DownSyn Forum

[Jenell Allen]

Thank you all for you encouragement as we found out the difficult, but suspected news that our little girl also has autism. It was painful, but we know that now we are able to move forward now and get the help we need. Thanks to California they have free behavior therapy for children with disabilities. Because Tiana does not have severe behavioral issues we qualify for 5 hours a week of intensive therapy where someone will come her and work with her, if she ever needs more, we can get more. We also get almost 20 hours of respite care a month. I am also happy for the free diapers she will be getting and we will get someone to help us work on potty training. I am still hoping that someday my little girl will say mom, or I will even take "no" at this point. I want so bad to have a relationship with her, so this new journey for us begins and I'm glad to feel that I have friends on this forum to help see me through.

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[Helen]

I'm so pleased you're getting more help with Tiana, and that the option is always there for even more help if you do find more behavioural issues occur. I know Matt's behaviour has changed as he's grown older, so it's great you've got that 'safety net'. Matt was 7 before he started to sign (again) and it is so nice to have, like you say, that relationship with him. It felt like forever before he responded to anything other than rough play and swinging on his swing. Now he enjoys tickles and being stroked, and that's helped our relationship. Matt doesn't yet speak. He is 8 1/2. But I don't give up hope. He hasn't said 'mum' for over 5 years. Maybe he will, maybe he won't. And the same is true of Tiana. But keep hoping, keep working on your relationship. It will feel, so much of the time, that it's all give, give, give - sacrificial giving. But it is worth it. In having a child with autism you do learn to love unconditionally and with little reward. And it is a very special kind of love. It's not what you want. It's not what anyone wants. But, boy, does it change your perspective on life. I'm praying for you, that your gorgeous girl does one day talk. And I also pray that, just through being her mum, you will 'grow'. And that you can enjoy the journey, as far as possible, while you wait for your relationship to deepen. God bless. You're doing great.

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Helen

Mum to ...
Rachael, Matt - DS & Autism - and Hannah. My gorgeous kids!

[Tigger]

Wanted to reply so that you know that I am thinking of you and Tiana. We have a little girl in our community called Tiana who has a chromosomal condition - not DS - who doesn't seem to be able to speak and has other issues but she is beautiful and doing well

When I see her I think of you and Tiana. Sometimes I wish we had an emoticon for "hugs" because I would like to send you "hugs" from over here in Australia.

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Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

[Amy]

Wow. I need to move to CA. I want Austin to have 5 hours of Behavioral therapy. I'm going to do research about this in our state today!!!

I'm sorry about your news. I've been right where you are at and it's depressing and frightening. But, as you've already seen, having the official diagnosis opens doors for your child as well. May this new therapy help her and you have a relationship! Don't give up your expectations... just relax that internal time table we all have in our heads about when our child should reach milestones.
{{{{HUGS}}}}

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Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS