We saw the service worker for Hobbes yesterday. It was not no real help at all. She gave us more info and told us of classes and support groups that were coming in the fall. She said to call the speech therapt and tell her that has been a dx for Hobbes of Austism and maybe we can get help sooner. She could see how Hobbes has the need just for MOM and commented on it but give no suggestions on how to help me. It is a little friuastrating. They are focusing on his going to nursery school which I think is great but what about at home now!

We were told that they can't tell what level that Hobbes is at b/c he is too young. They can tell more when he is 5 or 6. He should not get any worse. That is good! They could not tell me the thing that I really want to know and hear......Will Hobbes ever talk? I was told they didn't know if he would or not. It was too hard to say. I am trying not to focus on that but it is in the back of my head that My little boy may never speak! Once I again I feel a little overwhelm at the thought and I am trying to think postive! Especially since he hummms IDIDN"T KNOW! So I keep repaeting that to myself! It was hard at his party b/c my friend's 3 years wa there talking and He couldn't figure out why Hobbes doesn't talk! He thought that Hobbes was a baby. It was hard and a bit sad for Dh and I.

So that is part 2 of Hobbes.

Shannon

Big {{{HUGS}}} Shannon. I wish every issue with our kids had an answer that worked 100% of the time. How frustrating to have to wait another few years to get a better idea of Hobbes' level. And it doesn't seem like they have many suggestions for the meantime. Here we have three or four agencies with therapists and programs. Do have any other places you can turn for assistance?

There is a centre for Austism here called St.Amant Centre. It is really good but it is expensive and I think that you have to pay for it yourself. They did really intense work with the kids. Like three hours of therapy 1:1. Speech and ot and then something else. I think I would refer Hobbes not to have to go that hard core. I know tha tit would be hard for him. So I am playing the waiting game.


Shannon

Oh, Shannon. I am sorry that you did not get any help this time. {{{Hugs}}} It always seems to be later that they can help you, doesn't it? :evil: It is horrible to have to play the waiting game for speech. We were so sure that Walker would not talk properly at all two years ago as no one could understand him at all. I look back now and wonder where the time went. We still have many speech and language problems, but he is at least understandable most of the time. Perhaps they really can not give you an answer at this point and will have to wait it out. It would seem to me though that they would have a better idea of his capabilities if they started some programs for him now! How soon for speech?

Since he hums, how about trying some "melodic intonation"? I had to go through that with my Mother after her stroke and was flabbergasted at it all. She could not talk except to say the word "no" (it was all she was left with!) yet she could sing with me! By gently tapping the syllables on her wrist or arm we could sing together and communicate through it. Maybe Hobbes would benefit from something like that and surprise you too! Listen to the humming and see if there is any pattern to it.

Leigh

(((HUGS))) Shannon! It's SOOOOO frustrating to have to sit and wait! You might be surprised at how good some of the classes are. If you get a chance, try the Hannen programme. You'll learn some neat techniques to try to instigate speech. A support group would also help you to feel less alone. Have you already called the speech therapist to see how much sooner you get in with Hobbes?

I don't know who told you that they can't tell what age/developmental level Hobbes is at, but they've made me furious, as that is not at all true and they are totally misinformed! Certainly someone in one of the agencies involved with Hobbes should be able to do the Batelle (sp?) test with him. We've found it to be quite accurate, except in the parts that involved speech, of course, but at least it gives you an idea of what age level your child is at developmentally.

I've asked the "Do you think that he'll ever talk?" question, too, and the "I don't know" is so hard. It's something that I needed to hear, though, and I'm determined that Evan WILL learn to speak one day, as I'm sure you are with Hobbes. I understand about it being so hard seeing other 3-year-olds speaking in full sentences, when ours cannot. Believe me when I tell you that I've had lots of tears over the past three years.

I calkled the speech theraptist yesterday and she said"Oh< Hobbes has been dx with Austism, okay then PCT will take him now only." Maybe I will call you later this week to let you know where he is on the list" I am so mad at that! I thought that he would have more help. They just focus on the nursery school/daycare. Like that is the ONLY thing that is going to help him! GRRRRR!

About the age/developemental test, It was they can't not tell us at what level of Austism Hobbes is at ,at this age b/c preschooler with Austism are hard to tell at this point. When He is 5-6, they will be able to see where and what level he is at. The classes are on Austism and how to help Hobbes , ourslves and Zoee(I hope) So I am looking farther to them in September.

On a good note, Hobbes, I think, has a spot in the nursery school(private) I took the application in yesterday with the year payments and so he should have the spot. I am going to call later to see.

Shannon

That's great, Shannon! I hope he got in! How many mornings per week is it for?

