Re: selective mutism/ - Long

[Guest guest]

I don't know if you meant for me to literally answer the

questions posed or to just think on them. I answered you because

I'm hoping our experience might help others and that you and others

might have some insight as to which direction we should go now.

> how old is your child?

He is now 3 and a half.

> What activities or schooling is he involved in? (preschool etc)

He goes to a play group 1 X week, a music group 1 X week and a

nature pre-school (I stay with him) 1 x week and swimming 1 x week

with one or more children.

> What children does he play with at home or elsewhere? Are any of

them " late talkers " or speech impaired like he is?

He usually plays with a small group of children that are involved

in the same activities that we are. They are his age or 4 years

old. None of them are late talkers.

> Does he try to communicate with other children or adults?

Yes to both but only if he knows them. He will on occassion try

to talk with a fire fighter or police officer. With the kids he

usually speaks in one or two word utterances but he will use more

when trying to communicate with known and trusted adults.

>Does he exhibit frustrations at home and elsewhere when he is not

understood by others?

YES, more so at home. He gets angry at home but will

occassionally cry when others out of the family don't understand.

>Did the neurologist ask you any of the above questions prior to

his/her diagnosis of selective mutism?

She asked how he reacted with other kids like if I bring him to a

playground. I said he was selective. This was a year ago and he

was only two. Although he is still careful and watchful around kids

he doesn't know even now. Mostly she said she was concerned about

SM because he would not speak to her. She didn't seem to be aware

that she was being condencending. She thought that he should talk a

blue streak to her, answer all her questions. She felt I need to

drop him off at day care because he looks to me to interpret for him.

> This is why we recommend in The Late Talker book to videotape your

child in " normal " situations outside of evaluation situations to

bring to the exams -so they can see your child at play, at

preschool, at home, at the store -etc.

This was offered and we were told it wasn't neccessary.

>

> Preschool children " too young to be that self aware " .? They

> probably don't understand the words " self aware " they just know

>they want to cry, because (for example) they don't know how to make

> someone know they don't want a peanut butter sandwich -they want a

> glass of water. Or that for example his brother ny just broke

> his favorite truck and laughed. That he can't say " I can't. Help

> me " Geez I wonder what medications would have been prescribed to

> the children in our group who got " purple welts " on their heads

> from banging their heads on the floor in frustration when others

>didn't understand them! Check the archives. This is why we have

>an entire chapter devoted to " dealing with the child's frustration "

>in The Late Talker.

I believe and believed even when Nick was two that he knew he

could not speak like other children. I believe that made him self

conscious and less likely to attempt speaking, especially in a

testing situation. This neurologist told me that he was too young

to be self aware so he could not be self conscious. Now I deal with

play group moms and even my own mother making comments about Nick's

anger. I know he needs to learn appropriate means of dealing with

his frustration but it makes ME angry that these people are so

judgemental with NO idea how difficult it must be for him. I mean

come on, all three year olds need to learn how to control their

anger and a lot of those three year olds can communicate!

>

>And by the way -the " negative " behaviors went away without

>medication and without the psychological diagnosis when the

>child....started to talk/communicate. Amazing but true.

I sure hope this is the case with Nick. He is up to 4 and 5 word

sentances with word approx. but I still see an awful lot of anger

and temper tantrums.

>

>Also -preschoolers should be tricked into believing they are just

>having fun while they are learning to talk. Apraxic children have

>a long road of therapy ahead -so you don't want to burn them out

>at three by " forcing " anything! Check the time -time to look

>elsewhere for professionals to work with your child.

This comment more than anything else you have said scares

me. I have had issues with his therapy since it's start but have

stayed with this therapist because she was willing to not touch him

until he was ready (another SLP restrained him on our first meeting)

and his current SLP went for a weekend of PROMPT. BUT I know he is

not being tricked into learning to talk while having fun. His

therapist usually with holds things from him to get him to say the

word or sound. He frequently gets mad at her and tells me he

doesn't like her. He has made such gains (most of them seen after

EFAs and at home) that I was letting it go but now he seems to have

hit a wall and I'm seeing more anger. There also seems to be an

increase in words that he can't say and then we see the melt down

because we didn't understand him. He has also started to repeat the

first word in his sentance a number of times. I have exhausted our

hunt for an experienced SLP in Southern Maine. There is only one

other PROMPT trained in our area and she was the one that did the

restraining. I also carted Nick back and forth to a PROMPT trained

SLP an hour and a half from us this summer (three hours total in the

car poor kid!) but they said they could not fit us in for their fall

therapy sessions. Nothing in my life has frustrated me more than

this search for good therapy! It rips me up and I almost believe we

would need to move to another state to find better.

>Was this a pediatric neurologist?! If so -I'll be sharing some

>great information next month that will hopefully help all.

