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Struggling


 
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** Hannah's mom ** UK
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PostPosted: November 05 2007, 7:47 PM    Post subject:
Struggling
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sorry if its long

I'm really struggling with Hannah. I guess that the last 2 support group meetings I've seen other kids there that are 2 and speak more than Hannah and they acknowledge their parents.

Hannah doesn't even say mama or dadda

In fact she is getting worse again. We are not getting any bye byes now, which was really going well, she always used to do bye bye to the kids at school, now it seems to have disappeared

It just really crushes me to be trying to support others when inside I am fighting a battle that is killing me

I am sitting here with tears streaming down my face, and I am posting it the dual diagnosis, cos I don't want to make a big fuss really I don't but I just don't know where else to bring my feelings except to the dual diagnosis

I ventured for the first time over to the brags forum ( as I feel so guilty not to be celebrating everyones achievements and I really want to ) but just found it too difficult. I watched abit of Matts video and just had to switch off as I couldn't even imagine Hannah doing a puzzle

I feel like I have failed as a mother to her and I haven't done enough. I wish I could do more and yet feel like every spare hour of my day is filled with everything else.

This weekend at our support group fireworks, there was a child with verbal dyspraxia but even they were able to nod their head and shake their head as they knew what was being said to them

I just don't see Hannah making any progress and I guess I'm finding it hard to deal with right now. Mark is away alot ( he has just come back fro m the US ) and he is so out the loop with all that happens with Hannah I really don't think he appreciates how delayed she is and how much it gets to me.

OK thanks for listening to me pouring out my heart and feeling sorry for my self

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Jo mummy to Hannah (DS ) who was 4 in July 05,Rebecca who was 3 in Jan 07 and Rachel born 6th April 2006


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helandy.cop
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PostPosted: November 06 2007, 5:39 AM    Post subject:
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Hey Jo

What can I say, apart from we empathise. We've all been there, or still are there. Autism's crap and just gets in the way of everything.

There's no platitudes anyone can offer you. I can't say Hannah will ever say mum or dad - our 2 older role-models on here are non-verbal. But from what I know of Hannah, unless she's significantly changed, she gives AMAZING hugs, she wants to interact and that's something you mustn't lose sight of. She wants to be in your world ... at least for some of the time.

Autism is a fascinating, horrible thing.

My Matt, your Hannah, they've both got it but they couldnt be more different! Yes Matt is really good with his puzzles, but unlike Hannah, he doesn't try and mimick words, he never says goodbye, he would never initiate a hug and most of the time would push us away if we gave him one. Matt can't cope with crowds of people and screamed all the way through those 5-7's meetings at New Wine, whereas Hannah loved them.

What I'm trying to say is all our kids have their own strengths and weaknesses. Matt's is his puzzles, and his great memory. Hannah is an incredibly loving little girl. And she is learning, albeit slowly. Both have a right bad temper when they want to. They are so different. Hannah causes you so much heartache because of the things she can't do, and ditto Matt with me.

I just re-read your post, and you inferred in your post that Hannah doesn't acknowledge her parents - is that a noticeable change that you've spotted recently? If so, and you think she is significantly regressing, then perhaps it is time to seek out an official ASD diagnosis, so she can get all the extra help she needs. Watching your child regress, watching skills they once had just disappear .. it's heart-breaking. There's no answers why, and nothing you can do to stop it. Just know we've been there and will support you through it if that's what's happening.

You can't be superwoman. I used to beat myself up that I wasn't doing more to help Matt's development, especially when he was losing skills and I was trying so hard to help him. Sometimes I still do. All that BIBIC stuff - I've done possibly twice since the assessment. I know it's crap, but fitting everything else in as well as giving that time every day for Matt, it just doesn't happen. There is no switch you can just flick to make Hannah start talking and developing. You may see little progress in her at the moment, but I know you've seen some in the past. And hang on to that. Our kids are notorious for doing nothing for ages and even losing skills, then just having a huge development spurt and doing everything at once.

