Hello,

Parents, professionals, if that sounds familiar to you, please, please let me know.

RA is our 22 month old, boy. I know something is wrong. I don't know if there is a disorder or just delayed. Is anyone out there who can help me with an opinion, pleeeeeeease? The NHS waiting list is 9 month long, no SLT available in the area, all are fully booked.. I'm stuck! I can't stay another few month without knowing!

He hit all the milestones until 18 month old. He had four words at 15-18 month mama (mum in English), tata (dad in Eng), da (yes in Eng, when he was holding a phone) and chhh (yuck in Eng). After that he stopped saying those words. An occasional "chhh" every two weeks or so, copying me. His vocabulary is ZERO words. His hearing is fine, no fluid in middle ear. He doesn't babble almost at all, he squeaks everyday about 20 times, just for fun or maybe to hear my squeak in response.

Bad parts (red flags?):
- no words
- he's quiet
- doesn't like to stay to read the books like he used to. Vanishes after 2 minutes.
- doesn't point inside the house. he started to point two weeks ago at aircrafts and an occasional bird (we live near a major airport - and he points a lot)
- he can go across the field without going back to you, if he sees something interesting
- if someone else takes him nicely he doesn't protests
- doesn't interact with other kids, just parallel play. He started last week to try to take some other children toys and to push them gently if they are in the way (probably common behavior)
- bangs his head in one particular place, on his father door frame (seeking attention). His father taped a plastic bottle on the spot to prevent him from hurting himself (2 days ago), but he stills do it, on the bottle, harder. I've seen him yesterday banging his head on another spot in his room. I was with him. I yelled "no" at him and he stopped. His banging is mild. ---- What should I do about this? Ignore it as we did?
- doesn't cry when he falls mildly
- can entertain himself for hours
- he doesn't point or show you when you ask where's the X,Y animal or body parts
- doesn't show interest to build towers, just to knock them down
- he can start the "music" on several toys, and start them again (all of them) when they stop
- he doesn't wave bye-bye or hello. very rarely when you shake his hand
- doesn't shake his head for yes or no
- limited pretend play (today he started to play with a plastic frog, making it jump, tries to use his father tools)
- doesn't understand 2 steps commands
- doesn't copy what other peers do. (I tried a music class with him, two sessions. He didn't care. He was very interested on the Ipod and buttons.- yes he likes buttons a lot and tries to push them to see what happens)

Good parts:
- good motor skills:
* can put his shoes or wellington boots on (not necessary in correct feet)
* he can go up and down the stairs holding my hand
* he can climb a ladder without help
* he can feed himself with a fork or a spoon
* he can make puzzles (2 pieces puzzle, wooden puzzles with just the shape)
* he can run, stamp his feet
* he can drink water from a glass 50% of the time without becoming wet
* he can open and shut the doors
His motor skills improved
- he plays normally with his toys
- he stays with a book only if it has sounds or pull tabs
- today, for the first time, he showed me 5 animals in a row. he grabbed the magnets and put them in the book. Until yesterday he could show you only the cat and the nose
- no severe tantrums, just an occasional mild one
- he smiles when he sees you or when you do some silly stuff
- he laughs when tickled or you do something new and interesting
- he communicates well his needs - He uses me or my husband to do what he wants. He takes your hand and guides you where he wants to go or he pushes/turn you gently to guide you. he uses us to open the boxes, bags etc. when he can't do a puzzle or a game takes you hand to do it for him. (red flag?)
- decent eye contact
- he usually respond on his name. sometime you think he's deaf
- normal behavior with strangers - grabs my feet until he's confident enough to go further
- doesn't react badly at any kind of sound (vacuum cleaner, airplanes, music, voices etc)
- he hugs us, he doesn't kiss though
- he plays with water table and water toys for 1-2 hours, even more if you join him and make interesting stuff
- likes to play with him
- follows few simple commands:
* no
* down
* put your changing mat back
* let's wash your hands (he might grab the soap, but he doesn't do the motion to wash his hands)
* lets open/shut the lights
* let's go to the swing
* come to mommy/daddy
* give me your hand, (with my hand motion)
.... that's about it. He usually understands what happens next: going outside after he has his shoes, going on a bike ride when he has his helmet on, going to play with X/Y toy when I hold it in my hand
- he learns the phonetic alphabet from his toy teddy bear (red flag?)
- he can play on his laptop toy for hours (red frag?)
- he protests when you take away his toy
- he tries find how a new toy works
- he scribbles, he can hold a brush


Background and other info:
Bilingual environment. We speak one language at home and English outside. We both work from home. All the toys are in English. His father was a late talker - after he was 2 and a half. Same "communication" style with grabbing fingers, pushing his parents to get what he needed and no words. I would say the genes are going one generation further.
Nothing to report about me.