Yes it was a pediatric/adult neurologist. We will not be going

back to her. I recall your saying that we should have periodic

check ups with neurologists though. If I am recalling correctly can

you explain why you think that is important? If it is, then I have

to find another neurologist! Anyone know of one in New England!?

McCann

> =====

>

[Guest guest]

I just had to respond to part of your comments about your son.

has had terrible tantrums since she was 3. They finally

started going away when she started talking better at 5 1/2.

My mom would compared to a down syndrome child that she knew.

The down syndrome boy was much better behaved.

Well, I think it is probably harder for our children because they

are actually smart. They understand everything, and they really

want to communicate. I've never been to a foreign country where no

one spoke English. (I've been to Mexico, but you can usually find

someone who speaks English.) I think it would be frustrating to

most of us to communicate in a foreign country. I think we could

get angry to if in that situation.

is almost 8 now. She is usually great in public, but she does

have meltdowns at home. However, now they are much milder. She'll

still scream and slam doors. The other thing is that she responds

better to discipline, now. If I tell now that she'll miss her

favorite show or won't be able to go to a friends house, she'll

start acting better. At 3 (or ever 4 and 5), that would not have

worked. Also, when she is calm, will actually talk about what

is bugging her. We can actually work on ways to keep her from

getting frustrated and angry.

We did this without medication or any other means but patience and

working on communication. also always knew that she should

not get angry, and she had unacceptable behavior.

One other thing is that I've always validated her feelings. I tell

her it is okay to be mad or frustrated, but it is not okay to hit,

scream, bite, etc.

Good luck! Remember that you are not a bad mom. Our kids are

difficult and there are not many people who have been through this.

Thank God, we have the internet so that we can now have a place to

talk to other parents that have gone through similar situations with

their kids. (Thanks !)

>

> Has anyone heard of a child having apraxia and selective mutism together?

>

> My son age 3 was dx earlier this year by a dev. ped to have verbal

> apraxia. At his third birthday he had only one spoken word. After 6 mo

> of private speech therapy and supplementing with EFAs he has made good

> progress, adding 2 or 3 spoken words per week, speaking occasional 2

> and 3 word sentences at home, and adding to his sign language vocab

> also. He tests as normal in every way except spoken language.

>

> This fall he began taking speech 3 x week at the school. One of his SLPs

> believes that he may have selective mutism along with his apraxia

> because he will not try to speak to her and will not try new signs for

> her unless she helps him and forms his hands in the correct way. Nothing

> she offers will entice him to speak or try a new sign, even if it is

> something he badly wants, a favorite toy or game. He seems to like his

> new SLPs even though I know that he misses his private ST whom we can no

> longer afford for him to see. The SLP thinks that he might do better if

> she came to our house, though he seems to enjoy going to the school and

> playing with the interesting toys there. He is somewhat shy, but will

> often sign to strangers his name sign(letter D) and hold up three

> fingers to tell his age. My feeling is that he may be feeling pressured

> and needs more time to get to know and trust her. She is frustrated at

> the lack of progress this past six weeks and wondering if she needs to

> try another tack with him.

>

> Jeanne, mom to 20, Sabri 16, Lily 8, 3 1/2

[Guest guest]

Suzi wrote:

Good luck! Remember that you are not a bad mom. Our kids are

difficult and there are not many people who have been through this.

Thank God, we have the internet so that we can now have a place to

talk to other parents that have gone through similar situations with

their kids. (Thanks !) >>>>>>

Thank you! Having received so much criticism from people, including

professional types such as a nurse practitioner, an audiologist, a pastor, and

told that 's lack of speech was due to my overproteciveness, and to my

teaching him sign language to supplement the signs he had made up on his own,

that it was nearly a relief to get the apraxia diagnosis. The NP actually told

me to ignore his signs and pretend not to understand him in order to force him

to talk. I could not do that, but I did hold off on teaching him more sign. When

he started with the private SLP, she began right away to teach him the color

signs. He was excited then to be able to sign to me things, such as that he saw

a red tractor going up the road or " Where my green truck? " So many stories

locked up inside him, I knew he would tell them to me if he could.

has come so far. In February, his only spoken word was " meow " .

He was dx in March and I began to search the internet and read 's book and

to give him EFA supplements. Some of the words he has spoken just this past

week are " outside " " apple pie done eat " " one, two, three, four " " water, rain "

" old, new " . He has been collecting wooly bear caterpillars in his bughouse and

he is very gentle with them. They are all named " Pooey " . There is " old Pooey " ,

" new Pooey " and well " Dead Pooey " after a totally unintentional mishap occured

when Pooey the First was left unsupervised on the bathroom floor...

Even so, there is much to be thankful for =)

Jeanne, mom to , Sabri, Lily & , 3 1/2, verbal apraxia