Hi
My son is two years and four months he is non verbal and was diagnosed with fragil x . I was just woundering if most children with fragil x are non verbal. I just want to know if my son will talk one day. Is anyone going or has gone through the same thing. I hope you all understood my question.
Thank you
MY oldest son with fragile x didn’t start talking until he was four years old. He is six today and I still have a hard time understanding him. On plus side he does talk!!! Is your son working with any therapists? I put mine in speech therapy. Also at home we did sign language. I got a few of those signing time videos which was a fun way to learn together. Once he had a visual he would start saying the word. Picture charts are also an idea. He has to have some way to commmunicate or you both will go crazy! Don’t give up. i remember thinking my son would never talk. Get him in therapy. Read lots of books to him. and have faith!> To: tarranne@hotmail.com> From: fragilex-cpt6621@lists.careplace.com> Subject: [fragilex] verbal> Date: Mon, 5 Nov 2007 11:40:15 -0500> >
My son is 5 1/2 and he is essentially nonverbal still. His receptive language is very good. We know he gets what we are saying and has a huge receptive language that we test with pictures and books. He has developed a sign vocabulary of about 30-40 signs. we have done picture cards but they are cumbersome for us. It is strange because he will sometimes say whole sentences spontaneously or a word here and there that are so clear. he does not imitate well and if you try to pressure him you rarely get it out of him. He makes lots of sounds now and is beginning to make them in sentence structure. He may not speak but he sure communicates in many other ways.
He has a little different beginning then most US kids have. he was adopted from Bulgaria where he was probably barely spoken too or even heard speech. He got here when he was 2.75 years and has been in speech at least 2 times a week and we read to him and talk to and at him to ad nauseum. Every moment is a learning moment and an educational activity(even while sitting on the potty.
On another list this has just been posted and I was so happy to see that many with older Fragile X boys noted that they had talkers at 7-10 years old that had asolutely no speech at 5 years old. It will be delayed but I am soooooo waiting to hear those words on a regular basis.
On another note…all you newbies with new diagnosis. Get your child on Medicaid Waiver list immediately. The waiting list in NC is over 4 years to get services (like respite and personal assisstant and medicaid as a secondary). This is typically a CAP waiver andn in NC it is the MR/DD. Use all services available to you and learn them early. You can never get enough help and all that help can educate your child. we use our respite and PA hours to maintain our vigorous task schedule and keep our little boy engaged and socialized. Your child also qualifies by diagnosis for at least speech and OT services paid for by the state(possibly PT if motor delayed). All developmentally delayed kids will benefit from preschool as well for the socialization of it and that should also be paid for by the state through your child’s IEP.
Little tangential but wanted to get that out.
Mary
----- Original Message ----
From: Tarra fragilex-cpt6621@lists.careplace.com
To: momofalexi@yahoo.com
Sent: Tuesday, November 6, 2007 10:59:39 PM
Subject: Re: [fragilex] verbal
I just wanted to let you know that he is receiving speech and OT services. He has come a long way. He is very social he will bable once in a while but not really. They have started him on the picture pecs where he attends therapy. He is working with a blank card and eventually the cards will have pictures. His receptive part is perrty good it is the expressive that he is having problems with. Hopefully and I do have faith that he will talk one day. His speech therapist has been a blessing for him. God gave him a wounderful angle. — On Tue 11/06, Tarra < fragilex-cpt6621@lists.careplace.com > wrote:
From: Tarra [mailto: fragilex-cpt6621@lists.careplace.com]To: aluis31@excite.comDate: Tue, 06 Nov 2007 22:59:39 -0500Subject: Re: [fragilex] verbal
My son grunted for a long time. He was about 3 when he started saying actual words; he’s almost 6 now, and he is doing a lot better. He says some sentences, and he is trying to learn new words and phrases. He never did well with imitation. He likes to pick up things when he thinks nobody is paying attention, or telling him to do or say something. (Which is one reason he has a bad word addiction…) It just takes him longer than other kids. But stuff like Thomas…he knows all the trains names, and can sort of tell the story when he looks at the pictures in the book. He picks up very quickly when it’s something he’s interested in.
I will be out of the office Nov. 12-16 at the Enterprise Community Conference. I will be checking my emails at least once each day. If this is an emergency, please leave a voice mail at 410.772.2746. I will be checking voice mail more often. Otherwise, I will repsond to your request upon my return on Nov. 19.
