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.