Reading some interesting articles and thought this one spoke volumes.

Developing Social Skills and Relationships

By Betty Osman, Ph.D.

Learning to successfully interact with others is one of the most important aspects of a child's development, with far-reaching implications. Although most children acquire social skills by example, and possibly osmosis, research clearly suggests children with learning disabilities (LD) may have difficulty making and keeping friends. Adolescents with LD have also been shown to interact less with their peers and to spend more leisure time alone, addicted to TV, computer games, and the Internet. Certainly not all young people with learning disabilities experience social problems. Typically, the good athlete, class comedian, resident artist, or owner of the most magic cards, is likely to be accepted regardless of his learning issues.Then, too, some children, with or without LD, seem born to make life easy for parents -- and for themselves as well. They appear to develop social awareness early in life and, as they grow, display innately good "people skills"-- a sense of humor, a positive attitude toward life, and empathy for others, qualities guaranteed to win friends. But for many children and adolescents with LD, the lack of peer acceptance can become the most painful of their problems. Computers and calculators can help children with writing and arithmetic, but there is no similar technology to help them handle a lonely recess at school, a family outing, or a date. These require social competence. "Social competence" in this context refers to those skills necessary for effective interpersonal functioning. They include both verbal and nonverbal behaviors that are socially valued and are likely to elicit a positive response from others. Young people with social disabilities frequently are less able than others their age to figure out how to behave in social situations and less aware of how others respond to them. Therefore, they act without knowledge or regard for social consequences. Most, though, tend to be unaware of their role, perceiving themselves as the victims of others' mistreatment. Therefore, they take little responsibility for their actions, blaming others or simply "bad luck" for events in their lives. What they do feel, though, is an overdose of criticism from peers and adults alike. To help young people with social problems, it is important to understand on what level they are having trouble and how their social disabilities relate to their learning disabilities. The immaturity of many children with LD transcends academic areas, affecting their social adjustment as well. Communication skills, both verbal and nonverbal, also have social implications. Children who don't "read" body language and facial expressions well are likely to miss important signals in life that are apparent to others. To help children and adolescents develop social skills and promote social acceptance, parents might consider these techniques: ·         Listen to children with the "third ear," i.e., active listening, not only to the words they say, but the feelings they are expressing. ·         Initiate and practice pro-social skills at home, including: o    HHow to initiate, maintain, and end a conversation o    Tthe art of negotiation -- how to get what you want appropriately o    HHow to be appropriately assertive without being overly aggressive o    HHow to give and receive compliments o    HHow to respond to teasing by peers o    PPractice how to accept constructive criticism Although not all children and adolescents with learning disabilities have social difficulties, those who do require special understanding, not only in terms of their current functioning, but for the people they are capable of becoming. Although each young person is unique, all have the same needs — acceptance, approval, and a sense of belonging.

Intellectual Disabilities (or PWID)

What do you do when family members don’t care or understand the difficulties of having and being a person with intellectual disabilities? If someone looks normal they must be, right? It has been my experience relatives have little or no patience with pwids. They can become cruel and indifferent. I was always told that families stick together not so in mine. They truly do not comprehend the difficulties a sole provider has with being able to adjust to all the prejudices of the outside world including social, work environments, and family, it is just sad! My daughter has step family who will hardly acknowledge her, certainly won’t try to understand her and won’t give her the benefit of doubt. They expect her to process difficult and abstract reasoning without problems. They have formulated opinions based on hearsay. When was that ever ok?

Sound upset- I am? They live in their own little world sheltered by their own ignorance and force their opinions and thoughts on others. No one can do anything wrong it seems to be always the person with the disability. The person with a disability obviously has no moral fiber or does not understand right from wrong. Hog wash, the people I have known with intellectual disabilities, if anything have a higher sense of right and wrong, are more sensitive of others feelings, and believe in a almost naïve and innocent way no one would intentionally hurt them.

All I can say to those people is go ahead delude yourselves and miss the best part of experiencing life with a very different point of view, full of forgiveness, love, and joy. You don’t know what you are missing.

Intellectual Disabilities (or PWID)

Making decisions

Mom, what do I do now? Mom, is it all right if I …?  Mom, do you know where my…. Is? Sound familiar? My pwid is always asking for my opinions, thoughts, suggestions, or directions. Where is the confidence to make your own decisions?  My problems are with a child with intellect disabilities. It was very hard to trust her judgement, so I didn’t. The result was a person, who finds it difficult to make her own decisions, so now how do I fix that?