RA goes to play groups twice a week. He didn't have any major health problem, just the usual "stuff". We started a class for his age group - I don't know how to call it - we are 6 parents with toddlers and a lady sings, plays some simple games to make them concentrate and interact. On his first session we kept running after the little escaper, outside to bring him back. On the second session just one attempt. He gave eye contact on the second part of the lesson.
He is going to the nursery in late September, 2 hours daily.
I think I covered almost everything. If you have any questions just ask.
He uses his dummy just to go to sleep. I'm afraid to take it out, now, when I don't know where I'm standing.
If I'll get interest/response on the topic I promise I'll keep you informed.

P.S. Sorry for my English, I tried my best.

Hi Kitkat,

Yes, I live in UK, S-W from you. I've red your case few days ago. In my case, my major concern is his regression in speech and the head banging.

mama, tata, da sounds familiar? What about my nickname? Then you'll know from where I come from :).

In the last 2 weeks I've started to reed about RA "condition". I was socked to see how many are in the same situation or much worse - 1 out of 6 in UK. To many things to read, I can't decide what's relevant or not. He seems to be at the border between PDD-NOS and delayed. I don't know what I'm dealing with, yet. I'm angry with my self that I didn't start even early to find help for him. I was listening stories "oooh, don't worry, he's going to talk, you know about X,Y,Z who stated at 3, yada yada. RA is going to be fine" or my husband "he is like me". I don't mind that at all :), to have another "walking Wikipedia" at home.

I've read 1/4 of this forum and I'm going to read more. I've seen many tips; about flashcards, upside-down pyramid ( I realized I kind of used it by reflex), 1-2-1 session with your toddler etc. In the last 2 weeks, I started to focus more on his play. I see some progress. Like yesterday he was able to show me 5 animals in a row. the days before he showed me one, the cat. He doesn't point, he just grabs the cat etc (magnet) and put it in the book. He started to make to frog to jump, after show him few times. I don't know if it's one time only or not. The key in my case is repetition, repetition, repetition, repetition -> infinite repetition to make him learn new things. Sometimes I become very frustrated because he doesn't stay to be taught. I have to find different strategies, like the book with magnets instead a "normal" one.

Kitkat, do you use Sure Start? I find it very useful for playgroups and different activities.

I also started to use some signs (from a DVD), no results yet and he doesn't seems to be interested. It's sooo obvious what he wants, almost all the time.

Hi vulpitza,

Your English is excellent. And your lists of your observations are even more excellent! Keep these up with periodic dated entries so you can follow your son's changes over time.

Your son is at an excellent age for you to be taking this close look. I agree with you that there is reason to be concerned about regression in word use and in some behaviors such as not sitting to listen to you talk about books like he used to. For as many positives you note about your son's development, there are many concerns.

Question--how is it you are so sure about your son's hearing? Was it tested recently by a clinical audiologist? Was impedance testing done to be sure about middle ear function?

Your small group sounds good as well as all of your one-on-one efforts with your son. When you say you know exactly what he wants, do you then put his request into words and then work down through the "pyramid" reducing from a simple sentence to a phrase, to a combination of two words, to a single word, then down to a sound? Are you sure you are making statements instead of asking him questions? Be on the alert for using rising intonation which turns a statement into a question. Are you pausing to give him a chance to imitate you if he chooses to?

I hope you will have the opportunity to have your son evaluated in the next half-year so you can get more information from people who get to actually observe what your son is able to do and what is difficult for him.

---

Mary Lou B. Johnson, M.S.,CCC-SLP
http://www.helpyourchildspeak.com

This is a lot of progress in just a few days. Great! Keep promoting, noticing, and writing down his changes. I like to recommend that parents do very little question-asking at this language stage. Aim for at least 80% statements. Most parents of young children seem to ask questions 80% of the time. It sounds like you are very comfortable making statement comments. Do that as much as possible.

I'll watch for your updates!

---

Mary Lou B. Johnson, M.S.,CCC-SLP
http://www.helpyourchildspeak.com

Ok, I decided... this is going to be a kind of a journal. My journey to speech. What is working for me - I'm going to make notes at the end of the posts.

Makro, how can I not worry?! I don't know his story yet, it wasn't written. If I knew I wouldn't be here asking. Nobody(including his SLT) knows if he is going to speak, when or how.

Mary Lou, 'elp

We had his assessment:
- single channel attention
- poor listening skills
- some intention to communicate with us by looking at us, squealing and pulling and pushing us around
- comprehension and expression "early stage"
This is no news for us! She said that she doesn't think that he is on the spectrum. She made the assessment based on what we wrote, she had just 5 more question and that was it. She didn't try to play with him, just observed.

