View Full Version : Walker's story for speech delay


Leigh
04-16-2005, 12:13 AM
I have no idea whether or not my eldest son was a refluxer. If he was, he was a silent one despite being an excessive drooler (like the creature out of Alien 3) and some intermittant projectiling of foods with no illness present. He had eczema pretty bad on his face and reacted to fruit juices. He was so pale for the longest time, but never tested for anemia. He started down the asthma path, but it seemed to get better when he was around a year. He was a championship eater and was quite a porker until a bout of RSV where he lost 15% of his body weight and it took us over 8 months to gain it back. When I look back, I remember him prefering to sleep on his belly like my wee one with his knees up underneath him. He is now about 60th percentile or so for size, no big difference between him and his classmates.

Walker was born on time on August 13th (it was a Friday!), 1999. He was 7 lbs, 11 oz and perfect. I decided to try to breastfeed and gave it a go. Within one week he was dropping too much weight and we started in for the daily weigh ins. I did everything I could to get my milk going (it came in 4 days after his birth and I never leaked and never had the let down feeling). I was at the point where I was having warm baths with him trying to latch on while drinking a beer (I hate beer), surounded by candles and relaxation music. Suffice to say, despite several clinics, I had no milk and gave up after he dropped too much weight and was sleeping too much and pooping a dime poop every 3 days. He gained a pound a week on formula and was great. Note: I do not advocate NOT breastfeeding. It did not work with my first, but I had enough milk to feed a small country with my second child. What a difference!)

Developmentally, he walked at 14 months old despite cruising from the age of 10 months. He did the normal baby babble and speech was developing normally. We had a French and English caregiver and she spoke French to Walker and he picked it up, using the occassional French word at home. Nothing was out of the ordinary. All other milestones were normal.

When he turned 18 months old he started to have "blue episodes". He would literally stop, his lips would turn blue, and he would drop to the floor. We ended up at CHEO to have him checked out. He had 2 ultrasounds of his heart done and the only thing they found was an extra little fistula that draws a minute amount of blood from his heart. It would not cause his problem, so the cardiologist said that it had to be some virus (we had a bout of viruses that month hit the family) that affected his heart. In other words, he did not know. His pulse oxygen was around 88% to 92% during this time. It did clear after about 7 months and has never happened again. It was during this period that he stopped talking. We really did not notice right away as we were worried about his heart.

As time progressed I questioned our ped about his lack of speech. As he was my first child I was diligent about reading the baby books and the milestones. He was reaching no speech milestones. I was told that boys develop speech slower than girls. Eventually it was realized that something was wrong and he was sent for a hearing test. Normal. They sent me to have his eyes checked. What the heck that has to do with his speech I will never know, but it was normal. Then another hearing test about 6 months later which was normal.

In March of the year he was to start school in September, I was frantic as he could not be understood by anyone. He would point to things and seemed to have his own language. We tried to gently direct him to use the correct words ie:"milk, please", but we had limited success.

By this point our second son had arrived and was speaking clearer than our oldest. I took Walker to a "First Words" screening clinic and the speech pathologist who screen Walker said that she could not understand anything Walker was saying and that he was severely delayed. She referred us immediately to CHEO. It took about 2 months and we started the speech and language sessions there. We learned that despite the common thought that lack of language = intelligence problems that it was not the case for most children who are speech and languaged delayed. He went through the sessions and they reccommended that we start him in
JK. I was terrified, but we tried it and were ready to pull him out if his frustration level was too high. He is an extremely social child and loved school. We had our ups and downs, but he was readily accepted.

Our JK teacher was a Saint. She was soooo patient. We started private speech therapy for him (egad, the cost!) in addition to the CHEO program and started to notice results. In the early times we had such a problem with frustration and with disciplining him. How do you correct a child who likely does not understand what he did wrong? We just kept working at it and the frustration started to go away, but it was rough for awhile. The pathologist stated that being in a room with more than a few people was like us going to a Japanese movie for 2 hours and having no subtitles, but having the expectation of understanding of the content and meaning of the movie.

