Accepting intellectual disability

[Anonymous]

OP - If your young DC has limited verbal ability whenever your child is evaluated you need to find a provider who has experience in testing nonverbal children -- whether for a neuropsych, educational evaluation or speech evaluation. Then you want to be sure that testing instruments are being used suited for nonverbal children. Whether your child is in early intervention or a preschool class setting for students with disabilities, your primary goal should be to find a way to develop a consistent means of communication for your child. You will need a very experienced speech therapist/team who can explore whether technology or sign language can go hand in hand with typical speech therapy approaches. A first goal would be a consistent yes/no response. I would also encourage you to look into signing videos for young children and to learn some basic signs yourself. It is important to also have a full audiology check to be certain DC's hearing is fine.

While it is extremely difficult right now to do so, I would not set hard and fast limits on what your child may be able to accomplish in time. Exposure to typical children and to typical childhood experiences is very important in giving your child a good solid early start. In my opinion for a youngster with ID, an extra year in a preschool program is ideal to continue to work on developmental milestones across the board before public education begins. Build upon your child's interests to develop skills -- for example if they are crazy cars and trucks, then use this avenue to introduce colors of trucks/cars, counting trucks/cars, simple sentences, concepts such as fast/slow, up a hill/down a hill etc.

Give the young child the opportunity to express likes and wants. Have expectations of appropriate behaviors and teach basic skills such as eating, dressing, putting away toys etc. early as this all plays into an independent life in the future. I can't say there is not loss and there is worry lifelong on what may happen. But daily life also has its own pace and fears of the unknown will give way to many unexpected accomplishments, too. We have three daughters and our youngest had a disability with ID at birth. She was the first in our local school division to demonstrate that one with ID and her disability label could learn to read pretty much on time and with good comprehension, but we gave her the setting that she needed to learn in which was self-contained with mainstreaming out K-4. She had private speech from 3- 8 year-round as well as school services. In our community she received an IEP Diploma and then went to a strong, specific Post High program for two years. She was able to get a part-time job upon school completion which she has maintained. She has also volunteered at senior centers one afternoon a week, too. She has taken private piano lessons for several years working with piano teachers who understood our goals for her -- personal enjoyment and progress in time. Now some are difficult enough with chords that I who have had piano as a child can't just sit down and play the first time through. She has enjoyed weekly outings with a college student for several years to round out other therapeutic recreation activities. She could read much of this post and would tell me to get off the computer and pay attention to her. Her IQ has always been a solid 55 which puts her at moderate ID range. I was always much more interested in the related subtests some of which were well into the 60s on reading and to her overall social-emotional behavior. She has seen herself as a competent learner with some limitations. It has been an interesting journey

[Anonymous]

Anonymous wrote:

OP - If your young DC has limited verbal ability whenever your child is evaluated you need to find a provider who has experience in testing nonverbal children -- whether for a neuropsych, educational evaluation or speech evaluation. Then you want to be sure that testing instruments are being used suited for nonverbal children. Whether your child is in early intervention or a preschool class setting for students with disabilities, your primary goal should be to find a way to develop a consistent means of communication for your child. You will need a very experienced speech therapist/team who can explore whether technology or sign language can go hand in hand with typical speech therapy approaches. A first goal would be a consistent yes/no response. I would also encourage you to look into signing videos for young children and to learn some basic signs yourself. It is important to also have a full audiology check to be certain DC's hearing is fine.

While it is extremely difficult right now to do so, I would not set hard and fast limits on what your child may be able to accomplish in time. Exposure to typical children and to typical childhood experiences is very important in giving your child a good solid early start. In my opinion for a youngster with ID, an extra year in a preschool program is ideal to continue to work on developmental milestones across the board before public education begins. Build upon your child's interests to develop skills -- for example if they are crazy cars and trucks, then use this avenue to introduce colors of trucks/cars, counting trucks/cars, simple sentences, concepts such as fast/slow, up a hill/down a hill etc.

Give the young child the opportunity to express likes and wants. Have expectations of appropriate behaviors and teach basic skills such as eating, dressing, putting away toys etc. early as this all plays into an independent life in the future. I can't say there is not loss and there is worry lifelong on what may happen. But daily life also has its own pace and fears of the unknown will give way to many unexpected accomplishments, too. We have three daughters and our youngest had a disability with ID at birth. She was the first in our local school division to demonstrate that one with ID and her disability label could learn to read pretty much on time and with good comprehension, but we gave her the setting that she needed to learn in which was self-contained with mainstreaming out K-4. She had private speech from 3- 8 year-round as well as school services. In our community she received an IEP Diploma and then went to a strong, specific Post High program for two years. She was able to get a part-time job upon school completion which she has maintained. She has also volunteered at senior centers one afternoon a week, too. She has taken private piano lessons for several years working with piano teachers who understood our goals for her -- personal enjoyment and progress in time. Now some are difficult enough with chords that I who have had piano as a child can't just sit down and play the first time through. She has enjoyed weekly outings with a college student for several years to round out other therapeutic recreation activities. She could read much of this post and would tell me to get off the computer and pay attention to her. Her IQ has always been a solid 55 which puts her at moderate ID range. I was always much more interested in the related subtests some of which were well into the 60s on reading and to her overall social-emotional behavior. She has seen herself as a competent learner with some limitations. It has been an interesting journey

DP, but this is very strengthening.