I sat down with her the other day and discussed with her options and how  I think she is ready to make her own decisions with no interference from me. Yipes!  But I think she is truly ready. She has proven to me she is more than capable, now to convince her!  One thing I have noticed is everyone learns at a different speed. My pwid had to realize the consequences of her decisions before she was able to take the full load of her choices. I do get concerned that it might be too late and that she is very comfortable in allowing me to make her decisions for her, but that was a chance I was willing to take. Forcing her to make her own decisions before she was ready could have been as detrimental as not letting her make them at all. We are starting out small. If she still feels uncomfortable making those choices we will discuss the consequences of those choices and what is she willing to accept. 

The more she chooses, the more confidence she will have making her own choices. The more successful she becomes , the more independent she will feel to go out and be the person she believes she can be.

Intellectual Disabilities (or PWID)

Friendships

Does your pwid have lots of friends does he/she go out and socialize or are they like mine, and find it very difficult?  Formative years- the years when you learn how to be a friend, eludes some people like my daughter. She was extremely shy, and not able to vocalize emotions or feelings other than inadequacies. She had what she thought was her best friend, who proceeded to tell everyone that came into her life about my pwid’s disabilities, which turned people against her. The same friend abused her physically, emotionally and took money from her. My daughter thought she was a very good friend and could not see the forest from the trees. No matter what I did or said she would not forsake her as a friend, simply, because she was her only friend.

It broke my heart, but as I said earlier we do not have the right to keep them from their hurts. Boy did I try.  In all my attempts to protect my child I failed. The hurts were like little tornados that set off a mixture of non acceptance, confusion, and self doubt, no wonder she clung to a “friend” that showed her any attention at all, even negative.  

Even for people without disabilities it is difficult to find a true friend. To find someone accepting of your Idiosyncrasies and to celebrate them with you is very difficult indeed. Boy does someone with disabilities have idiosyncrasies, so therefore one would assume that people with special needs have trouble finding someone. When she joined the group Pathways to independence, that all changed. Very slowly but it did. From her inverted self to reaching out, not being fearful of judgment, she faced those fears and moved away from people who used and hurt her.  We really owed them a lot. Things are changing with them and will modify the way they do things and I am hoping they won’t lose their ability to help people like Meaghan.  Meaghan has found friends that accept her for who she is, and accept, or not, her for who she is and not her disability. She still does not have many friends but neither do I. 

 

Good friends are a necessity of life, someone to share, laugh, cry, with, to share your inner most feelings, without repercussions.

 

Many people with disabilities do not have that precious gift or have an abusive one like my daughter had. I am very grateful for organizations that enable the ability of finding and keeping friendships. We would have been lost without them.

Intellectual Disabilities (or PWID)

Now that my daughter is 30 what am I going to do?

Sound familiar? Too many of us are getting older and struggle with what will happen when we pass on, go to the big house, kick the bucket or just die. The responsibility of your special child is daunting. I really don’t have anyone to take care of her when I die. My son has his own family and I think the imposition may be too great for them and I am not sure they truly understand her, which could be terribly detrimental to her and them. It is my job to help her achieve a certain level of independence, to the point where she could take care of herself.  She is doing well so far, we have achieved a lot.

She knows how to take care of the home, do laundry, and cook to the point she won’t starve.  We do have services available that will help her pay bills and do grocery shopping, etc.  She is in the process of learning how to drive and hopefully she will build up enough courage to do it. I try to rack my brain for all the things necessary to help her succeed. As it comes up I need to jot it down to help me.

What are the things lacking? Oh my goodness. Sometimes I find it is easier to do things than let her do it and she counts on that. Never do today what you can put off ‘til tomorrow, seems to be the motto of the day. We need to keep them motivated, easier said than done. We try to help our special children realize the best for themselves and try and try. Sometimes we are successful and sometimes not so much, but we can’t give up.

What about you? I would love to know what you are doing to get your charge ready for the life they will have without you!

Intellectual Disabilities (or PWID)                                            

Bullies

The one thing I truly love about my pwid is that she is so accepting and forgiving. She has had some horrific things happen to her and yet she keeps plugging away. She forgives things that people have done to her quicker than I think I would. Lovely, just lovely!  Does she ever become unreasonable and uncomely – yes!  But on the whole I am very proud of her.

In her formative years people just where downright mean.  They would make fun because they could, she was so naïve and innocent that they would tell her something false and laugh at her. Or they would hit her or assault her because they thought she wouldn’t notice or care. How ridiculous! In child hood there is no such thing as empathy.