We completed the CHEO program and have done research to help him at home. He is now in SK and we have had quite a fight at times as he had a change of schools. One teacher who has over 25 years of experience actually told me that not only did she feel that Walker was attention deficit hyperactive disorder, but she mentioned that there were "intelligence issues" as well. I nearly drove over to the school right then. No matter how much I tried to educate her on how to deal with him for communication (ie: eye contact, shorter sentences, etc) she did not wish to hear it. Thankfully, his other teacher seemed sympathetic.

We decided to have him go through the IPRC process. Since he was being labelled we figured that it might as well be the correct label. We had heard all about Autism, Aspergers, ADHD, etc. and found a few comparisons, but not enough to convice us that he had a problem. We started the process in December and it should be completed in May for implementation for his IEP in September.

We had him privately assessed for speech and language, then the school decided to do it. Then he underwent a psyco-behaviour assessment by a psychologist and we received the results last week. Walker is severly delayed still for speech and language, but in terms of his non verbal skills he is gifted. Only 5.5% of the population have such a large difference between verbal and non verbal skills. No, we do not know what the cause is as yet. He could be re-tested in Grade 2 or 4, but at present he has no obvious developmental problems or conditions.

It has been an uphill fight from day one. We had our parental twitches that something was wrong and pursued it despite being told that boys develop speech slower than girls and my favourite - that because he was so gifted with co-ordination for ball games (basketball, soccer, etc) that his speech and language would suffer as he developed these skills!

To this day, he is roughly around the 8th percentile or so for many things related to speech and 92nd percentile for non verbal. It is somewhat difficult for people to understand him until they listen to him for awhile. His sentence structure is virtually non-existant, he dislikes singing, does not like to clap tempo, finds things speech and language related to be hard. The interesting thing about his reading is that the psychologist thinks that he is memorizing language. She is right. He knows how to spell the word "that" and to identify it. However, if you ask him if "house" or "bat" rhymes with "that" he cannot tell you. If you take away the "th" and put in the "b" and ask him to pronounce the word he can not. Once you tell him what the word is, he memorizes it.

He loves to make silly noises. He dislikes his own voice and seems to use the silly noises to communicate instead. I worry about a self-esteem issue as other kids (kids can be cruel!) sometimes call him names. We just keep re-inforcing how special and wonderful he is and try some role playing now for social situations for him. He is fantastic one on one, but in a group he cannot keep up with the language and becomes lost.

Boy, I just realized that I could write forever about this. I will stop for now and hope that this is somewhat coherent. If you have any questions, feel free to ask as we have a lot of experience in this aspect.

Leigh :D

ElisMom
04-16-2005, 12:43 AM
Thanks for sharing that, I know some people on here are concerned about speech delays and have lots of questions, it sounds like you will have a lot of useful wisdom in this area. :D

Leigh
04-16-2005, 01:38 AM
Thanks, Elismom.

I really can not say that he was a gerdling for if he was it was a lot less obvious than my other two. What I do know is the speech and language delay and all the labelling that people feel they must do, particularly by the time children are in school.

Sorry if I ran on too much with the story. We have had so much happen with it and there is so much to say about it. I know how Zapsmom feels as we were there with Walker as they suspected autism and aspergers with him. I was so focused analyzing what he was doing and why that I forgot that sometimes "because" is actually a good enough answer, though seemingly unsatifying. For instance, Walker would during the play observation take about 50 hotwheels cars and line them up end to end perfectly by colour and type. He would put all the red cars end to end, then the blue ones end to end, etc. There would be no space and it would be ramrod straight. He had everything compartmentalized. Nothing wrong with that, correct? No. Apparently his fetish with lining things up was a symptom of autism when coupled with his speech and language delay. Now, with his most recent testing I find that he is gifted with non-verbal and spatial considerations. Essentially, he can build amazing things out of lego that look like spaceships, dinos, etc., but he can not tell you how he feels about it.

