Need advise and a shoulder to cry on

Sophia - posted on 10/17/2012

When my son was unable to talk.. I worry at times .. but I knew he was mine.. and I could never write him off.. So I fight for him my words were there for both of us. I made peace with the fact that my love for him could not change even if he never talk. I ask god to give him the gift of speech ... but I also ask god to give me peace to love my son as he was. I found great peace in knowing that he love me for me .. so I need to love him for him. I just know that when you have reach that place of you are mine .. you will never be as stress. people can't write him off if you dont let them.

Mildred - posted on 10/11/2012

OK, first of all, here's a hug for you! I understand your terror, I have a son who did not speak at all till he was 4. He's going to be 12 in Jan. 2013 and now the most repeated request we have for him is, "Can you stop talking for 2 minutes?" :) AND his vocabulary is pretty amazing for his age so there is definitely still hope for your son. My son's official diagnosis is FASD but every specialist that has seen him says there is definitely some autism as well.

I remember when we worried because he had no imaginative play. But I also remember the day I walked into the living room to find him playing with a number of beanies, helping them 'climb' the filing cabinet then squealing FOR them as they 'jumped' off the diving board. He had no words at that point, but I could tell by watching him and by knowing he'd watched diving at the Olympics on TV the night before what he was playing.

But I think you may also need to sit back and think 'worst case scenario'. WHAT IF he never speaks? What will that actually mean? Why is speech (or lack of it) such a fear for you? Will it change your love for him? I don't think so, I think you'll probably love him more. I worked with physically and mentally handicapped kids and adults before our special son arrived and there were many that had no speech. None. Zilch. But there was always something to love about them, even though I wasn't their mother. Some have amazing smiles that light up the room when you do something they like. Some use gestures or facial expressions or they hum when they're happy, or pat when they're not. You will always do everything you can to help your son become all he can be, but you'll also learn to focus on what he CAN do and not sweat what he can't. You'll have sad times when your heart will break for him but you'll also have times when your heart nearly burstd with joy over a small accomplishment, or another kid who is kind to your child, or a small gesture he makes that shows he knows you're his mommy and his safe place.

Hang in there, learn all you can, talk to people who know how to help, and above all know you are NOT alone and there WILL be joy in the journey!



Mildred Carroll

Helping Families Work at Home

www.Mom2Six.com

Debbie - posted on 10/03/2012

With music there's always hope. Get him an I pod nano. Music calms the savage beast. I have a very aggressive, very large six year old girls. High functioning autism. On her worst days the I pod nano is a savior. Give it to him 24 /7. Also get an iPad and a program called proloquo2go. This will help him to communicate and can be used by my nonverbal 16 month old perfectly. Don't give up, go out that's my motto and I am a mother of five with two autistic children and a baby dying from cancer, two strokes and a missing chromosome. It won't last forever and some day you are going to miss this.

Gail - posted on 09/26/2012

"If I told him to come to me, he would. Or get his shoes, give me his cup, etc. He did play with toys but... when I look at the way other kids played it wouldn't be stereotypical play. Not at that age. It was more, he liked cars, and would line them all up."



Oh, thank you, thank you, thank you ! This is EXACTLY how my son is. Prior to his 3rd birthday (this past summer), he was totally non-compliant and the experts told me it was because he is SEVERELY autistic. But something told me that he probably did not understand a lot of what was being said, so I went to work on his receptive language. I observed the way I talked to him and noticed that he was tuning out after the first few words in a sentence. So, I began to shorten my sentences to no more than 3 words - SUBJECT, VERB, OBJECT. That made some difference, so I then shortened the sentence even more to VERB-OBJECT structures. HUGE jumps in receptive language resulted, with him getting 90% of the everything being said to him. Sometimes he responds via following the direction but sometimes he does not because he ends up spinning the object and does not want to part with it.



"He didn't really show his imagination until he hit around age 7. It likely was always there, just not in the way one would typically see it"



What I am seeing is a jump in his problem solving skills with respect to getting at items that he wants to spin. In the car, for example, he has learned to undo this arms from his seat belt to be able to grab at items in the seat next to him or in the pouch in the driver's seat. It is encouraging but scary at the same time because he may learn to remove his waist belts next (even though it is a newer car seat with tighter belts).



"And I'm not certain on how to describe it, but while he plays now, with an imagination, it's still atypical from kids his age. (He'll be 9 in December). I didn't notice the oddness of his playing as, to be honest, I remember being a lot like him at that age. I loved My Little Ponies, but when I was really little I didn't play with them as such, I just liked collecting them. (Makes me wonder about myself) "



My mother says that I never played with toys and neither did my siblings. She says that she eventually just gave them all away because we were more interested in make believe and such. My daughter never played with toys, either, but at age 8, she has the richest imagination in our family of over 51 cousins.



I just need the gift of hope, that there is light at the end of this dark, weary tunnel.