Have a wonderful day!
My nephew was five before he started talking. He’s 24 now and we can’t shut him up. Don’t worry - your son will come around.
Hi, my son was 4 years old when he started to even say mommy or daddy. We were lucky,we got to put him into a special preschool where they taught him sign language and eventually he started talking. He is 19 now, he has been taking speech therapy for a couple of years now to improve his speech and learn how to communicate with people. He will not look straight at them but he will talk to people he knows. He was just diagnosed with autism and fragile x about three years ago now. We did get funding till he turned 19 but now he gets disability and we use that. So you are fortunate to have found out so early on. With a little help your child will soon be talking.
I am so happy to hear that they will talk sometime–my son will be three in June and he says ma, da, duck, tickle–he’s had speech therapy and DT for over a year now. We just found out yesterday that he has Fragile X–so I am a newbie and will look into that medicaid waiver t help continue with therapy for him. In the State of IL it ends at age 3 unless you put them in a public school from what I understand. Because of his sesnory issues I have chosen a small preschool in a chruch environment and am not sure right now what rights I have for therapy for him. Does anyone else know that lives in IL? Thanks
I will be out of the office May 5-9 and will not have access to email or voicemail. If this is urgent, please call 410.772.2759. Otherwise, I will respond upon my return May 12.
Have a wonderful day!
i can’t really give you any info about IL and the ins and outs of therapies and rights in IL. But I do want to tell you–My daughter has very limited speech. She is 6 yrs old, She didn’t say Mom until she was five!! I’ve waited forever to hear her say it!! She is in a public school, in a special classroom-she gets speech therapy 4x a wk, OT 3x a wk, PT 2x a wk. And what a wonderful school year so far!!! she has made leaps and bounds compared to where she was last year. The thing I’ve found having a disabled child is that every little thing she accomplishes is overwhelming. I savor every little moment. Good Luck to you! Take Care
lisa
Nic L fragilex-cpt6621@lists.careplace.com wrote:
I know how you feel. My sons are 9 and 3 . My 9 year old just started speaking in full sentences and learned to trace his name hand over hand. My 3 year old is saying words but is really dutchy and points alot because he cant say the words in full sentences.
Neither one is fully toilet trained yet. Noah my 9 year old goes to a school for special needs kids because public school did not work for him. Keep up the good work and remember to breathe and take it one day at a time.
lcc fragilex-cpt6621@lists.careplace.com wrote:
I just found ou that my son also has high levels of tin, aluminum, cadmium, lead, antimony and arsenic of all things from his hair sample sent it-- does anyone know about anything like this–I am going to rethink our Food purchases but am sure that it must be in my house–I have an old farm house BUT have pulled out all of the lead based wood about 4 years ago, my son isn’t even 3 yet. Help, any answers would be appreciated.
Hi Nic,
My son also had his hair tested as well and the practioner who requested it
cautioned us about taking the analysis as the complete truth. Our
environment carries so many of those toxins in the air that it is quite
possible the toxins are airborne and can be found anywhere people live (as
opposed to something just in your house). If you are concerned, the sure way
to find out is to ask your doctor for a blood test for all of those
chemicals. That is a much more accurate reading. Another note, if the hair
sample is not from the root it is old growth meaning your son was exposed a
long time ago. Hope this provides some insight.
Regards,
Laura, mom to…
Jasper - Full Mutation
Toronto On
----- Original Message -----
From: “Nic L” fragilex-cpt6621@lists.careplace.com
To: laurasworld@rogers.com
Sent: Monday, May 05, 2008 11:05 PM
Subject: Re: [fragilex] verbal
Our son will also be 3 in June and he is also non-verbal. His only word until now is ball and we cannot wait to hear mama or dada…it is quite frustrating…especially because we have a 2-year old non-fragile-x little girl that is beginning to say those words. He has been getting speech for about the same time as your son and we’re slowly seeing progress. Stay strong and good luck.
To: aluis06@hotmail.com> From: fragilex-cpt6621@lists.careplace.com> Subject: Re: [fragilex] verbal> Date: Fri, 2 May 2008 20:06:18 -0400> >
My 26 month old son, Lucas, has said over 50 word approximations, but often will never attempt the words again and does not say many words clearly. He uses a few signs which have really helped to encourage speech.