Leigh 8)

Janette
04-16-2005, 11:45 AM
It's really hard to have speech delays and no diagnosis, especially as you head towards the school years. How strange that Walker just stopped speaking. There has to be some kind of answer for that! I don't agree with your doctor that boy's develop the speach skills later. Brandon was speaking in full sentences when he turned 2 and he knew his colours. At one point, I counted 17 words in a grammatically correct sentence! On the other hand, a little girl we know who is 6 weeks younger than him, didn't speak until she was 4--a genetic family thing, supposedly.

That "experienced" SK teacher you mentioned sounds just awful! Too bad she wasn't willing to learn from you about how to teach speech!

If it's any consolation, we've had an uphill fight for Evan since day one, too. We knew that something was wrong, but it took a year to convince any of the so-called professionals out there. I finally took him to the local children's rehab. centre for help!

Anyway, I'm looking forward to the mutual support through all of these speech-related issues.

ElisMom
04-16-2005, 01:21 PM
I do think boys develop speech later on the average. My first son Sabin was a talker and talked very early and talked a lot but I dont think that is the norm. On average, girls do talk sooner. That is just my opinion from development classes and teaching in sunday school and being around children in general so its nothing official :D Just me.

zapsmom
04-16-2005, 01:54 PM
Leigh, Thank you for Walker's story. I am having a hard time this weekend with the test of Autism for Hobbes coming up on Monday. we too fell that there was something wrong with Hobbes in the speech department. Everything else he was amazing at! He walked at 101/2 months, running on his 1 birthday. He would love to watch things being put together. At 16 months, he watched me up my vacuum together and he got down and tried to screw the screws back in to place. I thought "WOW, what 16 month old baby can do that?" All a long I was noticing that he was not saying Mamam, Dada , hi, bye.He did say MAMA, DADA,for a short time till 18 months then he stopped. He would sometimes echo words like cup, pup, ball but again stopped at 18 months.That is when the head banging started shortly after and hitting himself several months after that. I feels that somehow I missed sometimes because I was to emotionally outof it to see what was happens or to help him maybe develope his langauge because Iw as pregnant with Zoee, my mom died when he was 18 months, we were buying our house. He is great at baby babble which are not real words, just noises. He likes to minic movies by the sound like in Lilo and stich, the prof. evil Or whatever his name is :) torns up the paper and makes the GRRR sound,Hobbes minics that. They are telling me that he has sensory problem like can be like autism. All I know is I just want to be able to hear my son say, Mommy I Love you! I can't picture him even doing that. I am worried for him as well b/c kids can be MEAN! I know that it does mean that he is autisic but I know then there is something else that is going on with him. Sorry I just realized that I am rambling again.
Thank you Leigh again for Walker's story!

Shannon(zapsmom)

Janette
04-16-2005, 04:41 PM
All I know is I just want to be able to hear my son say, Mommy I Love you! I can't picture him even doing that. I am worried for him as well b/c kids can be MEAN!
(((HUGS!))) Shannon! It is hard waiting for those words when all of the other kids his age are talking. It's even harder when those words that he had are gone again. I've been there. I too worry about how mean kids can be. Part of it is ignorance...They just haven't been taught or don't understand. I work hard to make sure that people that Evan's around know what's going on, so that it hopefully won't become an issue, but I know that I'll be dealing with it all too soon.

zapsmom
04-16-2005, 04:58 PM
It's even harder when those words that he had are gone again. I've been there. I too worry about how mean kids can be. Part of it is ignorance...They just haven't been taught or don't understand. I work hard to make sure that people that Evan's around know what's going on, so that it hopefully won't become an issue, but I know that I'll be dealing with it all too soon.[/quote]

((((HUGS)))to you as well, Janette. I know how mean kids can be b/c I was picked on when growing up. I was a slower learner when I was little and the kids picked on me. I know that part of all of it is ignorance.....I think about the kids who teased me and think now they have kids who are going to tease a kid like Hobbes. I also hard work to make sure others who are going to be around Hobbes know what he is like and that he can not respond to them but it has at times just fallen on deaf ears. I am very concern about the Fall when I am going to try to put him in daycare for two afternoon /week for the socialization but I have to be postive that the kids will be friendly to him.

Shannon

Janette
04-16-2005, 08:42 PM
I was a picked on kid too, so as a teacher I always had a special spot in my heart for those kids...and not much patience for the bullies! I was picked on for different reasons. At 7 1/2 years, I was the new girl in town...the new girl with a learning disabled ADHD brother, the new girl who was taller than the others and who developed sooner than the others. Yes, kids can be terribly mean!!! :cry: My mom made a huge difference in my brother's life by educating the neighbour kids and by asking them to join M.'s team of doctors, nurses, and speech therapists.

From personal experience, I wouldn't worry about the daycare situation in the fall. (Incidentally, we're headed the same way with Evan, b/c he'll get better services that way.) With good day care teachers, you'll be surprised at how the other kids will take him under their wing. If the teachers deal with it well, every kid in that class will want to be Hobbes' special friend and to help him. Have you already chosen a daycare for him? We're still in the looking process, and waiting to see how much of it will be funded.

Leigh
04-16-2005, 09:39 PM
A good teacher can make all the difference to a child. Our teacher for JK was just simply the best and made a rough situation work. We actually found that since all the children were getting their bearings in JK it was not bad for Walker at all and he had many friends. SK is proving to be more difficult as Walker is very social but is unable to communicate the same as the others so he tends to act like a clown, make silly noises, etc. for the attention but has no true friend there yet. It has been a lot of work in the self-esteem department to get him to realize that his voice is wonderful (he hates his voice and hates to sing) and that everyone would love to hear "Walker's voice". I went through a lot of rough times in school, too, so that makes me sensitive to Walker as it makes you sensitive to your children. That is actually half the battle as it is just as important sometimes to empathize as opposed to sympathize with your child and you can anticipate problems and spot them quickly and react. Make sure you have a teacher who is on board with you for the speech and language problems. It is next to impossible to work against one.

The teacher that Walker has for English was just awful to deal with, so I ended up dealing more with his other teacher who seemed to be more sympathetic. I recently found out why she is so good with him as she has a son who is in JK and is exactly going through what we did. It happens to teachers, too! The English teacher was sitting next to me when we got the results of Walker's assessment and seemed shocked by how highly he tested for non-verbal. THen she stated that she had felt that Walker was not acheiving to his full potential. Hmm. Anyway, it has taken a LOT of work, but everyone is on board now it seems and Walker is doing well.

As far as girls developing speech earlier, I do agree based on observation and readings. However, boys should be developing progressively as well. If your child is not progressing for being understood or suddenly stops language it is time to be tested. I had two doctors tell me that because he was developing the skills of basketball, computers, and lego that his speech was suffering. Mule feathers. He had seemingly developed properly prior to this and actually backslided with no improvement for the longest time. THAT is the problem. A good thing to remember is that the parental tingles of whether or not something is wrong coupled with an observation or two from a trusted friend is worth more than anything you could hope for from an overworked ped who really does not deal with whether or not your kid talks.

Shannon, it will be fine. No matter what the test results are you will find the strength and support to get through it. I do not know all of your sons's symptoms, but Walker had many. They were so concerned about his lack of communication, his funny noises, his withdrawing from some social situations, his frustration, his lack of eye contact (still has to this day), his needing to arrange things (like the cars), need for repitition, his funny movements, etc. all brought them to autism. So far no test has determined anything other than that of speech and language delay from unkown causes. I will have him re-tested in the future, but I know that it is not autism. He is an absolutely delightful and helpful boy and he has some quirks. I do not worry about them or what they might mean at present as nothing is glaring anymore. Funny how he still does have some of the symptoms, but he is not autistic and is 5. No matter what the tests would have yeilded I knew that we would have found a way to deal with it somehow, but it did not make it easy to wait and wonder. I am comfortable now with all the speech and language with Walker as I have been in the system long enough to be confident. As I am super new to the GERD situation and was told of the possibility of CF for my youngest I am likely just as nervous over that as I was in the begining for Walker and his speech. Educate yourself and go with your gut. My kid had many symptoms and did not test for it, so nothing is a foregone conclusion yet. :) Perhaps if you tell me what his symptoms are we can compare.