Last thing, I'm so with you on the support thing. I also run a support group, and sometimes it really hurts seeing the little boys at 2 1/2 who are just like Matt were - interacting, signing, talking, etc. Adn kids his age who were once so behind Matt now being way ahead. Seeing Nadia, especially, is hard. And sometimes I can't do it. And that's fine. It's OK to be sad, and feel like you can't cope. For me, it's getting easier though. But at the same time, I've decided I can't do all the supporting. It's not fair on me. I've got my own needs. So yesterday I approached my local children's centre and asked them to make a referral for me to get some support/counselling for myself. And I'm now just waiting ...

So look after yourself. Give yourself a break - emotionally, but also physically. It's necessary. And will help you be a better mum. Hope that's a help in some way ...

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Rachael Kinza (25/07/01), Matthew Isaac DS-ASD (14/06/03) and Hannah Cerys (14/06/05) - my gorgeous kids!





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sarahuk2
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PostPosted: November 06 2007, 6:35 AM    Post subject:
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((((((((Jo)))))))))) - just wanted to pass on big hugs and sympathy - you are so amazing at supporting but it is true that you don't always get the support you need back. When I saw Hannah at the fireworks I was struck that she was joining in - the jumping on children, and she was watching the fireworks too. She was watching and taking everything in. I didn't really notice what other kids were saying because it was so noisy but it is hard, whatever your own child is like, hearing how much better another child is doing. I was talking to Anna about Eliane, who like Immy has just started school - but she is on a different planet to Immy in terms of ability, and it is hard to be reminded of that sometimes.

I think that we all have times when we find it hard to deal with what we have got on our plates, and I guess for you as Hannah gets older it must get more difficult. If you ever want a chat or to meet up, let me know - I am here and I am free most of the time.

Sarah

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ciarrasmom
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PostPosted: November 06 2007, 8:36 AM    Post subject:
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Hey, I just peeked in. I wanted to just acknowledge your pain and tell you we love you, and that I wish desperately I could help you all who have this damn dual diagnosis. It isnt fair, it sucks, actually. I just wanted you to know that I think you are an awesome mommy.

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ecki
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PostPosted: November 06 2007, 9:02 AM    Post subject:
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{{hugs}} Jo. I know, the autism sucks. Some days it hits you just how different your kid is from other kids with DS. For me it was at Kayla's school's Halloween party. I was just devastated because it really struck me just how different Kayla is from even the other kids in her severe disabilities class, some who have just autism. And of course our neighbor Erin, who has just DS, is in the integrated preschool class and watching her be practically at age level makes me insanely jealous sometimes. It's like we got hit with a big double whammy and it's just not fair!

It's frustrating. I never imagined Kayla would be like this, be SO delayed. I figured with work and tons of love she'd be able to be like "normal" kids. And it's so hard to acknowledge that she just won't be. And she won't be like the kids with just DS or the kids with just autism.

I was complaining to my MIL about Kayla being in a non-verbal class. She just looked at me and said matter of factly, well, Kayla IS non-verbal. Get over it and accept her for who she is.

And that's the hard part, accepting that autism part, which we would all take away from our kids in a heartbeat. I can deal with the DS. Autism changes EVERYTHING.

Anyway, I totally understand your frustration and heartache over Hannah's delays and lack of progress. And when skills disappear and you wonder if they will ever come back. With Kayla, I found the best way to deal with all those emotions is to live in the moment. I can't think about the past, what she used to do. Or the future, worrying about things that she may never do. All I can deal with is NOW.

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** Hannah's mom ** UK
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PostPosted: November 06 2007, 9:49 AM    Post subject:
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I am sitting here in tears reading your wonderful supportive posts

thank you for sticking by me and allowing me to get it all out

thanks Helen for pointing out Hannah's strengths. I feel blinded at the moment and just can't seem to get what she can't do out of my mind. I guess that its hard with the support group thing that I want to be a support to families cos I'm so fine with the DS and that is not the problem. I want to try and portray that to new parents

its just the autism that sucks and at the moment that is what is killing me

I hate having a pity party, I hate feeling like this, its been building up for a while now and I always seem to get it this time of year, right near to christmas looming

I am dreading the support group christmas party because of all the kids and how well they will all be doing and the younger ones who can all talk ( the older ones don't affect me as much. but the younger ones really get to me because they seem to be able to do so much more than Hannah and thats where I feel I have failed her.)

Sarah, I may well take you up on that coffee, let me know when you are free.