Anaquita - posted on 09/25/2012

If I told him to come to me, he would. Or get his shoes, give me his cup, etc. He did play with toys but... when I look at the way other kids played it wouldn't be stereotypical play. Not at that age. It was more, he liked cars, and would line them all up. He didn't really show his imagination until he hit around age 7. It likely was always there, just not in the way one would typically see it. And I'm not certain on how to describe it, but while he plays now, with an imagination, it's still atypical from kids his age. (He'll be 9 in December). I didn't notice the oddness of his playing as, to be honest, I remember being a lot like him at that age. I loved My Little Ponies, but when I was really little I didn't play with them as such, I just liked collecting them. (Makes me wonder about myself)



When he began talking he would still line up his cars, but then tell me, "this is a Subaru, this is a Ford F-150" etc. He also does this as we drive past cars. (And knows them better than I do). He also went from not talking to "Mommy, did you remember to bring your driver's license?" (A then roommate nearly had an aneurysm laughing. I swear.) As well as a conversation on the importance of polite driving.



These days he builds stuff out of legos. Like star trek star ships, ocean liners like the Britannic and Titanic (As well as the hitting the ice berg, and sinking scene) and Pirate's of the Caribbean stuff. Things he's been researching on the internet.

Gail - posted on 09/25/2012

Anaquita, bless your heart for reaching out to me. When you said that your son understood everything you said and responded in his own way even though he did not speak, do you mean that he responded via signs, actions etc ? Also, was he interested in playing with toys and such ?



My situation is that even though he seems to understand, he does not always respond appropriately to anyone other than us, his parents. With us, his response is via following our direction, especially if he is aware that a reinforcer is in the wings. Help !

Anaquita - posted on 09/25/2012

Each kid is different. This includes kids on the spectrum.



My son has Aspergers. He barely uttered a word at age 3, however it was clear he understood everything we said too him, and could respond accordingly, so it wasn't considered a true language delay. Just a lack of interest in talking. When he was 4 it was like the verbal flood gates opened, and words, even ones that should have been out of the reach of a 4 year old comprehension, came out. (Though his enunciation wasn't great yet. And he still someone over-enunciates now, as well as talks in a really loud monotone.) And now sometimes it's like he just won't stop talking unless he's asleep.



You may, or may not see something similar happen. But keep him in early intervention therapies. I say the fact he seems to understand 90% of the time IS a great sign.

Sharlene - posted on 09/23/2012

Hi Gail, Darls do you think he will cope you pulling him out of special Ed. And like I said if you want to chat privately message anytime. Im also on face book and part of a lot of special needs groups . take care xxx

Gail - posted on 09/23/2012

I want to thank all of you kind, wonderful, supportive women from the bottom of my heart. This has been a very rough week and a half, and I apologize for my late expression of gratitude.



My situation with the school did not work out. The district is very negative and the teacher is LAZY. BONE LAZY with an attitude to boot. I caught her in two lies and I don't think she is working with my son at all. So, I am pulling him out of the special ed preschool and sending him to a parent participation coop preschool where he will be around typical kids who are his age and developing normally. This would mean nulling and voiding his IEP and rejecting their offer of FAPE, so I am naturally very alarmed. It is not an easy decision to make but I feel it is for the best.



Can anyone help me with the pros and cons of my proposed action ? I am so worried and cannot sleep at all. If they were kind to my boy, it is one thing. But they are so negative about his abilities and I want to show them and shut them up.

Sophia - posted on 09/20/2012

JUST HOLD ON... THE SCHOOL WILL HELP.. YOU WILL LEARN TO COPE HONEY .. BUT IT TAKES TIME. JUST LEARN THAT ITS A TIME TO CRY AND A TIME TO LEARN AS MUCH ABOUT HOW TO HELP YOUR CHILD. YOU WILL BE JUST FIND ... ONE FOOT IN FRONT OF THE OTHER. GOD BLESS

Ash - posted on 09/20/2012

I am going though the same thing. I am not so upset about it at this point,but I still have my bad days. my son just turn 3 and is still not saying any words..but gave me some piece was knowing that God gave me my baby for a reason. As long as I have him in school and giving him all the help he can get and most of all,all the LOVE I can give thats what letting these days go by. I do know how you feel. I am here if you ever need to talk

Mildred - posted on 09/13/2012

You asked, "Did anyone else here or do you know of anyone who had a child who was not verbal at 3, but developed speech just fine later on ? "

Oh YES!! My son did not speak at all till he was 4. Right around his 4th birthday he started picking up a few things and a month after his BD, we had to do a list of words he used consistently. There were 116 and that included sounds that WE knew meant something but no stranger would have understood. By the time he was 4.5 his vocabulary was more like a typical 3 year old and now at 11 he uses a large vocabulary very appropriately. He still has strange things he says, odd repetitive sounds that fit in with the autism spectum, but his speech is NOT an issue! In fact, he now tells us stories of things he remembers that happened when he was 2 or 3, BEFORE he could talk, and he's right on with the memory! So hang in there, it can happen, and there may well come a time when, like us, your most frequently used phrase is "stop talking for a minute"! :)



Helping Families Work at Home

250-827-3884

www.Mom2Six.com

Suzanne - posted on 09/12/2012

Hi...I sooooo understand how you are feeling. I was there myself 9 years ago. My son had just been diagnosed with autism and maybe had one or two words at that point. We did the special public preschool thing, did speech and of privately, did play and horse riding therapy...everything we could think of. We used the TEACHH method a lot with him, and used PECS for him to start to communicate. By the time he was 4 he was speaking in sentences. By the time he reached 1st grade he was in regular ed! He just started middle school last week, and is now in a self contained classroom with other kids just like him. He is very happy there. They do academics...just scaled down a bit to his understanding. He reads at an almost 3rd grade level and he just started 6th grade. He will be 13 in December. He talks nonstop now. I won't lie and say life is perfect with him, it is a challenge...but he is also a great joy in my life, and he is a very happy boy and is loved by everyone who works with him. You will have challenges but he I very young right now...with therapies he will change a lot over time. Just remember, you are doing the best you can. Take care of you...you will need to be at your best in order to help him. Things will get better...you will have good and bad days...and as he gets older the good will outnumber the bad. Hang in there and know I am praying for you. Join some support groups...that helped me a lot to not feel so alone and to find resources. Take care!!-Suzanne

Summer - posted on 09/11/2012

You don't need to sit and wait or cope. You can find a DAN doctor or try calling a place like Generation Rescue that does some training for parents.



What kind of doctor are you setting? What tests have been done? What are you feeding him? Have you had a fecal yeast test don't? Have you tried the No Harm Diet?

Carol - posted on 09/11/2012

Hi Gail,

My oldest son will be 23the years old soon. 20 years ago there wasn't as many services as there are today. My son still doesn't say more than a few words and those are yes, no, sorry, etc. He is living in a wonderful facility with caring people that treat him very well. I spent years stressing over his future until someone gave me peace: Jesus Christ. Please read 1 Peter 5:10. God promises to restore us and make us perfect in His own time. Rely on Him every day to carry your burden. I can see now that my son was under His care. Bless you and stay strong in faith.

Jennifer - posted on 09/11/2012

Gail,

My son is almost 2 with dandy walker varient and partial charge syndrome. I know somewhat anout autism. He can say his version of mama and nite nite. Along with his what he was born with, he also has hypotonia which delays the walking, talking and crawling, etc. One mom said, "our children get there just later." I know how you feel, please remember God made him, Jesus died for him and has power over all! My son is just like yours: loves curious George, the movie cars, (anything lightening mcqueen) certain toys with lights and sound, and loves music! It will get better, it just takes a little longer. God blessed you with your son, He knows your the only one who can take care of him. My pediatrician reminds me of this ever once in awhile. Be blessed mama.

Gail - posted on 09/11/2012

Asih and Sharlene, thank you both so much for responding. Sharlene, you are a beacon of hope and encouragement to me. I am seriously considering homeschooling my boy with therapy from the insurance company on the side. I don't know how to chat using this website - please let me know how to do that ? I would love to talk privately with you, too.



-Gail

Sharlene - posted on 09/10/2012

@Gail. My son is 9 yrs old now and was in early intervention fro the age of 2 yrs old, He was interested in in light switches door knobs swinging door and his was his favorite programs was thomas the tank engine Jay jay the jet plane and god I cant remember was else lol. But today he loves watching the shows his sister watchers and plays mormal and does everything a 9 yr old does. Darling it does get better down the track and with all the intervention and other programs you can get him in the better he will be off. Like I said if you ever want to chat message me anytime . take care xxxx

Asih - posted on 09/09/2012

Hi Gail...don't know how to encourage..but I do have special kids too..

My 3y boys has development delay,doctors said cerebral palsy,coz not only cant speak,but he cant sit,cant walk..he want ti move his body but he cant do that

Its all because he has hipotyroid,he dint has tyroid gland

Since he was 6month he has physiotheraphy & speech teraphy,till now still do

We must keep positive thinkink of have our special kids,believe that GOD will listen to our prayer..

Keep fighting..

(Sorry,Icant speak english well)

Gail - posted on 09/09/2012

Thank you so much for your feedback, Sharlene. How old is your son now ?



I am so worried because my boy was in Early Intervention from age 20 months and seemed to show progress until age 26 months when he began to regress. Now, at age 3, he seems to have begun to understand simple words and memorized routines but still does not say one word. I am so worried about him. Was your son saying any words before 4 ?



Also, he does not show any interest in anything aside from listening to select pieces of music. Did your son do puzzles, etc, at age 3 ? HELP !!!

Sharlene - posted on 09/08/2012

Hi Gail. I have been down that road once and going through it now again, My eldest has autism spectrum and was non verbal until the age of 4 yrs old and he was in early intervention OT, Speech. He now attend a main stream school and in a autism unit and does not stop talking at all now lol. Then my 2.5 yr daughter has GDD, she shows 4 different syndromes and 9 of her specialist cant give me answers, she is non verbal she has a lot of medical issues and also in early intervention OT, speech, Physio, Feeding clinic and other services. There is hope and happiness at the end and keep always feeling positive and with a lot of intervention your little fellow wont stop talking and be as normal as my little fellow. If you ever want to chat message me anytime. Take care.xxxx