She made a video of us playing with him. At the first session she showed us the video and asked us if he is leading, if we are sitting where he can see us, if we are giving him time to talk, if we are commenting on what he is doing, praising etc. I didn't see the point for doing this with one of us at a time, in a separate room, while RA was playing with the other parent in the other room. She didn't try for a second to interact with him. Se said he doesn't understand English ... but ... he doesn't understand our language either. Is this normal? I don't like the idea of paying for someone to tell me to do the "special time" that I'm already doing ... I don't like that I have to go with her in another room and discuss something that I already know or can be said in five minutes, tops.
She said that next time we are going to do another video... that means she is going to stay in her chair, make the video with each of us and discuss it next time..why can't she observe by playing with him and/or correcting us at the same time? Does it sounds OK what she is doing? I'm very angry and I have no idea what to do...is it too early to judge? She said that she doesn't know if or when he is going to talk!!
The only useful thing that she said is that we are talking too fast and that she doesn't think he is autistic.


RA made great progress, but now he is almost quiet again. He understands and points sometimes when asked: tiger, elephant, crocodile, car, train. He points less but I can see that he understands a little bit more.
I think he started to understand "shoes". Today when I said shoes he went to pick them up.
How can I make him produce more sounds? how can I make him repeat them?


Bad part: he started to push buttons kind of obsessively. He doesn't wait for the song to stat properly and pushes over and over again, for 2-3 minutes :(.

He surprised me today. We've made a train track and I've brought some train cars and we started playing. After a short time he went next to the closet and waited for me. He raised his arms for me to pick him up. We opened the door and he started rummaging. He was looking for his battery operated train engine that I keep it in there. You know how snail eyes are? Like mine when I realized what he was after. he hadn't played with it in the last 2 weeks. He found it and we started playing again. His father replaced me and played with him. He told me that he did more things. Like he replaced a piece of the track with a switch (points?) and put the extra piece attached to the switch. I am still smiling :)

My friend came to visit a few days ago and he went to sit on her lap to play with her necklace. He sat on her lap for her to sing a few nursery rhymes as well. It's for the first time when he goes to someone else to interact. Her son was jealous, but she got both of them on her lap. The difference in age between the kids is 10 days.

RA started to build towers, from big bricks mega blocks, stacking cups, train cars. This is new thing. Last week he was still knocking them down. And yes, he builds and knocks then down, as expected. His father tells me that he also built an arch, with his help (two small towers and a lintel).

RA started to attend a weekly "class" for kids of his age. A lady plays simple games with them. We had 4 sessions:
1. he kept running out all the time
2. only one attempt to escape. in the second part he gave eye contact to the "teacher" and tried to play (one of the games was "ready, steady, GO", which we also played at home later)
3. he was more receptive and played "ready, steady, GO (throw the object)"
4. improved even more. tried to roll the ball and played "ready, steady, go"

NOTE for parents:
Ready, steady, GO! - a simple game, that I never thought RA was going to play, with his short attention span.
Take an object (we play with socks, yes, clean ones :)) squeeze it in your fist, and say, readyyyyyyyy, steadyyyyy...pause...GO! and throw the sock on the floor. Make different pauses, different lengths of time, for the little ones to learn to wait, concentrate and interact with you. Be shore that you have eye contact, make funny faces, make it fun.

Another game that RA enjoyed, and that we later played at home with some success, involves passing a beach ball from one child to the other, at the direction of the "teacher". At home, I just passed a small beach ball with my husband, and after a few passes involved RA too.

An interesting piece of advice I found on this forum, and that works very well, was to let the child lead the play, and start to participate only gradually, adding more elements. For instance, let him play with blocks for a while, and then stack a few of them, and wait for him to do something, then maybe add one more block to his stack, and so on.

Hi KitKat,

The assessment was with a SLT. I've had a referral for a pediatrician (just a normal one, not a specialist, I guess) from the audiologist. The appointment letter should be here in the next 2 weeks. I'll ask for more investigations. I'll not have rest until I'll have my answer. My husband is making fun of me because I started to talk on the phone because of this situation (I don't like making phone calls because sometimes they don't understand what I'm saying) :)). The things that you do for your child, ntz ntz :))

KitKat, after how long did your son made some progress? When should I see something? Does your SLT play with him?
My SLT made us to do the "special time" for 5 minutes every day and write down the sounds that he makes. The thing is that I'm already doing it as many times as I can and he didn't improve. I don't agree with her method (i am aware that I don't know a thing about SL therapy).. and is no one else available in the area AND she is far away (1 hour drive each way). I will talk to her to see what happens.

Can anyone describe his session with his SLT? Are you happy with her?