Developmental disorders/learning disabilities/genetic syndromes & more support group

[bumpin2012]

I hate when people try to minimize your concerns... Or act like you simply WANT something wrong worth your child.

I hate being in limbo. Just waiting for assessments here, and will be for several months.

 

[Starry Night]

Hi starry just a quick post. My daughter caught pox at 10 months old and they were bad she was COVERED but she coped with them rather well. a few rough nights of no sleep as she was so uncomfortable but overall ok. Once the spots are out and they blisters have burst and gone "scabby" then they are no longer contagious. Over here in the UK anyway. my oldest who also has had them was allowed to go back to pre school while spotty as long as they spots have crusted over

I'm really hoping we caught the magic window of my older niece being no longer contagious (her spots were scabbed by the time we saw her) and before my younger niece was contagious. I think you're most contagious the day or two before the spots appear. The pox are going around my nieces' and nephew's school so it's also possible the younger one caught it from a classmate more seriously affected than her sister. (My older niece never got a fever or a cough or runny nose....just a few pale spots)

Anyways, I can't live under a rock until the 3 week incubation period is over. Most kids are vaccinated anyways so I am hoping it should be fine. My SiL said her doctor told her the shots had been updated since her girls received them. They never got a second dose which is now standard. I've decided I will only cancel the appointments if either of my kids actually has spots appear before that.

On another topic: did anyone else have a struggle with getting their spouse to accept the diagnosis? I think my DH is having a really tough time. He now says he accepts our son has autism (that was a long fight with lots of arguments even after the diagnosis) but he is constantly shutting down any and all talk about therapies. If it's not a free program run by some charity, he's not interested. Even then, oh, it's too far or too early or what if he's called in for over-time (rarely happens). He then gets upset if I confront him on his resistence but he shuts me down every damn time. I went ahead and signed up our son for a music therapy without consulting DH because I knew he would hem and haw until it was too late. So today I told him we're going and that's it. He complained, of course.

Getting him to face the fact that we NEED to get our son into some form of therapy even with the great cost is going to be so hard. I wanted to face him tonight on that but he seems to be not feeling well and drifted off to sleep much earlier than usual (I'm recovering from a stomach bug). I don't know. It's just been so frustrating. I've already told him that he's been my biggest obstacle so far. But he keeps insisting that our son's case is mild and won't need much therapy. He is totally pulling that out of his butt. The specialist clearly stated my son was in the middle of the spectrum. Yes, she was very encouraging about my son showing signs of being able to improve. BUT THAT REQUIRES THERAPY!!!

Edit: Though, in fairness to my husband, those around us are not helping him with his denial. "Oh, he's fine" is something we still hear all the time. I know I worry but I am with him all day and see where the struggles are. It's more than a speech delay -- something is getting lost in translation. And he's still a toddler so some of of his peers have some similar struggles--but they are all growing out of it and it's not to the same degree.

 

[Starry Night]

I hate when people try to minimize your concerns... Or act like you simply WANT something wrong worth your child.

I hate being in limbo. Just waiting for assessments here, and will be for several months.

Limbo stinks.

There is the limbo of waiting for a diagnosis and then there is the limbo of trying to get onto (and off of) waiting lists. I still don't have an appointment date for my son's hearing test and he was referred last July. Yeesh. I appreciate not having to pay out of pocket every time but Universal Health Care sure stinks sometimes. Private Care may treat you like a customer but because you are a customer they want your money and time and will serve you to get it. Universal Health Care is about cutting costs. It's out of necessity but it doesn't help us any.

 

[RachA]

Starry-if say that your OH's reaction is fairly common. Men tend to be 'fixers' and he's probably feeling like he should be able to 'fix' this and because he can't he's finding it hard. He needs to get there in his own time.
I would say that I'm a bit of a 'fixer' and it took me a lot longer to come to terms with the fact that my daughter wasn't developing at the correct rate.
Plus it is so hard dealing with lots of different therapies-I felt for a long time that DD never got to do anything fun because she had so many different therapy sessions to go to and I didn't have the energy to go to something just for fun. Plus I didn't want to have to explain what her issues were to more people that I felt needed to know.


Your oh will get there-I wouldn't push him as it has to be at his own pace. In the mean time try as many free things as you can.

 

[Starry Night]

Thanks. We hashed it out a bit last night. I don't think he even realized that is what he was doing. He thought he was planning for every contingency. I had to tell him that there is going to be so much we have to plan for that I can't plan for every "what if" scenario. Some of them we will have to take them as they come. So many therapies are time sensitive or have extremely long wait lists so I can't always take the time for the "what if one of us gets sick one day and can't go" or "what if I lose my job and can no longer pay for it" or "but gas is so expensive". To me, those questions sound like stalling as the reality is our son needs therapy, the reality is the therapies are all going to be in the city as there is NOTHING here and the reality is those therapies are not covered by the government and are expensive.