I want to ( and I am I think ) putting a brave face on, but inside I feel like I am dying


Sad


thanks for listening and supporting me

you guys rock

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Jo mummy to Hannah (DS ) who was 4 in July 05,Rebecca who was 3 in Jan 07 and Rachel born 6th April 2006


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Please visit Hannah's webpage read all about her journey
Hannah's Video


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Tom
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PostPosted: November 06 2007, 10:18 AM    Post subject:
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Down syndrome is a breeze. Down syndrome is a pleasure. Parents who think Down syndrome is hard need a good swift kick in the ass. Autism is hard. Autism is draining. Autism sucks. Kids with Down syndrome and autism are kids with autism. The Down syndrome is a minor issue.

That being said, have you tried medications? Have you looked into ABA? I gave Helen a book on ABA... would you like a copy? Send me your address and I'll get it to you. We have seen HUGE improvements in Mikey over the last couple of years. He works with an ABA instructor in the house for six hours a week plus they use ABA in his classroom at school and it has made him so much better, so much more like a little boy. He still has lots of autistic behaviors (stimming, obsessing, hitting) and they are very tiring for us but we see the little boy trying to communicate with signs and with his Dynavox and giving us hugs and love and that makes such an incredible difference.

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pmjc48
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PostPosted: November 06 2007, 10:39 AM    Post subject:
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Its very hard when you read all the stories about how well all the kids on this site are doing when yours isn't. Believe me I KNOW, Nicky is 20 and is one of the very less able kids here. He too used to wave bye bye and had a couple of words but he has neither waved or tried to speak for years now. I believe I have now come to accept his limitations but I would just LOVE to hear him call me 'Mum' just once but its not going to happen.
One good thing, I suppose, is that he doesn't know what he is missing and doesn't say he wants to have a girlfriend or to get married or to drive a car unlike my friends son, Jamie, who is 22 and has DS. Nick is very happy in his own little world and sometimes I think I try to push him too hard into joining our world.
He is also quite a solitary young man and loves to spend time alone with his music on and playing with his toys in his bedroom but my friend reminds me thats what lots of boys like to do DS or not!
One thing I have found that he got older he has far more eye contact than he had when he was little and is more affectionate now, he doesn't know how to give a kiss but when I say 'Give Mum a kiss' he comes over and offers me his cheek for me to kiss him, sometimes with a smile on his face too.
Try to keep your chin up and focus on the things Hannah can do not the things she can't do. When I do that I am always amazed just how many things Nicky can actually do Very Happy


Last edited by pmjc48 on November 06 2007, 12:35 PM; edited 1 time in total
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** Hannah's mom ** UK
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PostPosted: November 06 2007, 12:28 PM    Post subject:
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Thank you thank you for all your words of encouragement

Yes Tom I would love that book and I'll PM you my address, you are right the autism sucks big time. I have no issues with the DS I just wish Hannah had ONLY DS like you say it would be a breeze.

Thanks Pam for your encouragement. I keep looking at the positives, and I guess that when its just me and Hannah I find it easier to do that

its when I am with other children with DS that I start to look at ( and I know thats wrong of me, I know it ) the other children with DS and keep saying I just wish that Hannah could do that.

Please someone give me a swift kick up the backside too, I think I need it to get out of my pitiful state Rolling Eyes

I am sure that I can get through this. I am grateful to everyone on here as without your support I would be a crying, quivering wreck by now. Your support and encouragement really does mean the world to me, I can't thank you enough for standing by me in this sorry state ( and if there are any spelling errors I apologise too, as I really can't see half of this with all my tears, the emotional person I am )

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Jo mummy to Hannah (DS ) who was 4 in July 05,Rebecca who was 3 in Jan 07 and Rachel born 6th April 2006


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Please visit Hannah's webpage read all about her journey
Hannah's Video


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momofrussell
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PostPosted: November 06 2007, 9:42 PM    Post subject:
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Oh Jo, I want you to fly over here and have a nice drink with me.... and I'll give you a BIG HUG and we can commiserate together!? LOL

I can't say much more then what is already said. I know when *I* have the moments you are having I too feel so SILLY for having the pity parties... but we have to have them and get them out of our system.

I agree that Autism is DRAINING... and I too struggle with the positives because I tend to focus on all that Russell "can't". I try not to and I am the first to admit I do it, but it happens.