Hobbes Got a spot in the nursery school! He will be going in September to may, Monday, Wednesday, Friday from 1:15 to 3:15. For him, that will be enough. I am not sure how he will do at first without me but at least he will have a worker just for him. So now the speech will probably start! That kinda burns my butt a little . I was not going to put him in nirsery till he was 4 or 5 but was kinda pushed into it. I am glad but not glad. Oh well as long as Hobbes gets help!


Shannon

I know what you mean, Shannon. My plans were to put Evan into a specialized Junior Kindergarten class at age 4, but that changed b/c he would have lost most of his agency support as we head towards the school system next year if I didn't put him into nursery school part-time in September. That really seems stupid, b/c I'm choosing to give up my career (at least for now) to stay home and help him. You'd think that it should be the other way around...that there's more support involved if we're home with them.

Janette, that is what i was thinking as well! I am feeling a like things are being taking out of my hands with now we want to do things for Hobbes. I am a SAHM in the day so I can be with the kids and now I have to put hobbes in nursery so he can getthe help to speak. I am wondering what would have happened if we stood our grounds and said NO we are going to keep to our plans that we had for our child. Would they have just left him to get worse? Maybe I am starting to go through the angry, denial, fruastruation part of the finally being told that I have a special needs child that will always have problems. I just know that i am feeling alot of mixed emtions this week. Sorry to go on! :( :oops:


Shannon

{{{Shannon}}}

Your feelings will go up and down and it is understandable. You finally have a diagnosis for Hobbes, but no real help yet, just the promise of it at some point. In order to get some help you have to disrupt your routine and pull Hobbes from the familiarity of your home when you likely just want to keep him close to you right now. They are giving you no indicator as to how they can help him, nor any prognosis that is quantitative. It is insanely frustrating!

Walker was so bad that they told us they would have no idea for his speech until he was 5 or more. Thankfully, the speech pathologist who referred us to CHEO got us in FAST and he was able to benefit from some extra sessions there. We knew he was getting better within the first 8 months, but was it an eternity! I still do not know what has caused this and further testing is likely in 2 years. Long time away when all you want is an answer and solution. The original speech pathologist told me that often there is no diagnosis for kids like Walker.

Janette is correct. It seems like they should be more able to provide support for the pro-active parents, but they do not. It seems like you are behind the 8 ball when they should realize that whatever they invest in a child in a situation such as Hobbes or Evan (with interactive SAHM) that they would gain 10 fold back. When we started a private therapy session for Walker at our own expense to run alongside his CHEO sessions I was given the impression that he may lose his spot. I made it clear that financially we could not continue with it and he stayed in the program. They should have been thrilled as he made great strides within that time frame where he had 2 sessions running side by side plus all the home support.

Leigh

In some small way, it helps to know that I'm not the only SAHM going through these feelings, Shannon! It's so sad to think that the human powers that be would let our kids get worse or rather not improve at all, just b/c we're willing to stay home and work with them. You're mixed emotions sound a lot like what I shared with you over the past couple weeks about where I'm at, Shannon. (((HUGS))) and hang in there!!!!!

It is a great help for me as well knowing that there is a great support system here for me wheter it be with Zoee's reflux or Hobbes'Austism! On a good note, we have told IL's laws about Hobbes. They have been very support! :shock: They had though he was months ago! :shock: So they are now being very supoortive. :D We will see how long it lasts! :wink:



Shannon

Shannon, I'm so relieved for you about your ILs! I hope it lasts and that they can help out by giving you and Dan a break once in awhile!

Me too! But camping season is here so not till after summer! camping comes first! :lol: :roll:


Shannon

I'm glad your in-laws are being so supportive, Shannon, and I hope that that continues for you!

It is great that the inlaws are being supportive, Shannon! Even if it does not seem to last at least they know and accept it. That means that you do not have to explain every little thing to them I hope. Also, it should be helpful for your DH to have them know and be understanding as well. That in turn helps you!

Leigh

Unfortunately, Ido have to explain everything to them still about Hobbes! My Dh is still not comfortable with them knowing and they want to tell the other family memeber about Hobbeswhich to me is not a problem but for Dh it can be.So I didn't know if it will be easier. My MIL just keeps saying"Shannon, you really have your hands full now. I am surprised that you have not break down yet." I just say I knowand I can't b/c of the kids and no one else is around.So We will see! I am thinking Postive.


Shannon

My MIL just keeps saying"Shannon, you really have your hands full now. I am surprised that you have not break down yet." I just say I knowand I can't b/c of the kids and no one else is around.So We will see! I am thinking Postive.
What a great response, Shannon! I hope that your MIL clues in to how much you need the help!