I will try to give my husband more space. I know I have my own issues to get through but because of the time sensitive issues we can't afford to have any doubt or crisis. I've put them on the back-burner for my son. I assured DH that I will keep my ear to the ground for any community programs that are free/cheap and for anything I can research for myself online to do at home. But at some point we will have to do some sort of private therapy--even in a limited sense--and that it will be costly. I could tell he was willing to think it over.

His "what ifs" also hurt my feelings because he made it seem like I'm just rushing into things without considering all the aspects. I spend my day researching and trying to figure out what to do. I see the other local parents on the FB sites crying over the lack of programs and the waits and being denied the most basic of help. I told him we are SO lucky that the doctors have been the ones to catch the diagnosis. We've been having some opportunities falling into our laps. I told him the path is being laid out for us when so many people have to fight for years just to get somebody to listen to them. It would be a crime not to take it.

I did manage to get out last night for a ladies' evening and it was so wonderful to have a night away from it all.

 

[RachA]

That sounds good.

My oh accuses me of being so laid back about everything and he thinks I'm bit concerned about DD in the same way as him. I've had to tell him that I might be ok outwardly but inside I'm breaking down on a regular basis. I worry that if I cry I won't stop so I just don't let myself cry. I also know crying etc won't help me or DD. And I know that worrying about her starting senior school when she's 11/12 is pointless because she's only 5 and so many things will change in the next 6 years. OH does worry etc though.

 

[alibaba24]

That sounds good.

My oh accuses me of being so laid back about everything and he thinks I'm bit concerned about DD in the same way as him. I've had to tell him that I might be ok outwardly but inside I'm breaking down on a regular basis. I worry that if I cry I won't stop so I just don't let myself cry. I also know crying etc won't help me or DD. And I know that worrying about her starting senior school when she's 11/12 is pointless because she's only 5 and so many things will change in the next 6 years. OH does worry etc though.

I can really relate to this. on the outside i appear like I am confident and got it all under control but on the inside Its a complete stress fest re my daughter. I have to work hard at not worrying about her

 

[Starry Night]

Yeah. I know I need to let it all out at some time and allow myself bit of a pity-party but I feel like I need to have at least two or three ducks in a row before I can stop and scream and feel sorry for myself. I nearly broke down yesterday but the night out helped.

I can really see my inlaws' influences over my DH at times like these. He has tried hard to work against most of the more negative influences (they have good influences too, obviously) but planning is one area the wires cross. With my in-laws even the simplest plans - like which service to attend on Sunday and how we'll get there-- is over-complicated with fussy details that are constantly being second-guessed and changed and every suggestion debated until noone knows who is coming or going. My DH wants to know exact to-the-minute details of a day's plan weeks in advance. The only way to do that is to plan for EVERYTHING and to assume NOTHING is in stone. You can't ever to commit to anything that way.

I am far from one to rush into things. I love to do my research. And I'm normally the Eeyore of our relationship and my DH the Tigger. So it's disconcerting when the roles are reversed. Though I guess I'm being more of the Piglet (afraid but will do what must be done) and my DH is being Rabbit (the ultimate fuss-pot)

can you tell that Winnie the Pooh is the current obsession in our house? LOL

 

[bumpin2012]

Yes. What RachA said. It took months of gentle prodding for my hubby to even accept that G was different and falling behind. He just needed time. For the most part, I did my research and just went about doing what I wanted/thought was needed. He actually told me at one point that he thought I was acting crazy, and maybe it was time that I simply accepted that he was fine... Denial, denial, denial.

Universal health care has its downside, but I'd never be able to afford all the services we've had access to. A year for a hearing test does sound extreme... I think we waited 3 months here in NS...

 

[annanouska]

My battery will cease soon so just a. Quick hello will check in properly when I have power

 

[Starry Night]

Two more days and my son's speech therapy starts. Looking forward to it and hope to get things going. He has come so far since his assessment in November. So far no real sign of chicken pox. He has fine rashy patches on parts where he sweats a bit but it looks like eczema. I have had eczema patches just like his on my arms since I was 14. Today I did find a more definite spot/bump on his bottom so holding my breath a bit but am hopeful it's nothing. My daughter has had no signs and she's the one without the vaccination. We're now in the prime incubation period. (I read it usually appears after 10 to 21 days and we're on day 14 from the last day of exposure).

We started music therapy last weekend and it went quite well. My son had a lot of fun. It was difficult in a way to see a room full of kids with autism. I found it highlighted my own denial. Some kids seemed so obviously autistic and I caught myself thinking "My son is not like that". Then I had to face....he IS like that. He has autism. OK, he's not severe, but he is a swirly, twirly, flapping, toe-stepping boy.

And by the end I felt much more comfortable. And then I realized, I was not being judged and he was not being judged. My son could wander off and bang on the window and no one looked at either of us strangely. No one blinked when he made 4 escape attempts in the 45 minute class (he is a runner). It felt wonderful not having to apologize for my son or scold him endlessly just so the other parents wouldn't think I was "OK" with his 'bad' behaviour. All the other kids were the same. Everyone understood. I never knew how much I apologized--how nervous I was out in public and even with friends--until I was in a safe space where others understood.

