yes. I know I have fallen short of this many times and the one who suffers the consequence is my pwid.

If you have in your charge an adult with pwid who did not have the benefit of consistency, I am here to say it is not too late. Bear down, take courage and lose your soft spot, the only one you are hurting is your pwid if you can’t do it, you have to have, to coin a phrase, “tough love”.

How do we change the habits of people with intellectual disabilities? Reasoning! I have found that using an example works well for us. “Do you know anyone that doesn’t follow rules?  Like someone who steals a car? What consequences do you think he has? Does he go to jail? Or what other consequence do you think will happen? What would you do differently? Would you walk by if you knew you would go to jail?” That might not always work. They need to feel the consequences of their choices like everyone else. What are the consequences and are they compelling enough to change their actions? Do you remind them often? Consistency, that’s it. We need to be more consistent in the repercussions of their choices.

Most pwid’s’ do not have the benefit of people treating them like they have opinions. We need to get over the fact that they are different and realizing that the difference they have is not evil or scary. We also need to talk to adults as adults whether they have disabilities or not. Do we need to make allowances for them – absolutely, but not to demean, belittle or patronize them. They will certainly not learn by those examples.

I have found that with time, people with intellectual disabilities can learn, reason and produce. They can have a productive interesting life with help from caretakers that are astute and knowledgeable. We just need to realize that when we have a pwid our learning curve is forever active.

Intellectual Disabilities

Intellectual Disabilities (or PWID)

Today we will be discussing social skills—interpersonal skills, and social responsibility. There are lots more in this category but I feel we need to handle this one difficulty, alone without any distractions.

Being socially responsible, I think is very difficult. There is a naïveté sense about the pwid that is wonderful on one hand and very difficult on the other. They tend to take EVERYTHING personally which can be very frustrating to the pwid. Imagine yourself having an innocuous conversation, only to have someone say something terribly inappropriate. How do you recognize the inappropriateness of the statement or action without causing a scene and do you really care if it does cause a scene.  Most pwid’s are reactionary. They have uncontrollable responses to their perceptions and not the world’s reality. How do we teach them that unreasonable responses to innocuous situations are not in his or her best interest? I am NOT saying that what was said or done was in anyway unacceptable, we are talking about their perception. And their perception, is their reality.

I believe it goes back to the concrete issue. Even people with intellectual disabilities speak in abstractions, it is the decipher mechanism deeply rooted in us that make our reactions positive or negative. Instead of raising our hands in defeat we need to raise our thinking to accept that our pwid does not think on our level. Whether their standards are me oriented, “it’s all about me” or “it’s all about someone else”, we need to start correcting that theory. It is about balance. Sometimes there are irresponsible thoughts bantered about without consideration of ANYONE’S feeling, whether they are the perpetrator or the one who was perpetrated. There needs to have a concrete philosophy established, an example there was teasing going on and someone got hurt. We could make an argument for or against the intent of the teasing. Was it malicious or playful, what was the intent of the statement or action? We need to stop and quickly analyze the situation and deal with that as soon as possible. One of the problems we have is that our pwid usually has short term memory loss and we need to logically handle perceptions accurately and quickly.

Take your time make concrete examples and ask questions, “Do you understand the example I have just given you?” “How would you feel is someone said that to you?” The more questions you can ask calmly and patiently, I know that is not easy, the better.

Intellectual Disabilities (or PWID)

We are going to talk about adaptive behaviors; which comprises three skill types:

• Conceptual skills—language and literacy; money, time, and number concepts; and self-direction.
• Social skills—interpersonal skills, social responsibility, self-esteem, gullibility, naïveté, social problem solving, and the ability to follow rules/obey laws and to avoid being victimized.
• Practical skills—activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone.

In this blog we will not have time to talk about all three and certainly this is not the forum to answer and address all the problems. We would need days, months, years to do that, but we will address one section at a time.

Conceptual skills, we have talked a bit on this in the area of language, as a reminder we talked about making sure we speaking in concretisms and not abstractions. It is very difficult for the pwid to gather their thoughts other than in a concrete way. They need specific, black and white communication.  For example “How are you?” can be considered an abstraction. It is not really specific, but because it has been asked for so long it has been the routine and everyone knows that no one really wants to know, the answer has also become a standard “fine”. To put it more succinctly, the questions you asked need to be more topic focused. Have you washed the dishes, have you seen any good movies lately? Think about getting a yes or no answer to your questions.  

Money is a difficult one, we short cut everything. If they are capable to go out to a restaurant by themselves or with friends and have to figure out a tip the easy way that we have used is the fingers chart. Let say the bill in 25.00. They count on their hand using one finger at a time in 5.00 increments. So a bill for 25.00 would use 5 fingers and that would be a 5.00 tip. Pretty simple but that gives them confidence to figure it out by themselves. We also round everything up from .50 or down, if it is less than .50. If some is 3.23 we put down 3.00, the next item is 4.51 we round up. It pretty much balances itself out. Simple solutions that solve many problems, and they work for us.

Time can be a big turmoil, except when there is something important for her. That is where programs like Pathways we have here is so important. The events she chooses have a beginning and end time, and they expect people to be on time and have little tolerance for people who are late. They ask why and expect a reasonable answer, if they don’t show for the event there are consequences to be paid for that. Time management is not easy but do-able, with a little help from your friends.

I am running out of space so I will end it here. We will continue with this subject, to be sure. Thank you for reading this, I appreciate your loyalty.

Intellectual Disabilities (or PWID)

STRESS! How do we handle it?

Research has shown that people with a disability have more stress, but the levels of stress have more variables than just the person with the disability.

Coping: In relationships with stress the coping skills are brought down to 2 main areas.

Problem focused and emotion focused

1. Problem focus is aimed at reducing the effect of the event or completely changing the event by both cognitive and behavioral strategies.

2. Emotion focus is aimed at the feelings and how to maintain emotional balance.

Even though both skill sets are important, as families we hone in at the problem focus to cope and lower the stress levels. We have the limitations of focusing on the dysfunction rather than the adaptation of how we function with the high demands and the use of resources. Identifying the family stress cannot give total picture of the effect of the disability on the family, but researchers have found that the caretakers have found there are benefits and rewards with the pwid. The sense of rewards does not mean that there are no stressors and there is evidence of the rewards. They are:

· Joy and Happiness

· A sense of purpose

· An increase of personal and social networks

· An increase of spirituality

· A closeness of the family unit

· Increased tolerance and understanding

· Personal growth

· And a positive impact on the community and others

Keep in mind that being a caretaker, whether a family member or not, is very difficult. Siblings can join advocacy groups or develop new social support networks. Families of people with intellectual disabilities usually make accommodations in order to maintain the family routine. This has important implications and sacrifices that the whole family needs to make.

As the child grows into adulthood there seem to be two complementary themes

1. A stable routine develops with consistency and the older siblings leave home and become independent

2. The caretaker gets older and the care may evaporate by failing health and the siblings often share with the support given to the sibling with the disabilities.

In conclusion, caretakers and family members of the person with Intellectual disabilities must do their research and realize that stressors are the way of life with your pwid. The researchers have gone all around this and what it looks like to me is; be kind to yourself, realize who you are dealing with and be generous to the people involved.

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.