I realize most people have to deal with difficult people, but people with disabilities expect more from people, shouldn’t we all. How do we stand next to our loved ones, support them when people are so heartless and ego centric. We do not have the privilege of taking away the hurts of our special ones. Yep the privilege! That is when we grow the most is when we are stretched to the furthermost degree. They have to find the courage to stand up for their selves, and to advocate for them self without hesitation. Interfering causes harm! It is very hard not to, believe me, I know from what I speak. I become a tiger lunging at anyone who looks wrong at her.  I did her no favors doing that, but we are making up for that now slowly but surely.

They learn how to deal with difficult people and what to take personally and what not to take personally. It is hard yes! They lose some of the innocence, some of the trusting, people rebel because they don’t understand, too bad.  Just think of your preteen losing her innocent with bullies, hard right? A child that has disabilities has to relive it over and over because of their short term memory. Just stand next to them and don’t coddle let them feel the pain, and while you’re heart is breaking, know that everything will be okay.

Intellectual Disabilities (or PWID)

Teaching organizational skills

Is your pwid organized? Not mine! I know she is very capable of it and sometimes she forges ahead and shows me she is, but seems to revert back. I believe it might have a lot to do with me. I am tired and don’t always practice good organizational skills. But to be most helpful to our pwid’s we must bear the cross and fix our own deficiencies. Being a parent or caretaker to a pwid is a lifelong commitment. We fortunately or unfortunately, however you look at it, have our child longer than the usual 18 years, usually long into adulthood, so we must be diligent always, no rest for the weary.

More to the point, how do we keep the interest in our charges to be organized? “Mom where are my ________ (fill in the blank), Mom have you seen my ________, I left them right here and somebody took them (looking at me)”. Sound familiar? Well, what and how do we change the situation? Start by getting yourself as organized as you want them to be. Yipes right? Really it is easier that way. (Speaking to myself here!) Hang hooks for keys. I created signs for what clothes to wear for work. She has that now, doesn’t need them anymore. Find spots for things, everything has a place and a place for everything. (Thanks Dad!) Start slowly. Find a good book on the subject, if you need and use it, don’t lose it. Remind and support your child in this. “You know you are standing right next to the wastebasket, please don’t throw trash on the table.”

“If you hang your keys up you won’t lose them”. Hang up your work clothes, the floor is not a closet.”

Boy I am feeling you here. Nothing seems to sink in right? It will, be patient and consistent. Just like when they were kids!

Intellectual Disabilities (or PWID)

Being supportive at work

My pwid has challenges but she is very high functioning and she had a job at the age of 17. She worked at a very large facility in their cafeteria. There were a lot of signs that is was going wrong but I did not see it until she was let go. She had a job coach who was very nice but was enabling. I had to intervene much more than I wanted or needed. We certainly need to be supportive of our children but where do we draw the line?

My daughter’s esteem was plummeting when I decided to step in. Some would say finally and some would say not your responsibility. They had management turnover and some of the new people had no empathy for my pwid. She has an extremely high work ethic, and was appreciated for that but chastised for others things. Finally she had 5 ulcers and was a nervous wreck. Thankfully she is out of that situation, but I am not sure she will ever be able to work full time again.

Where do we draw the line, darned if I know? How much should and do we expect from the job coach? Is it reasonable? Are there rules for what to expect for the job coach? Should people with short term memory be expected to remember these rules? What are the answers to these questions? Let’s talk about it. What should you expect from the job coach? Take the time and write down important questions such as what are there implied rules. Are they written down to help your pwid remember them? What should they expect when they are working? If there is a problem at work, what is the job coach responsibility for doing at that  juncture? here are a lot of organizations that have job coaches? Shop around for personalities that are better suited for your child. You are always allowed to switch. It is a job for them, they get paid. You are not tied down to the first one. Shop around this is your child you are talking about. When your pwid gets to the point where they are self-advocating, you can release the reigns. Getting the right job coach will change the whole situation.

Even when you do find the right job coach, you have to constantly work with your pwid to raise her self-esteem and that is not easy. Their confidence is low and they want to hide rather than stir anything up. You need to instruct them on taking care of their selves.  You know you won’t be around forever, so they need to advocate for themselves. They will get there if we let them.

Intellectual Disabilities (or PWID)


Social problem solving

One of the things that will hold back a PWID is social problem solving. When something happens socially how fast do they recover? Are they proactive or reactive? If yours is anything like mine, she was (operative word here-was) very reactive. You and I both know actions beget actions. So if something innocuous happens and your pwid reacts it will balloon into something catastrophic. Which, as you know, is not optimum.