I would not sweat the daycare, especially if it is a small one. Walker made solid friends at daycare and felt very secure. An understanding caregiver can make a world of difference as well, but as the groups are so much smaller than at school it makes the kids a bit less likely to bully from what I have seen. He will likely do well being introduced to small and controlled familiar social settings like daycare as a dry run to attending school. School definately needs some prep work for these kids.

Consider yourself hugged and let us know how it goes on Monday

Leigh

Janette
04-16-2005, 10:26 PM
You're right, Leigh! A good teacher certainly DOES make all the difference. Even though I resented being bullied at the time (and who wouldn't!?!), it has made me a better and stronger person, someone who is able to empathize with the pain of others going through similar situations.

Don't worry about the CF test, Leigh. It's just a formality for many kids with GERD and done b/c of the phlegm issues.

I also agree that school needs some prep work for these kids. Unfortunately, in today's system the kids without a "label" don't get as much support as early as those that are "labelled" earlier on. That's one of my main reasons for needing to put Evan into daycare for the fall. Now that he's 3, he's being discharged by a number of the agencies that where involved with him. If we don't have him in daycare this last pre-school year, he will have less support as we head into the school system for the following fall. I'm really torn on that. On the one hand, I'm a SAHM so that I can provide the extra one-on-one time with him, but on the other hand I need a break from it all, he needs to have more opportunities to play with kids his age, and he needs the next agency involved as he heads into the school system.

Leigh
04-16-2005, 11:24 PM
I'm not so worried about the CF test thanks to all my "home testing" of the kids :lol: It was just so frightening to hear it as a possibility prior to meeting up with the allergist who suspects GERD. I was just trying to console Shannon over her concerns of autism. We were just as worried over that at the time due to all the indicators he had. Sometimes I think that they really can not determine much until the child is older as Walker may indeed have a developmental delay if we do not see his verbal and non verbal skills come closer together in time, but right now he is fine.

It is funny that we had so much resistance to having him IPRC'd at this time as they felt that he was too young and it was too early. Our arguement was that he was being labelled, so let's label him correctly and provide him with the help he requires to succeed. This will not help him so much this year as the process still continues. It is May 20th when we have our IPRC meeting and from that they draw up his ILP for next year. Lots of fun, considering we started all this in December.

I am sorry to hear that your programs halt when he is 3. CHEO first words runs until your child is 4 then you have CCAC which is Community Care Access Centre. Trust me, it is fairly useless compared to CHEO. A speech pathologist visits Walker every Monday to work on speech alone. Considering his massive language deficit he really needs help there instead. Not much sense in helping him to pronounce "Cow" instead of "Tcow" when he can not form a complete coherent sentence. Oh, well. They are looking into putting Walker into a speech and language program at another school for 1/2 days next year and I should know if he is accepted by end of May.

It must be so difficult for you to think about putting Evan in daycare, but he will likely do wonderfully well once adjusted. Daycare, particularly small ones provide a great source of socialization for them and they learn to interact on a small scale. School is hard, but JK again was good for me as all kids are off balance with it and have not developed the confidence and sense of cliques really at that point. SK has been different, but we also had to move schools. Part of the difficulty for Walker I am sure is how he is perceived by his English teacher as that would spill over to the other children as well. Just wait until she gets Curran next year for JK. I am betting that she will quit for sure as he is super busy, easily bored, rather forthright with his opinions. stubborn, light years ahead for speech and language, bright, and never stops talking. He is such a great kid, but I am betting he will be labelled attention deficit within 5 minutes! :lol:

A break would be healthy for you, too. You are never going to have a full "break" from it as we do things now without even thinking about it to help Walker. It is exhausting as a parent as we really want to see the kids improve and work hard to see the results in them. Agencies are happy if they learn to say "sheep" instead of "sheeps" in 8 weeks.

Are the agencies telling you that if he is not in daycare that you will have less programming available? Seems backwards, doesn't it? Why can it not be the same in either case. I know it is scary to move from one program to another as we like what we know and feel comfortable with. CHEO was great and CCAC leaves me lukewarm. This program in the fall could be terrific, so I hope that he is accepted. Sometimes we have to move up and down to get where we want to be. My wish is that we get there quickly and without any compromise to our children.

Leigh

zapsmom
04-17-2005, 02:20 AM
Leigh,
Thanks for the trying to console. It did help abit! :D Hobbes is hard to explain. He was a very socialiable kid at one point and now he is not. He doesn't like change of an routine and easy to upset to ythe point thathe will bang his head and punch himself in hte head as well. He has gone from a happy baby to a very frustrated little boy. He has a strong need to touch skin to skin all the time. He likes to be in water as well. He is very reptive in things like watching a movie to one point then stopping it and watching it again to that point then the pattern starts again. He has a problem with chewing on everything from his books to the window edge in his room. He speeaks only one word and that is UP butthat is more of an echoing word. These are some of the things that Hobbes does. I am going with my Mommy's gut and I do feel like something is wrong. I do think that Hobbes has a mild form of autism but we will have to see.
The daycare thing ....Janette, I have just started to call around. Day care is hard to get here. The CDW is not recommending that we start Hobbes in daycare everything or the two days/week that we do not full days. It would be too hard on him.Here is an example of Hobbes adn how changing or getting upset is hard on him. I had to get his hair cut yesterday by a proffessional hairdress b/c his hair was matting. The experience upset him so bad that the rest of the day he had a hard time being around anyone, he cried alot and today he is very sad looking and easy to upset. It would probablt take til tomorrow to get him relax again. So I didn't want to upset him too much with daycare. I called one place and they basically told me that speech delays were not a special need and I would not get funding. Well, we just got a Special services worker(social worker) who put in the paper work for funding for Hobbes to have a worker work just with him when he is there. It really put a negative spin on the daycare experience. I too am looking for a bit of break and do feel like I need one. Now withthat person's attitude, I thought it would not be a good experience for Hobbes and I didn't want to put him there it but the SW talked me through it. So next week the search continues. It is hard to find Daycare here. I am also applying for sudsadry(sp) which can take time. Now that we have a SW for the kids especially Hobbes, they will be with us till he is 18. So any help we need will always be there. I know for that we are lucky.

Shannon

Leigh
04-17-2005, 10:59 AM
Shannon, I am so sorry that you are going through all this. It is so difficult to deal with and answers do not come easy.

The routine thing is something that Walker really needed as well. Now, he is better with a change of routine than my 3 year old is. I was told that children with the speech and language delay have a level of comfort with routine and have a real need to know what is going on. A change in routine would result in frustration, some hitting, a total limp and soggy body on the floor, and major tears, but never the head banging. Our 3 year old used to head bang when he did not get his way. It was horrifying to witness as I thought for sure he would brain himself into a jellyfish at times. It stopped when we did not give him the attention during it. I mean within a few days of ignoring it, he stopped. Not all children respond to that. One of my friends had a child who head banged until he was 4 to get his way and when she finally tried to ignore him it went away too. That is why I gave it a go. It may not work with Hobbes, or perhaps you have already tried it.

Walker had such a need for touching that it was a problem in JK as well. Children are not to touch other children. Walker still loves to touch you and play with your hair, stroke your hand, be snuggled. It was a concern in the begining and was a sign of autism for him as well. It took so much time to teach him "where do your hands belong" so that he did not have his hands in your face or was tapping at others. He still is very touchy and feely, but it is more controlled.

Children often love the repetition as well. We seem to watch the same videos over and over and over again until we know the movie word for word. Ask me about any Dora episode or song. Come on- try to stump me! :) I do think that his needing to start and stop a video over and over again could be a problem, but it could just be his form of repetition. Sometimes our kids stop a movie when it starts to get to boring parts and then need to play the start of it again.

