Okay we had his appointment to explain thing to us. The specialist was confusing me so much.On the phone she said that he was pass the line for autism. It was mild. So today with everyone there, she was saying the day of the testing Hobbes did show sign of Autism and that they would say that he had global devlopemental delays with red flags that show signs of Autism! :? :? :? That is not the way it was said on the phone! So after all was said and done, we were just offered the same programs that we have in place now except we are going to speak to someone from an Autisnm program. I, at the end, asked what did she mean on the phone about mild autism. she said well you can said it take way in the round about way. :shock: :roll: Doctors and their wording! So we didn't learn any thing new today. It was a little fruastrating!


Shannon

That is frustrating!!

. It was a little fruastrating!

Especially since it doesn't sound like they're not offering you much more assistance!

All she could say was"oh it looks like you have all the assistance you to help. They would let you know how things are going b/c it takes to long to see me. I was thinking Okay but you were the right telling us what is wrong. What can the others do to help? We can't get sppeech any sooner, Ot, or any thing! I am feeling a little mad now b/c I am thinking that if no real hard core starts soon then he can starts having more "signs " of the austism. They can see that we are working hard to get him the support and help, Then why can't they get with it and get us the help NOW? :x :x :x :x :mumum:


Shannon

Ooops, I meant to say they're NOT offering you much more assistance! (I've edited above.) Sorry, that must've been confusing.

Didn't worry Becky, I didn't read it right any way! :lol: It is fruastrating!


Shannon

I am sorry to hear that the appointment didnt give you any new information. I do agree about docs and their wording,and how fustrating it can be. I do hope the people from the autism group are helpful.

Melanie.

Thanks Melanie! I know , I thnk that Doctors need to forgive the medical talk and try normal english.


Shannon

I'm sorry the appt. wasn't more helpful! Will you be able to get in to see the autism people pretty soon? Maybe they can help with the push to get speech and OT.

Oh, Shannon. I am so sorry that it did not yeild some solid answers and a path for you and Hobbes! {{{hugs}}} I agree with Janette. See if you can get in to see the Autism people soon as they may be the ones to refer you to some help.

Do they think that a "mild" case does not need intervention? Maybe I am being a total cynic here, but it seems to me that no aspect of the medical profession wishes to deal with a problem from a proactive stance, preferring rather to wait until things become a crisis and then dealing with it from a reactive stance. Let's face it, we see this reactive stance all the time with GERD here on the board.

Was the meeting at all beneficial for your DH? I was hoping that he would receive the information needed.

When all else fails, keep calling them for advice and see if they push you up on the list faster.

Leigh

Hi, sorry I felt I had to jump in here, having a bit of a giggle along the way. Yes I too am frustrated with the medical system, especially when you approach your pediatrician stating that you suspect things not right with your younger three. As soon as I mentioned a syndrome or something he rolled his eyes, how patronising is that? Autism is something I suspect in my children, Hannah (6) was noted as having a delayed processing disorder through Child development (through the hospital, sorry am in New Zealand so all different here), Logan (10) shows distinct traits of Aspergers Syndrome. They each have speech issues, where their speech is simple, a less as possible is said, especially Marshall (3).

Seek as much help from outside influences. I am going through the kids school to get input from them, ammo to take back to the ped. I have also approached another organisation who have an early intervention programme, so Marshall is going to be assessed.

When you are faced with a special needs child, do not solely rely on the doctors, seek as much help and information from outside organisations, through the internet etc. There is a wealth of information there to help you and your child.

"We advocate because we believe.

We believe because we know there is a better "right" way.

We persevere because it's all we know......."

Great points Donna. I didn't realize you were dealing with developmental issues with your kids as well.

I have decided to call our services worker to see about getting the sevice worker who deals with Austism in to see us sooner b/c I am having so much trouble with him. He is getting more fraustrated.He has taken to hit me when he gets mad as well as himself. I know that we are in a early intevention pragram now for him with the Child developement but it is not working b/c they just gave suggestion. We triy them and they didn't work. The school here didn't help in that help. Your child would be label and treat differently not in the "good" way. Hear to be told they are doing what they can! :evil:


Shannon

WTG about calling the services worker, Shannon! Good for you! I hope that you're able to get the autism support person in soon! Please let us know what you find out!

Okay I talked to CDW instead. she explained things better to me. They are still treating Hobbes as Mildly austic. I am feeling bad and silly about geting him label but it kinda helps me to understand what is what. The woman from the Austism services will be the one to get hobbes intothe program that he needs so there are more services coming. She did say that we should go to one of the Austism seminars that they offer that it would help us. So she is going to call our services worker to call me to talk more. But i do see her on Friday so I will probably talk more than. So It is a little less fruastrating now tha ti undersatnd what is what with my son. :)

Shannon

Try not to feel bad or silly about getting a label for Hobbes, Shannon! Let me reassure you from the education standpoint that he'll be able to get services more easily both now and as he heads into the school system now that he has an official diagnosis. It's great to see that the process is already starting for Hobbes.