How do we, as caretakers, solve this situation? Gullibility isn’t pretty and most people take advantage of that. They make jokes because they can get away with it. How do we make our pwid’s wiser to the jokes of others? By constant reassuring and reasoning, they will eventually understand, after many hurts, but we must observe the letter of acceptability and propriety. Unfortunately, even more than the others who pursue them? One way is to teach, no matter how difficult, not to react, most people want to see the reaction of the person teased. Another, would be for them to reason with themselves. Silently talk to themselves on what the probability of what they are saying really happened.


Misunderstandings happen daily. At work when and a supervisor speaks to your pwid, more than likely there will be a reaction. Try to talk to the place of employment to see whether or not the job coach could be available during these times and rely on the job coach to do their job. They will be able to decipher any communication errors happening during that process. You cannot be there during these times and you need to put your faith in the job coach. You can shop around for job coaches. You do not have to take the first one. There are many agencies out there supportive in the employment role. Check around!


Try to see if there are any social clubs or agencies that focus on social skills. They are very helpful. I know my pwid was painfully shy. She now can have a conversation with people she doesn’t know. She has a bit to go but all in all she is doing very well, because of the social skill she belonged to. Try some of these suggestions and maybe your pwid will start be more proactive than reactive.

Intellectual Disabilities (or PWID

As I was searching for more helpful information I found a useful PowerPoint presentation from the AAIDD American Association on Intellectual and Developmental Disabilities. It relays just how important social skills are and how we, as caretakers, can help them. It is a free webinar for registered users: Free webinar on individualized supports planning for students with intellectual disability. It is a great resource for helping someone who has Autism or Down syndrome with ID. You will find the connection on the list of national links on the left panel of this page.

In a nutshell it talks about 2 individuals who have disabilities, what their particular difficulties are and how we can help them. They speak of 3 levels of behavior: red, yellow, green, pretty self-explanatory. Red meaning very bad, yellow meaning uh oh and green meaning go for it. They give you scenarios for each social behavior, what the reactions could be and the consequence of each behavior. This is eye-opening.  My feeling is a lot of people don’t necessarily understand the importance of social behaviors and how it could make or break a work environment. Social interaction is probably the most important realm of the work environment.

All that to say this, ISP’s Individual Support Plans! What does your child (adult) need? Do they need to know the boundaries at work? What is the most effective plan? Do they need instructions and constant reviews from the job coach? What other support do they need, self-directed monitoring systems using help tools like cards? Or do they need their peers and environment setting up mentors at work. They, in this presentation, have examples of what are inappropriate behaviors, reactions, and consequences. They also give examples of what would be appropriate things to say.

What are the positive supports for the learning disabled? As mentioned before can we use things like notecards discreetly, in case support is needed?  The answer, of course, is yes. I know sometimes there is so much support out there that you don’t know where to turn. Who will help in these specifics? Research! That is one of the things we can do and hopefully there are systems in place that can work with us. I have been working for a while on flip charts and note pads for individual situations. I am thinking, after reading this article, that there may be more of a need for these than I recognized. If anyone is out there who would be interested in having something like this, please post a comment, and I will get back to you.

Intellectual Disabilities (or PWID)

Depression

Let me tell you what is good about my pwid – everything. Does she surround herself with crisis? Sometimes, but I must tell you since we got her on her anti-depressant things are very, very different. We are having a very difficult time and she is the one who is the calming factor.

Pwid can suffer from major depression: it is shown in research that it is far higher with someone with intellectual disabilities, most of the time it goes unrecognized and goes untreated.

Recognizing depression:

The symptoms of major depression are changes in the person's emotions or behavior.

Symptoms may include:

         Loss of interest in favorite activities

         Weight changes
         Feeling sad, anxious or agitated
        Sleeping difficulties too much or little and still feeling tired
        Lack of energy and low motivation
        Feelings of hopelessness
        Loss of confidence
        Avoiding people
        Moving or talking slowly
        Being more irritable
        Difficulties with concentration and memory

However, people with intellectual disability can sometimes have some different symptoms.
They might include:

       Changes in usual behavior
       Needing more reassurance
        Loss of mastered skills
       Incontinence and/or constipation
       Anger, destructiveness or self-harm
       Complaining of aches and pains
       Sad, tearfulness and withdrawal

What Causes Major Depression?

       A sudden loss, a death of a relative, friend or pet, job loss, or changes in
       living or work environment
       Parents or family member with major depression
        An imbalance of chemicals in the brain
       Physical health problems such as thyroid dysfunction
       Various medications
        Physical, emotional or sexual abuses past or present

Getting Help

The first step is awareness and the time to get professional help is when a person’s behavior changes (for several weeks). Speak to the person's doctor, a mental health professional, a psychiatrist, psychologist or counselor.

Be with them or have someone who knows them to their initial appointments, because they will be able to provide support and any changes they have noticed.

With early diagnosis and treatment, symptoms of depression can be reduced or eliminated, and the long-term outlook is good.

Some treatment options involve a combination of support, psychological approaches and medication. Support includes information on depression and treatment options, as well as environmental factors that may contribute to depression such as loneliness, lack of meaningful activities, greater home/work stress

For each approach there are standard practices.  Whatever you do you need to be responsive to your pwid and the ways you can help them achieve the independent life they desire.

Intellectual Disabilities (or PWID)

Occupational skills

I remember the first job. It was set up with an agency that helps people with disabilities find and keep jobs with companies while paying them a small wage. This enables not only the company to get help but it encourages the PWID to achieve the goal of employment. My pwid worked for the agency a short amount of time when the company hired her full time. It was a wonderful honeymoon, but when hands change to new management the understanding went out the door.

Most people, whether they have a disability or not, like consistency. The PWID is stuck in the middle not knowing what will happen next. Employers, who are not familiar with the person with a disability, revert to using rules and standards made for people without disabilities. It’s easier for them and since the pwid is doing the job, no special allowances are even thought of again.

Most employers are not trained to help the person with disabilities. They have quotients that need to be met and find the PWID is more of a nuisance than a help. They believe all they need to do is be nice to the PWID. It is not only unfair to the person with the disability but to the company that hired them. That is why job coaches are an invaluable commodity. I believe there should be standards in place that help companies run their business with people who have disabilities.  The job coach is there to navigate the system for both the employee and the employer.

I believe getting and having a job for the PWID is very difficult, because their world is turned upside down with the demands of the job. It abruptly takes them out of their comfort zone.  The person with the disability has, for the most part, been the center of attention. Because the need is great, caretakers and parents have tried many venues to get them help, which means the focus has been on them and what people can do for them.

Taking the pwid from the sheltered environment and placing them in a position to help people rather than get help is a change in the routine. That is why they have organizations to help the pwid adjust to the change. You can ask your local case manager for help finding an organization that will enable your pwid to aspire for a job that will help with independence.

The ADA (Americans with Disabilities Act) is out there to help the person with disabilities have a respectful and dignified role in the workplace. I know that it is uncomfortable to realize that people would not automatically give the respect the PWID deserves, but ignorance is at play here. Most people don’t understand that people with disabilities have feelings and are not stupid.

 I would strongly suggest that you, as the caretaker, familiarize yourself with pertinent information, concerning their pwid. The employers do not have the right to change the rules because your PWID does not meet the norm. Employers sometimes treat PWID as second class citizens and assume it is okay. We need to be like a dog with a bone providing a quality standard for the person with the disability. The employers will, hopefully, understand that the PWID not only have the right to be treated fairly but there is also a legal obligation for that to happen.

Intellectual Disabilities (or PWID)

Practical skills—activities of daily living (personal care)

“Wash your face, brush your teeth”, does it ever stop? For a caretaker or parent of a pwid probably not. I don’t know about you, but I thought parenting only lasted 18 years or so. HA. My pwid is pretty high functioning, but wasn’t always. The diagnosis was pretty grim. I just stuck to my guns and worked with her. Just remember a diagnosis is NOT written in stone, it is someone’s perception of what the situation appears to be. After months of working on the fine and gross motor skills, we worked on speech and language. After that we worked on communication etc. etc.
etc.

What can we do to impress the seriousness of personal care? In most cases this is the forefront of the diagnosis of cognitive delay or pwid? Where does the disability begin and laziness take over? Hard questions for sure, but they need to be asked. Are we enabling our child or are we encouraging them? Certainly a fine line but the differences can be monumental.

Firstly, the judge needs to be the child. How are they reacting to the directives, with hostility or confusion? Let the child be the barometer. If, in fact, it is hostility, chances are pretty good we need to reassess the tasks we have set before them. They are not difficult enough. We need to challenge our charges and not frustrate them is the golden rule. Sometimes, I believe, we need to frustrate a little. People were very critical of me, but the results were astounding. Her disability rose from moderate to mild. Was I difficult- absolutely? But the proof is in the pudding. Am I also saying that I no longer have to be a parent? No, no I am not, but let me say it is easier.

You can’t just let them take control of their own bodies, the standard most people have is not their standard. The embarrassment level is not well defined here. They forget to do what is expected or they don’t really think it matters. They don’t understand the severity of the tasks set before them.  Don’t try to be their best friend. They need the stability of a strong leader. They need someone who can tell them right from wrong in a firm but kind way. Stay firm and know that when they get frustrated it can be a difficult situation, especially when there is an issue of depression. Hang tough, it will only get better.

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.