Way to stay positive, Shannon!

Hopefully she will be understanding and helpful now. Maybe they should know more about Hobbes' condition so that they can help? At least the reaction was positive and it speaks volumes that they thought something like autism exisited before you told them it did. Perhaps once they are told how they can help they will?

As far as other family members go, we all have segments of family that are not helpful nor supportive. My Mother had a massive stroke 2.5 years ago and she is from a huge family. Some of her sisters expect me to keep them up to date on her and they never go to see her or offer to help. Plus they question every decision I make for her. It came to a point where I just made it clear that it is up to me to make decisions for her and when they have no involvement with her they have no right to give me their 2 cents worth. Question me and I will give you the answers, but do not try to counsel me when you know nothing about her and her health concerns. It can be very frustrating until you come to realize that you are the one dealing with the problem and making the decisions with or without support.

Leigh

Leigh

Leigh,
I am sorry about your mom. I know how hard it is when you have a sick child and a sick mom to take care of as well. My mom had a chronic heart diease and was having difficult with breathing, walking, and was in horrible pain alot the time and she would help my grandpa who was in better health than herself. Her family never helped her and would tell her to stop complaining. When she passed away, they said that they would stay in touch with us but they have nothing to do with us or my kids. My mom had warned us that it would be this way. It is very sad when family are like that. I feel that when there is health problems in a family, everyone should be there to help but only if they are not going to look down at that people!

Shannon

You are so right, Shannon. What is that saying " you can pick your friends, but not your family". I do love my family, but find some segments of it a bit difficult to deal with. I am very easy going by nature so I try not to let them get to me. Since I have children, a DH and a Mother who needs me I know where my priorities lie.

I am sorry to hear about your Mother. It is difficult to lose a parent and to have family problems in addition...not so nice. My Mother knew very well how the family could be pre-stroke. However, the stroke has left her with some global aphasia, mainly expressive aphasia and she is not able to really grasp why they do not visit. It makes it very difficult to explain to her why Aunt so and so has been so busy for the last 2 years...! On a positive note, we all got together last Sunday for the first time in over 12 years and it was actually a nice visit. Mom loved it! THe important thing for me was to see her happy.

Leigh

Leigh, I am glad that you all had a good visit. I work with people that have strokes and I have seen where even their children didn't visit them and it is hard on them. You are right, it also great to see your own parent happy and I am happy for you!


Shannon

It is hard sometimes as I talk to her everyday on the phone but from January on it was really hard to go out and see her with any frequency as the kids were almost always sick and I could not take the chance of bringing something really nasty to the nursing home. There was a fair amount of guilt in not being able to go out as often as I would have liked, but I was also dealing with how incredibly sick Iain had become and was trying to hide his tiny little body from her, too!

We are getting back into a routine with her now as she had suffered for months from an undiagnosed bloodclot ( I had a fight with the doctor to get the diagnosis). Thankfully, she is doing much better now and it should be gone soon.

Must be hard to deal with the elderly, especially when they seem abandoned. I have seen so many sad souls and wish that I could make it better for all of them at the nursing home.

Leigh

It can be hard to see especially if they are more alert and know what their families are doing and thye are alilt hurt way it so they take it out on you.

Sorry about the doctors with your mom. My mom went throught that with doctors as well. They were telling her that she was not sick when she di have a servious heart disease plus she was daibete and on other thing but I can't spell it( :oops: ). So the doctors who think they are God that didn't know now to work with our children seem to be the same one who play God with our parents. :x GRRRR! They all need to go back to school!


Shannon

So the doctors who think they are God that didn't know now to work with our children seem to be the same one who play God with our parents.
And our grandparents, and our in-laws... :?

Sorry I forgot about all family members! MMMMM, i am worrying how they(doctors) would feel if it was their family member gettting the run around!

Shannon

MMMMM, i am worrying how they(doctors) would feel if it was their family member gettting the run around!
I'm sure they've got buddies pretty high up, so they don't have to worry. They can just ask their colleagues for input.

When Mom finally made it into stroke rehab after 3 rejections I was appalled at how the system works. A stroke rehab doctor said that all it would take is for one politician to actually have to go through the system like an everyday person and the system would be overhauled in an instant. I think that she is right, but as Janette pointed out doctors and people who have the power to make changes do not have to go through the system like us plebians.

The only reason Mom's bloodclot was diagnosed was because I started to call him every day over it which was really hard as we had Iain coming to a head with the GERD at the same time. Makes you wonder what happens for those who can not speak for themselves and have no family or friends to watch over them.

Leigh