We were so worried at first over having Walker labelled with his speech and language delay as we did not want any stigmas for him to overcome at school. Once we saw that one teacher in particular was labelling him as ADHD we realized that he was going to be labelled anyway and it would be beneficial for him to be labelled correctly (he is not ADHD). We still do not know what has caused his delays, but he is now well into the IPRC process and we received word a few days ago that as a result of his psycho-educational assessment he qualifies and will attend a speech and language school for 1/2 days in September! This is great news and we would not have been able to do it without the "labelling". I am sure that he has processing problems and hope to one day know the reason why, but for now he does not show anything obvious.

To have a label for Hobbes will gain support for you and him. As Janette said, it will help you in the education system.

I agree that you can not leave it to the doctors for the sole source of support or information. I am hoping that your CDW will get that ball rolling for you. Kudos to you for being proactive!

Also, I am glad that you are finding it less frustrating knowing the diagnosis. Isn't it amazing how we can seemingly deal with anything once we know what it is we are dealing with! Hobbes has a wonderful advocate for himself with you!

Leigh

we received word a few days ago that as a result of his psycho-educational assessment he qualifies and will attend a speech and language school for 1/2 days in September!
That's awesome news, Leigh! Just curious...How soon was it that you started the IPRC process? And how soon with the Psych-Ed?

I made rumblings about it in November and was told he was FAR TOO YOUNG to have it done. In December I heard ADHD one too many times and pressed ahead with the request. In January we decided to have an independant speech and language test done and provided the results. About 2 weeks later the school did a speech and language test (different test, thankfully. Redundant notheless!). In March he had the psycho-educational behaviour assessment done and we received the results in April. We were told based on his assessment that he would qualify for the IPRC and it would be conducted on May 20th. Since he did meet criteria as a candidate for the speech and language school his IPRC is now to be held there and will be on June 8th.

It was thanks mainly to the resource teacher who pushed for the assessment for Walker. I had originally been told that it was unlikely testing would occur this year and we wanted things in place for grade 1. Since his speech delay is quite severe (his highest testing is about 13th percentile) it was obvious that we needed to intervene now to keep him mainstream if it was the best for him.

All in all, it was very frustrating and infuriating as we kept being hit with resistance. We plodded along regardless and look forward to the IPRC and IEP completion.

Leigh

My gosh, Leigh! I still can't believe that someone thought Walker has ADHD! Yikes! Having met him, that never would have crossed my mind. I'm glad you pushed for further testing!

We really did not think that he was even close to ADHD. Curran at times is a different story... :shock: , but I am sure that he is just really busy. Really, very, very, busy!

Walker does very well now in small groups whereas he did not before unless it was a familiar small group. When he is in a larger group with a lot of speech and language going on (like school or large family gatherings) he tends to disappear and come back from time to time to a familiar face to check in. It is really too much for him at times. He is so very social and the lack of language ability to carry on a conversation creates a lot of difficulty for him, especially at school.

A teacher can make all the difference in the world to a child. Tonight we had a note that he was not willing to try the rhymes and he received a sad face in his book for it. It angers me as she KNOWS he is delayed and has trouble with rhymes. I know that he tried and that is the main thing. Thankfully, he is not with her next year, but my middle son is.

Leigh

Leigh, that was mean of that teacher to do that to Walker. If she wnats that he has problems with rythmes and he tried then He Should get a happy face b/c he tried and that is all that should count. your poor son next year!


Shannon

That's too bad about Walker's teacher and the rhymes! How cruel of her! At least you know that he tried!

Back to the ADHD, I had someone suggest that about Evan today. From my personal experience teaching, I seriously doubt it. He can sit at one activity for a bit. It's just a short attention span at this point, but at least he has now mastered sitting and watching an entire Barney video. That doesn't sound like an ADHD kid to me.

hobbes can't even sit through a paper in a story! I thought that a child couldn't be diagnose this young for ADHA til they were older like 7. Is that right or wrong?


Shannon

Shannon,

Evan's the same. It's very rare when he'll sit through a short book. I wonder if it's all tied into the speech and gross motor delays. It took forever to learn to walk, so now we're still very busy exploring. And we've just learned to understand more speech, so we're still too busy processing everything. What do you think?

Sorry, I don't know at what age ADHD can be diagnosed, but I would think that it can be diagnosed before age 7.

I think that you are right about Evan not having that. I agree when they learn to do something that there is a big prcessing going on. It is like they didn't want to forget it again.

I was wondering about the age b/c that was what my cousin was told.


Shannon

I spoke with our special services worker today. We had a meeting, her and I, to fill out the sudsidry papers for the nursey school for Hobbes. She was able to get a meeting for us with the spec. services worker who deals with Austic children. We will meet with her here at home on May 30. So other about a week and half to go, to get some more help for Hobbes. :D The special services worker was also saying that they will get Hobbes to see an Austism specialist as well. So that will be good also. :) So I am feeling more relax about things. They are also going to start helping us with his pullups till he is potty trained. So that is a help as well since My hours have dropped again. :cry: Well, things are at least moving now with Hobbes!