Walker chewed on things as a baby, but it ended there. If Hobbes is 3 (?) and still chewing I do not know what to say about that as we never had that aspect.

Does Hobbes seem to understand you? Is he making his own language up? Walker still does make up language. Is he completely closing off or still part of what is going on?

I see your concerns and you have some problems different from us. Never underestimate the isolation of speech problems for children. It can really make them withdraw and be devastating for social skills. Have you tried to test his non-verbal? Maybe make a picture book for some everyday stuff for him to communicate with. A one point we had a picture of a glass for milk, one for food, one for happy, one for sad, one for tv. etc.

My thoughts and prayers are with you for Monday.

Leigh

Janette
04-17-2005, 11:52 AM
Leigh,

It's because Walker is only in SK that you've had such a difficult time getting him IPRC'd. I'm really glad you pushed, though. That can and has made all the difference for Walker entry into grade one.

Yes, it's too bad that many of the supports end for Evan at 2 1/2 to 3 years. We still have the children's rehab. centre available to us, but he will only continue to receive an hour of his 3 combined therapies per week. We presently have CCAC helping with homemaking, but they've discharged the dietitian. I doubt that they'd give him speech therapy since he's already getting an hour elsewhere, but it's worth while asking anyway. I'll try to call his case manager there this coming week.

It's really not too difficult to put Evan in daycare, it's just that I'm home to help him anyway. I know that I need a bit of a break, though, and that he'll adjust well. He's already in Sunday School, and is in an ECE class at the children's rehab. centre from late January until the end of May. He loves both!

Yes, we basically will have less programming and support available if Evan isn't placed into daycare for at least a morning or two per week. I'm presently considering 2-4 mornings per week, but still have to look into a couple of programmes. It does sound backwards! I really think that there should be more support for parents who are willing to make sacrifices and stay home to work with their special needs children. It just doesn't seem right! And yes, it's scary to move from one program to another because we do like what we know and feel comfortable with it.

Janette
04-17-2005, 12:03 PM
Shannon,

You're doing the right thing by going with your "Mommy's gut". As Hobbes' mom, you know him best. Hopefully the autism testing will give you some answers and then the support that you so need. I hope that Hobbes has settled down from his hair cut. How hard that must be for both of you! There are a couple of new poems posted in the Insprational section that you really need to read. I'm had a good cleansing cry in there today, so you'll want to have the tissues handy.

It's hard to believe that you can't get the necessary funding because "speech delays aren't a special need". I'm glad you were able to get a Special services worker(social worker) to help with the paper work for funding for Hobbes to have one-on-one support when he is there. I really hope that you can get the necessary subsidary. We've applied for it too, and hope to hear back soon. That's amazing that you have a SW with you until Hobbes is 18! How awesome!

Leigh
04-17-2005, 05:27 PM
I am appalled at the lack of help in the early years sometimes for speech. My father in law is on a board of trustees for the largest school district in Ontario and told us that we would likely have to wait for school intervention until Walker was in grade 4. That is far too long for a child to wait when there are so many social and self-esteem issues associated with it.

Janette, we pushed hard for the IPRC process and had a lot of resistance. We did not want to wait and thanks to some private testing and reports from CHEO we forged ahead. Do not let anyone tell you that it is too early to start the process.

Shannon, I do hope that you will post tomorrow and let us know how things went. We are thinking of you and Hobbes and give out big hugs!

{{{Shannon and Hobbes }}}

Leigh

zapsmom
04-17-2005, 09:08 PM
Leigh and Janette,(everyone else that I may have left out)
Thank you so much for the great support this weekend. I am concern that we may not do the testing. Hobbes is running a fever today so i didn't know if he will be okay for tomorrow. Please pray that he is better by 10am tomorrow. :D

Shannon

Janette
04-17-2005, 10:14 PM
Oh Shannon...I'm so sorry to hear that Hobbes is getting sick now too! I'm praying that he'll be well again by the morning! You don't think that he's coming down with the measles too?

ElisMom
04-17-2005, 10:31 PM
OMGOSH!!! I hope its not the measles too Shannon!!!