I'm not sure what to say or do (RE: Autism and the like)

[Tiff]

It can be a confusing process for sure. What boxes are you trying to tick off? Massive hugs, its hell in a handbasket trying to go through this.

Feeling really low today, we were together with my nephew yesterday and while I know (especially at this age) that 6 months is a MASSIVE difference between the two, how advanced he is in his speech and coming up to me and my hubby and giving us proper eye contact, telling us stories about what he's done for the past couple of weeks etc. There's no WAY Claire would do that.

We don't see my nephew that often, but he was like that back at Christmas too (which would have put him at 3.5, same age that Claire is now) and it breaks my heart that she can't do that too. Although it doesn't seem to bother HER that she can't do it, she's quite content to always be on the sidelines and observing everyone else.

Like she's a part of the world but not IN the world.

Sucks too because I can't friggin' talk about it with anyone. All I get when I voice my frustrations or upsets is people being so quick to defend Claire. Which is awesome, but I'm not trying to sell her out or anything, or try and highlight the fact that she has difficulties... but as her Mom it is DAMN HARD to sit back and watch how different she is to other kids.

Or the people who tell me that Claire is fine because they see her on a good day.


Sorry to totally hijack your thread, just feeling really sad and lonely about this morning.

 

[AP]

Did you just invade my mind?

 

[Midnight_Fairy]

hugs xxx

It can be hard, do you have a ASD support group or network? Mine has been my lifeline as can all meet and its not like a competition.

If you want to ask about the ADOS fire away, my son was 5yrs 5mths at his and I have all his IQ score and results if you want a nosey x

 

[Tiff]

Wasn't sure who you were aiming that at MF - but if you don't mind I'd love to have a nosy at your son's ADOS. I would like to know what to expect!

Sandi - I totally get it, it friggin sucks.

In my most selfish and awful places of my mind there are times where I want her to have some sort of delay. I'm so freaking terrified that the reason why she's behind is because I'm some sort of shitty parent. I can't explain how often I feel like she deserves someone better than me as her mother.

Which I know is silly and whatnot.

 

[Midnight_Fairy]

aimed at both of you

When I get paperwork sorted from old house at weekend il scan it in and pm you and then email to you. I had a friend online send me parts of hers and it really helped me understand what to expect rather then the "unknown" xx

 

[AP]

Thank you MF, I think we'd both really appreciate that, very kind of you!!!

 

[AP]

No Tiff I totally get you. I sometimes think ppl think I'm a lazy arse of a parent an that's why things are this way. It's only when I see the medical professionals and they always say "you do SO much for Alex, I don't know how you all do it" that makes me feel any better

 

[Tiff]

Thank you MF, that is super sweet of you. I greatly appreciate it!

Sandi - I'm glad I'm not the only one. We've been told to join the Autism Ontario foundation etc and get to know more families... but if I'm honest I don't want to do that until we get an actual diagnosis. I feel like a fraud even posting in this Special Needs board but until she gets a diagnosis its hard to say.

Because of how tricky it is to diagnose a girl I'm terrified that I'm going to be told that there's something "up" with her but they don't know what it is and we're just going to have to wait.

The only reason why I actually post on this board because there is a definitely delay in Claire. If its Autism that's the culprit or something else time will tell. In my heart of hearts I definitely think Autism.

Just dunno what to do if she scores normal on the ADOS. I know one of the things is a birthday party (friend told me) and if she had had her ADOS a year ago there's no way she would have understood what a birthday party was. Even at her 3rd birthday party she let all the other kids open her gifts and just hung out on the edges. Its only recently that she's actually started to piece together what a birthday party is.

Do I say that to the testers?

 

[JASMAK]

It can be a confusing process for sure. What boxes are you trying to tick off? Massive hugs, its hell in a handbasket trying to go through this.

Feeling really low today, we were together with my nephew yesterday and while I know (especially at this age) that 6 months is a MASSIVE difference between the two, how advanced he is in his speech and coming up to me and my hubby and giving us proper eye contact, telling us stories about what he's done for the past couple of weeks etc. There's no WAY Claire would do that.