Shannon

I know someone who had a child diagnosed with ADHD at the age of 4 and put on meds. I really would not want to medicate at that age and I wonder about diagnosis also as the age seems to dictate a fair amount of non-directed energy to me, so I really do not know. If a child will sit still for something that they are interested in then I would say no to ADHD, but that is just my opinion. Curran is always on the go and when he is interested in something and sitting he still usually has an arm or a leg going...

Evan does not strike me as ADHD either. His speech and language problems likely leave him in the same boat Walker was in at ages 2 to 3 and in his own world. Evan did stop moving and sit quietly, but he seemed to want to explore from what I could see. He was very busy and I can see your concerns for safety with him, Janette.

Wonderful news, Shannon! Amazingly fast for a visit as well! At least they see that Hobbes needs the help and are now going to provide it. I look forward to some positive posting after your meeting on the 30th.

Leigh

Shannon,

That's great news about the added help you'll be able to get for Hobbes and so soon, too! I'm also glad to hear that you're getting financial aid with the pull-ups. Easter Seals helps with "incontinence supplies" here in Ontario once kids reach 3 years. Sorry to hear you've lost some hours!

Leigh,

Where was Walker speech-wise when he turned 3? Was he at all similar to where Evan is at?

Janette, I been meaning to post and ask you how Evan's speech was coming? Is he still saying Momma?


Shannon

Shannon,

Evan is still saying Momma and so proud of himself when he does it too. He has also learned to say "Bub-buy". I hope he'll keep these words this time, but I really don't want to get my hopes up. How is Hobbes doing with his speech?

Glad to hear that Evan is still says Momma!

Nothing! He still doesn't say anything. He can echo one or two words but he doesn't said any thing on his own and the words he may have echo he would say again. It is heartbreaking! Hopefully now we can get speech therapy faster!

Shannon

Walker was really more quiet and in his own little world around the age of 17 months when the blue episodes started and did very little talking. He was using some words up until that point and it was like he had "forgotten" how to speak, chosing to vocalize with crying and pointing instead. It was so very frustrating as we were directed to tell him to "use his words" and it was clear he did not have any. We had to find a lot of patience during that time. He was somewhat like Evan in that he was in his own little world, but was still interactive unless we were in social situations or unfamiliar situations where he would try to go off by himself and get away from all the chatter. That is when autism and aspergers was being bantied about. He would have had similarities to Evan then.

When he was around 2, he started to use more vocalization and it was still very difficult to understand him. We knew him well enough that we could get about 30-50 % of what he wanted, but no one else really could. When he was assessed at the first words clinic at the age of 3, the pathologist said that she could not understand him at all and made an immediate referral to CHEO for speech and language delay. Since then he has used a lot of silly voices, strange noises at times, effortful speaking, and never seems to complete a sentence. I am sure that you noticed his speech when you met him since it is not a typical 5 year old speech. He has no sense of rhythm and rhymes are still very lost on him. I hope that answers your question, Janette.

Shannon, I am not so worried about Curran meeting up with this teacher as he is far from suffering with a speech and language delay. He will tell her in a hot second what he thinks of her as he is my brutally honest one. I am banking on her retiring within a month of meeting up with Curran. If she thought Walker was difficult, she has another thought coming with my next one! Walker is such an easy going child...

Leigh

Leigh,
That is the way Hobbes was. He was not saying much. Very active. He liked to watch and see how things were done. He had about 20 words that he would say. Like cup,pup, Ma, da, up, appleetc. This all stopped at 18 or as DH would say when Zoee came in to the picture. (HEstill thinks it is b/c we had Zoee that Hobbes is like this) Now it is like he can't seen to remmber the words that he just said back to you. He does the pointing or bringing it to you way of things but now that is getting harder to understand.

Janette, how does Evan communicate with you? Does he point and gesture or can he make out little sounds that you understand?

Leigh, I am glad that Curran is so outspoken. I can picture him telling the teacher when he thinks and it makes me :lol: . 8)

Shannon

Janette, how does Evan communicate with you? Does he point and gesture or can he make out little sounds that you understand?
I counted his words earlier today, and we're back up to 8, but only our names, school, hi, bub-bye, and so on. Evan communicates by whining, by pointing, and by signing the few signs that he has and hasn't forgotten. He'll also push me out of a chair or pull me over to what he wants. I've asked his ST for a communication board. I just haven't felt that leafing through a photo album of pictures of things that are important to him is quite where we need to go. He'd just be too frustrated with that. He's already frustrated enough.

The Child developement worker we had before wanted us to do a communication board but we had to find the images. It was way to hard to find and we didn't have alot of time. So we have not done it either. I am going to see if we can get one now for him that we didn't have to make ! :lol:

Shannon

I forgot to add in the few signs he knows, so counting oral words and signs, we're at about 13 or so right now.

Hobbes' speech therapist should have a computer programme available to make up all of the pictures. I don't doubt that you wouldn't have the time to find all of the necessary pictures...That's crazy!

Yeah, they think that I have Tons of time! :lol: I will ask the St when he finally gets one!



Shannon