How frustrating this must be - any suggestions?

[homesteadmamma]

Part of dd's disability is she has a hard time retrieving things. She'll go to ask a question or say something and its totally gone. She can't bring it back up. (She has microcephaly - small head).

How frustrating it must be for that to happen over and over again. I know its frustrating for me because I don't have a clue as to what she wanted to say.

Does anyone have any suggestions as to how I might help her in remembering what she wanted to say.

[guest2]

Have her write down her thoughts as soon as she has them on a notepad if it is something that she wants to share with someone else. She can carry the notebook with her in her pocket so it is always handy for her.

[DawnM]

CJ, I totally understand the frustration. Word retrieval is also a problem for my dd and always has been. Luckily, it has gotten better as the years have gone on. She could even look at me and still say, "Daddy.. I mean Ryan.. I mean MOMMY.. oh boy, sorry Mommy" and then go on to whatever it was she was going to tell me. :-) She obviously KNOWS I'm Mommy... she just couldn't find the word.. she was in the right word family but got stuck. She found it very annoying.

It's usually during spontaneous conversation and is more short term than long term. Do you find that with your dd as well? In fact, my dd's long term retrieval is amazing. When we want to remember something, or a date or to do something, we tell her. She's like a walking alarm clock/day-timer.

The brain is like a filing system and I guess some of the wires get just crossed with certain disabilities (and age! )and things get "lost" in the system. What I did/do is if I had at least a little clue as to where she was going, I would ask her prompting questions... or if I didn't have a clue I'd ask, was it about schoolwork? which subject? was it about something you read? a computer game? about someone in particular... etc. Or I'll tell her to "back-up" her actions.. what was she doing before she came in to ask me, or tell me "whatever".... this sometimes sparks her memory. More of a problem for her was retrieving one word as opposed to having lost a whole train of thought .. but either way, it's a challenge.

Patience, love and understanding. And I'm sure you're doing all three. (hug)

[homesteadmamma]

Debbie, thanks for responding. With our dd, she wouldn't be able to write it down. By the time she got one word written down, it would all be gone.

Nancy, yup thats our dd almost to a "t". The most frustrating part for me is that she expects me to know what she was wanting to say. She says "you know" - nope I don't know. She also keeps saying "I can't remember". It just breaks my heart because she tries so hard, kwim.

[guest2]

to you and your daughter CJ.

[SewCrafty]

Big CJ for you and your dd

[canadian gardener]

Love and hugs to you and dd CJ. No big solutions here. I know how you listen quickly to her, and you don't make her wait either, which was important for ds with the ADHD problem. Sometimes kids like this have to interrupt or it's gone for good. I've never seen you make her wait which is good.

Word retrieval becomes more of a problem for women around menopause which says that something in hormones does help. Maybe a couple of years, and maturation hormonally will help a bit.

Just batting ideas around a bit, but would having her seen by a good occupational therapist help? They were the ones who did the most work with rehabbing strokes and brain injury in social and communication as well as daily living skills.

They would be the specialists most likely to be able to help.

[DawnM]

CJ wrote: "It just breaks my heart because she tries so hard, kwim."

I exactly what you mean CJ. I really do. ((hugs))

Has she ever had, or do you have available to you, a Speech and Language Pathologist? That's what this falls under. Our dd had S&L therapy from birth (beginning with feeding problems) right up until she left school for me to homeschool her (grade 8). It was provided by different sources (medical/school board, and even private) at different times depending on the circumstances and what country we were in.

Whien we lived in Canada and DD was quite young, my DH and I also took the Hanen Program through a local treatment centre where dd went to nursery school and had all her therapies. It was wonderful and for our DD, came at a good time for her development. This program taught us, the parents, how to best help her with her s&l problems.

Barring any language therapy, there are great sites available online and you could probably do a little digging to find a few more suggestions based on what you find her needs are. I wish I had had the access to the internet when my dd was really young and we were right in the middle of all these therapies. Mind you, it still helps because no matter how old she is, or what happens... there's always something that can be done to improve her skills. I'll never give up.

I think that with time, and my dd's understanding of what her problems are, that she has learned ways to compensate and cope. Still trips her up though ... it's tough to watch at times.... other times she has a sense of humor about it, so we take our cues from her.

Hang in there, and take care.

[Guest1]

CJ & DD....

From what I remember of my psych classes - they say to take 3 slow, deep breaths and it's supposed to help.....could she try word association or circumlocution?? Not sure if that would work either but mayb if she had a trigger of some sort....poor baby.....my heart goes out to you both....

[voodidit]

I wish I could help you in some way. I myself have the same problem at times due to the MS. I can see what I want to say in my mind but it won't come out verbally no matter how hard I try. Sometimes it comes to me later,but writing itdown wouldn't work for me either.

It always turns into charades with me..maybe that would work?

[heavensent_7]

C.J.

Lucy does this all the time and I've seen her get so frustrated that she crys and pulls her own hair and punches herself! She's reduced me to tears many times

She can say things like 'you know today, no yesterday, no tomorrow, no - OH FORGET IT!'

Sometimes she signs as she speaks, which seems to help her but I don't know much signing so that's trial and error and I've learnt NEVER to but in when she's speaking, as it puts her off what she's saying and makes the problem even worse.

But overall to be honest, we haven't found anything that REALLY helps her that much - She can also sing better than she speaks, when she couldn't talk at all, that was the first thing she ever did, sang a favourite song that was on the radio right the way through I knew then that one day she would speak again but it has been very hard.

I really feel for you and DD - this is so hard to watch them in such frustration and get so upset.

I don't really have anything helpful to offer, I just wanted you to know that I know what it's like and I feel your sadness.

[paelthom]

CJ
No advise but lots of hugs for you and your precious daughter.

[Mom23boys]

Originally posted by SewCrafty
Big CJ for you and your dd

[Jerseygirl]

I have had clients use a picture exchange on a ring or in a mini photo album filled with typical items or people. When they are ssearching for a word, or dealing with somweone who may not understand them, they can pull out the appropriate picture to fill in the blanks of speech. It takes some of the mental pressure off, easpecially for those with good visual recognition.--Kellie

[cozyquilter]

CJ, lots of great information here posted by others!!

My DD also has microcephaly - small head and verbal aprixia, and is difficult to understand at times, even if she does remember what she wants to say...it can be very frustrating for her, and myself. She seems to get most upset with me, her Mom for not understanding.

DD has also learned sign language and this has helped a great deal. She always has a sign language book at hand, so if someone doesn't know sign language she shows them what she want from the book, almost like a communication board. It also seems to help her find the word her mind is looking from by scrolling through the signing book. She has a number of signing books, and uses them all. Like Kellie said, takes the mental pressure off a bit...

We also have spanish to english books and she will use those in a similar manner.