We don't see my nephew that often, but he was like that back at Christmas too (which would have put him at 3.5, same age that Claire is now) and it breaks my heart that she can't do that too. Although it doesn't seem to bother HER that she can't do it, she's quite content to always be on the sidelines and observing everyone else.

Like she's a part of the world but not IN the world.

Sucks too because I can't friggin' talk about it with anyone. All I get when I voice my frustrations or upsets is people being so quick to defend Claire. Which is awesome, but I'm not trying to sell her out or anything, or try and highlight the fact that she has difficulties... but as her Mom it is DAMN HARD to sit back and watch how different she is to other kids.

Or the people who tell me that Claire is fine because they see her on a good day.


Sorry to totally hijack your thread, just feeling really sad and lonely about this morning.

Ohhh hon, I had to comment on this because this is me. My twin sister has a daughter 8 months older than Makena...you know how hard it was to hear how perfect her daughter was all the time! Honestly, it hurt so bad, it felt like my sister was bragging on purpose!!! But, my daughter is BRILLIANT at school (thanks to her therapies) and her daughter FAILED grade 1. I feel bad for her daughter, for sure, but part of me was like....yeah, you want to hear Makena's school grades AGAIN!?! Don't worry...I didn't. This is one of the hardest parts of having a child with a developmental delay....when you hear and see those deays compared to other children.

 

[JASMAK]

Thank you MF, that is super sweet of you. I greatly appreciate it!

Sandi - I'm glad I'm not the only one. We've been told to join the Autism Ontario foundation etc and get to know more families... but if I'm honest I don't want to do that until we get an actual diagnosis. I feel like a fraud even posting in this Special Needs board but until she gets a diagnosis its hard to say.

Because of how tricky it is to diagnose a girl I'm terrified that I'm going to be told that there's something "up" with her but they don't know what it is and we're just going to have to wait.

The only reason why I actually post on this board because there is a definitely delay in Claire. If its Autism that's the culprit or something else time will tell. In my heart of hearts I definitely think Autism.

Just dunno what to do if she scores normal on the ADOS. I know one of the things is a birthday party (friend told me) and if she had had her ADOS a year ago there's no way she would have understood what a birthday party was. Even at her 3rd birthday party she let all the other kids open her gifts and just hung out on the edges. Its only recently that she's actually started to piece together what a birthday party is.

Do I say that to the testers?

My daughter has ASD and she had no problems gettin diagnosed...I know several girls with ASD n fact...also in Canada. xo

 

[Tiff]

Out of the 4 other Moms I have met and befriended, 3 of them have girls too. But their kids were diagnosed so much younger than Claire was... I guess that's why I worry so much. Well that and I am a massive worrier when it comes to this stuff. I swear I'm gonna be a full out mess come the week before her test!

We NEED the diagnosis so badly, we can't afford to pay for her OT out of pocket/privately. No diagnosis means no therapy which means I will probably have a nervous breakdown.

I know I'm being crazy pessimistic, and I'm driving myself crazy. Hopefully in 3 months when we hear the results of her ADOS I'll finally be able to breathe again. And I'm SO sorry about feeling that way with Makena... I totally understand. Its not like you are happy that her daughter failed because obviously you love her, but its nice when people who are holier than thou get taken down a notch.

I know, I'm awful.

 

[JASMAK]

I was a mess too...I was at the point where the diagnosis was such a friggin relief! No one can afford the therapies, but there is other perks too...so, if she gets that diagnosis...there is still work involved....but, worth it when its all sorted. I stress too...it was the diagnosis...which took 10 mnths...then the therapies, then her preschool, then school was a right friggen mess in kindergarten....now I stress about friends/school/teachers....her future.....its just the way it is. Hugs x. I have some good websites for after diagnosis....so message me when you are ready. Be gentle on yourself.

 

[Midnight_Fairy]

The girls with asd that I know were all diagnosed before 7 xx

I didnt realise OT therapy was so expensive in america, we went private as it was more tailored to my son and she specialised in autism and dyspraxia. It cost us £150 for assessment and then £25 for each hour session after. We learnt my sons vestibular-system was very out of balance and ways to help this.