[Anonymous]

While it is extremely difficult right now to do so, I would not set hard and fast limits on what your child may be able to accomplish in time. Exposure to typical children and to typical childhood experiences is very important in giving your child a good solid early start. In my opinion for a youngster with ID, an extra year in a preschool program is ideal to continue to work on developmental milestones across the board before public education begins. Build upon your child's interests to develop skills -- for example if they are crazy cars and trucks, then use this avenue to introduce colors of trucks/cars, counting trucks/cars, simple sentences, concepts such as fast/slow, up a hill/down a hill etc.

You must know my son. He seemingly could not learn to count or learn his colors. But when we’d go for walks, he would be able to tell you the color of the cars we passed. That’s how he learned to count as well.

I agree that it’s important not to just accept that gets said about prognosis. I used to tell people (teachers, therapists, doctors, etc. ) that maybe they were right but that we were going to wait and see. I often felt like everyone but me was giving up. In the end my son did better than the predictions.

[Anonymous]

I am prior poster about our youngest daughter. We must have rolled a red ball to her thousands of time saying ball roll. Interesting when she started speech at 3, she had about 200 words which I had, of course, jotted down as she said them; but she did not chain or connect even two words. The speech therapist started with wind up animals of a cow and sheep I think and "cow walks" etc. Also what you find as you go with speech therapy is that as it goes on, it relates to reading skills such as sequencing activities, pronouncing words clearly and correctly etc. To be clear, we knew early on that she would be focused on acquiring basic skills, but also the abilities that would serve her well in the work world. While it takes time getting used to her low speech volume and clarity at times, she has excellent social skills and workplace behaviors. She knows safety rules at home and in the work setting. And while you will hear the use of "functional skills," please do realize that this can mean reading the newspaper each morning about the Washington Football Team, scanning the headlines to know that Biden is under stress for this and that etc. It also means having her cookbook from which she chooses recipes to make with me and maintaining her own calendar of work and volunteer activity. She has the right bag set for her job, her volunteer job, piano lesson or the library a day or more before. While she does not have an abstract concept in her brain, she is excellent at rounding up numbers if we go shopping, she can read and choose from a menu within the cost range suggested as in we are not going for shrimp which is likely the most expensive item! Functionality has many different levels.

For OP and others with an ID disability, it is important to get in touch with your local developmental disability agency which in Virginia is your Community Services Board (CSB) to be sure your child/teen has an intake done to see if one qualifies to receive Case Management services and be placed on the Medicaid DD Waiver Waiting List. In Virginia there is a waiver that many are able to qualify for with no waiting list called the C+++ Waiver which can offer in-home care assistance, respite etc. if one meets the criteria. For older teens and young adults, folks are using the waiver to have a son or daughter out in the community and learning in-home skills, too. To be truthful, families often find a way to supplement the official low hourly wage. We have our daughter on DD Waiting list, but have not used the other waiver personally. I have found that college students are great and once you get in the door, it is very easy to find another as students graduate. It is very good to have made connection to the DD Agency in your area should there be a crisis situation so that those who step in will have someone to help them navigate the system.

[Anonymous]

Anonymous wrote:My child has limited verbal ability, so what is the best way to assess ID in that case?

You want a non-verbal IQ test like the Leiter.


My son, now a young adult, technically has a Dx of Mild Intellectual Disorder. But there's a 30 point gap between his nonverbal and verbal IQs. His nonverbal IQ is typical. So he functions quite differently than his friends who have similar verbal IQs on a traditional IQ test.

That's why you want to dig down into these scores and get a full picture. The biggest problem we found is with ID or and ASD disorder, teachers marginalize kids quickly. You have to keep fighting to get them to acknowledge your kid can learn.

[Anonymous]

Anonymous wrote:I don’t understand people asking what schools go to 21. Public schools are required to keep kids until 21 in this situation. That is what my daughter will do. She gets retained one year in elementary, one year in middle school and one year of high school. She will leave on her bday without a high school diploma.

She can stay until the end of the semester in which she turns 21.