Many hugs to you Jo! Let it out girl!!! Just let it out! Wink

A.

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Tarka25
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PostPosted: November 07 2007, 5:49 PM    Post subject:
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Have you thought about having a thorough eval done at Downs Ed?
I know that they would be very willing and able to help.

You are so supportive and a tower of strength to others, it is so sad to see you are feeling so helpless. Hannah is a sweetheart, try to take strength from the beautiful little person that she is, know that even though she can't vocalise it, she loves you so much.

If you are ever in my neck of the woods, I'd love to take you for a coffee!

And yes I do pop over to this board from time to time as I'm still not convinced all is totally well with O, he hasn't made any forward progress that I can see in communication in the last year, no regression, but no progress either. I know that his last report was Overly positive for the purpose of going into his statement, The LEA just love to weasel out of full provision.

Big hugs to you!
he probably only has 10 words and 5 signs,

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kayzac
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PostPosted: November 07 2007, 7:56 PM    Post subject:
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Jo we Love you!!!! I know so where your coming from, Katie acknowledges nothing really, she has her own little world, but she is happy and smiles all the time. I wonder why sometimes they have her in kindergarten? No words at all, never have heard any. she has a great growl!!!! Were going to try the ABA program at school and were going to work with a behavioral specialist. I feel your pain, I wonder sometimes if I do enough and I have wonderful friends too.Katies extent of doing anything is watching Barney and rocking in her chair. Your not alone my friend.

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** Hannah's mom ** UK
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PostPosted: November 08 2007, 2:02 PM    Post subject:
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thank you thank you from the bottom of my heart for the support here my friends, it really does mean alot to me I hate having my pity party especially when we have got sick kids about or other people have had other tragedy in their lives I feel so guilty for feeling like this but you know its just good to be able to talk about it and for you guys to listen to me and offer your support

Today I went into school and saw the school special needs co-ordinator ( senco to the UK'ers ) and she seems to be on the ball - she is a new one - the last one was useless

I have told her that I am getting a book about ABA and she said they will look at it and see if they can do anything in school to help Hannah. They have set out a little plan for Hannah to help her access the curriculim and also they are going to revisit PECS with her as she has been trained in PECS which is good as no one has tried who is properly trained before, so who knows

Mind you I tried not to cry when she said that Hannah is classed as severely delayed and not moderately delayed. It was hard to hear cos I guess you try and be in self denial about it all the time, but in my heart of hearts I know she is severely delayed but I blame the autism not the DS for that.

I made sure I held it all together and when I got home just had a big cry in the toilet so the kids couldn't see me lol and then once I got it out my system, got on with the rest of the day Rolling Eyes


Her grandma fetched her from school today and took her to her speech and language therapy so we shall wait and see how she got on


thank you once again from the bottom of my heart for your continued support

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Jo mummy to Hannah (DS ) who was 4 in July 05,Rebecca who was 3 in Jan 07 and Rachel born 6th April 2006


My beautiful girls



Please visit Hannah's webpage read all about her journey
Hannah's Video


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LeeJo
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PostPosted: November 08 2007, 3:38 PM    Post subject:
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I'm late chiming in here, but the couple of times I've popped into the brags section, I haven't brought myself to read anything. I could not bring myself to finish the book, "Gifts" because the only thing I got out of it is the dismal understanding of how different my son is even from most kids with DS, and how much he used to be like that, when he was 2 I could have been one of the writers of that book!!

Jo, you are not alone. I feel so alone in our local community, but here I have found a haven, where my son is like other kids, I certainly have never had that experience!! We are few and far between, but we are here, and we are the same.

No you are not alone. Here we are with you, your Hannah is not alone either!

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jooniper
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PostPosted: November 08 2007, 10:04 PM    Post subject:
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Jo, and all of you parents really, I just want you to know how much I appreciate your honesty, your perseverance with your kids, and your love for your kids. As a mom of a little one still, I am just waiting to see if Autism is going to be in the cards for us or not, but reading about your journeys helps me to think that if Autism will be something for us to deal with, that it will be a pain in the ass (Thanks, Tom, for saying it so astutely) and that we, like so many others, can learn to deal with it. I admire you all, and am glad there is a place like this to come to for you and for what I glean from it. Thanks!

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