 

[Thurinius]

So we've been told we will definitely get our diagnosis appt by end of June. Already feeling tearful about it which is stupid because I know already what they're going to say: he's asd and he's not the mild end of the spectrum

 

[Reid]

So we've been told we will definitely get our diagnosis appt by end of June. Already feeling tearful about it which is stupid because I know already what they're going to say: he's asd and he's not the mild end of the spectrum

Big hugs xxx

 

[Reid]

Two more days and my son's speech therapy starts. Looking forward to it and hope to get things going. He has come so far since his assessment in November. So far no real sign of chicken pox. He has fine rashy patches on parts where he sweats a bit but it looks like eczema. I have had eczema patches just like his on my arms since I was 14. Today I did find a more definite spot/bump on his bottom so holding my breath a bit but am hopeful it's nothing. My daughter has had no signs and she's the one without the vaccination. We're now in the prime incubation period. (I read it usually appears after 10 to 21 days and we're on day 14 from the last day of exposure).

We started music therapy last weekend and it went quite well. My son had a lot of fun. It was difficult in a way to see a room full of kids with autism. I found it highlighted my own denial. Some kids seemed so obviously autistic and I caught myself thinking "My son is not like that". Then I had to face....he IS like that. He has autism. OK, he's not severe, but he is a swirly, twirly, flapping, toe-stepping boy.

And by the end I felt much more comfortable. And then I realized, I was not being judged and he was not being judged. My son could wander off and bang on the window and no one looked at either of us strangely. No one blinked when he made 4 escape attempts in the 45 minute class (he is a runner). It felt wonderful not having to apologize for my son or scold him endlessly just so the other parents wouldn't think I was "OK" with his 'bad' behaviour. All the other kids were the same. Everyone understood. I never knew how much I apologized--how nervous I was out in public and even with friends--until I was in a safe space where others understood.

Oh that all sounds like a breath of fresh air xx

 

[Starry Night]

Thurinius -

I feared our son's results as well even though I too expected to hear "he has autism". I thought for sure the tears would come. But it ended up being OK. I have had many tears since though. I am hoping that's fine and normal! At least you know you're not the only one.

I may cry when the official results come in the mail. We have an official diagnosis but no details besides "He has autism and is somewhere closer to the middle". The harsh realities in black and white may be tough to swallow.

lynne - it really was a breath of fresh air. I mean, apologizing had been my life so that was my normal. Didn't even realize it until this week. So excited to go back. We also start dance therapy. There is a support group where families get together but it's in the city and on weekdays so we probably won't ever get to go. I am on the facebook group though and requested they plan some Saturday events as that's when we'll be in the city. we shall see though. Right now I just want my son to meet other kids like him and to learn to engage in a safe place.

I have signed up my son for a special needs' swimming class. It's a community program run by volunteers so we only need to pay administrative costs. $20 for 10 private 1:1 lessons. Don't know what the waiting list is like though.

 

[alibaba24]

So we've been told we will definitely get our diagnosis appt by end of June. Already feeling tearful about it which is stupid because I know already what they're going to say: he's asd and he's not the mild end of the spectrum

absolutely horrible time you have had to wait

why can't they just say then and there when they asses surely they know then?

 

[Thurinius]

Thanks all. Starry night I really admire you for going to that music group. There is a monthly meeting of sen children here that I haven't dared attend yet. I'm worried about seeing my son's future.
Though I accept,he's asd I really want to believe that he'll catch up with his peers, that he won't be two years behind forever, that he'll learn social skills, that he'll make friends, that he'll talk properly.
But I'm terrified if I see older autistic children then that delusion will shatter and I'll have to accept that he has learning difficulties that he's not going to be 'normal' that he might never be able to leave home.
I'm worried the consultant will tell us he's really, badly asd that there is no hope that he'll be normalish

 

[sequeena]

Sorry everyone I know I am bypassing your replies but I just can't think straight right now I am so angry. Whilst waiting for a bus Thomas was babbling to me. A middle aged man then started making fun of Thomas by doing daffy duck impressions. I am so so angry that anyone can make fun of a child. I hope he falls under a bus. I will come back later and reply to posts I have to dp washing now

 

[Thurinius]

Sorry everyone I know I am bypassing your replies but I just can't think straight right now I am so angry. Whilst waiting for a bus Thomas was babbling to me. A middle aged man then started making fun of Thomas by doing daffy duck impressions. I am so so angry that anyone can make fun of a child. I hope he falls under a bus. I will come back later and reply to posts I have to dp washing now

That's horrible!
But f*** him, such low life aren't worth it. With any luck his obnoxiousness was aimed at the wrong person and he got his just desserts.

 

[bumpin2012]

Lowlifes... Big man there, making fun of a child