I hope you manage to get some answers soon, it can be a very hard journey, especially when you are left waiting for answers xx

 

[Tiff]

It would be free if we got a diagnosis. Or whatever money we put out we'd get reimbursed.

To do privately, it'd be $700 just for the initial assessment. $250 each for her gross and fine motor skills assessment, the private OT will do food stuff as well but that isn't an issue for us.

Then its $140 an hour.

Sandi, I'm so sorry I keep hijacking your thread. We should have a support chat thread or something!

 

[AP]

Feel free Tiff, I'm learning stuff here!

 

[JASMAK]

It would be free if we got a diagnosis. Or whatever money we put out we'd get reimbursed.

To do privately, it'd be $700 just for the initial assessment. $250 each for her gross and fine motor skills assessment, the private OT will do food stuff as well but that isn't an issue for us.

Then its $140 an hour.

Sandi, I'm so sorry I keep hijacking your thread. We should have a support chat thread or something!

We got $6K a year until she turned 6. Now we get $4K??? We never use it all. Basically, you hire whoever...someone to train (Behaviour Analyst) and behaviour interventionists, who are like teachers. They fill out the government paerwork to get paid mobthly...you sign and have to allocate the $ to who and how much. You can do that for speech an OT too. I worked on speech primarily, because M was nonverbal. But, we did hat on the side of her regular BI therapies...where they worked on a bit of verything, including toileting, speech, writing, reading, vocabulary, etc. you can also use a portion of your $ for training and apprved equipment/toys for therapies. Getting all this into place takes alot of ongoing work. If you ever need help, let me know. There is alo a bunch of dissability paper work hat you should do right away for tax credits and monhly dissability benefits.

 

[Midnight_Fairy]

Things my son have benefited from include: trampolines, horse riding (specialist disibilty lessons) swimming lessons (1:1) and climbing, all have helped calm him down.

I was also told drinking from a straw helps balance the vestibular system so now after school first thing we do is get him a smoothie and straw before we chat else he goes into meltdown lol. It works if they are getting irate.

 

[Tiff]

Thank you Jasmak! I wonder if that's the same as the UCB that stops once they turn 6 as well? Ugh, I so want OT for her. She can't handle transitions to anything, bed, someone else's house etc. She'll be okay if we heavily prep her for the change, but if something happens spur of the moment (life does that!) she loses her marbles.

It took her 8 months of weekly Resource Teacher playgroups for her to be okay enough when I left her there. Poor thing would scream her head off.

MF - That's really interesting! Claire has a massive oral thing (for lack of a better word), she's always putting stuff in her mouth. I always thought that would end at the toddler stage but I have to watch her like a hawk and make sure she doesn't eat whatever it is she has in her hands.

Ugh!!! Just today she had a chunk of her hair in her mouth, and she literally chewed off a big piece of it and tried to eat it! NO idea why she sucks/eats her hair, she'll frantically pull in it to try and soothe herself or she'll suck on a piece and eat it.

I was told OT would help with that as well, give her other ways to regulate herself. Ugh, I don't want to wait any longer!

 

[Marleysgirl]

Everything goes in my son's mouth too - except food! He refuses to self-feed and will only eat one flavour of pouch. But non-food goes into his mouth or gets licked no problems.

We recently got him to lick chocolate. That was a fantastic step, even if he then dropped it on the floor.

 

[AP]

Right I am back from an OT and speech appointment, the ladies have been assessing her development for a while.

DH brought up the autism referral again. The ST started by saying she felt Alex had some traits but from whats shes seen and compared to other children, she doesnt feel its the case, but will still write up a report and refer her. I stopped her, and told her "I get the fact thats she's a girl, and it's different right?" She agreed. We went on to discuss alexs throwing up, in detail and I found she began to reassess her opinion, I could tell with the questions she was asking about her eating habits and fussiness, and how she plays with food and refuses things.

This will be a fight , i know. I told her about the recent headbutting, she headbutts doors, walls, so hard, randomly, and pinches people.

I am sick of people trying to make out this is normal, it was fine when i didnt know any other way but I have Tori now and I see the great difference.

They seem to have it in their heads alex is a social girl, when in fact she hides in cupboards, bedrooms , corners and under duvets from everyone, barely acknowledges kids when we are out.