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+--- Thread: Newbie - Parents of Emma (/thread-585.html)
Newbie - Parents of Emma - emk.charles - 04-09-2012
We're parents of a 6 year girl Emma who has SPD. We're from Brisbane, Australia and Emma was assessed in 2009 by an OT.
We have basically been left to our devices. We were told by the OT that we needed to learn Emma's road map and go from there as hers is different to ours, handed 2 sheets of paper with basic info on SPD and that was that. It was and is frustrating.
Emma was born at 27 1/2 weeks.
We sensed that there was something different with Emma when she was about 2 years old and we still do. She was licking walls, eating shoes, walking on toes. She had a thing with tags on toys that she had to rub them constantly. She was delayed with her speech.
It took us nearly 12 months to get to see an OT and ST via the public system.
She never sits still and any form of motion will heighten her senses to such a level that it is hard to settle her down to a manageable level. She lines her toys up in a row and even presents at Christmas time in order of the colours on the wrapping paper.
She's a very picker eater - been to see a dietitian and have an appointment in 2 weeks time with the Feeding Team at the hospital for a multidisciplinary evaluation of feeding and swallowing skills.
She is a bright and friendly little girl. Started Prep this year and doing very well with learning - although we are having minor developmental delays with fine motor skills (due to being a premmie).
I know that as a Mum that I feel frustated that I can't manage her as I haven't learnt any skills to help her out, and that I feel that I'm letting her down. I tend to find that I don't or won't go out with Emma by myself without Michael (my partner) with me, as she is too hard to handle with all the stimilus arround.
There is only myself and my partner - so no support base, there are no family members who live close to us, they are in other states of Australia.
We found this forum by accident, and so glad that there is a place where we can go and share and learn from one another.
Kerry & Michael
RE: Newbie - Parents of Emma - Jaffa - 04-09-2012
Hi Kerry,
I am fairly new to this site too but wanted to reply to your post as I know it is a daunting task being told your child has SPD.
This site is brilliant. Very helpful people who have SPD and can give you an explaination of what they feel when things go wrong. It has certainly helped me. I have a 5 yr old boy with it and we live in UK. We don't have much info over here about it either.
My child at the moment won't wear shoes and only some socks, he is living in wellies. He has major meltdowns where he would just scream but on the odd occassion he can now tell me what the problem is and we deal with it.
It is a life long condition but I have been told that with time they learn how to cope and get around their problems. Keep posting, this is not a fast site but genuine people with lots of advice to help.
Jaffa
RE: Newbie - Parents of Emma - Heather - 04-09-2012
Hey Kerry,
I just wanted to applaud you for taking the time to share your daughter's story. I myself have 2 daughters with SPD (I have 3 children) so I know how hard it is, especially when you are left to your own devices. This is a wonderful site for help. You sound like you and your partner are on the right road, but, emotionally it is tuff as you know. I have wanted to just scream at the top of my lungs at times with frustration from dealing with Dr's and people in general with their lack of understanding. I have found being strong, and standing your ground and fighting for what is best for your daughter is the best you can do. This site has loads of info to help. One of my daughters with SPD is Hyposensitive. She is doing amazing now. She has been receiving OT since she was 18 months along with speech and physical. My youngest is 23 months and has SPD with Hypersensitivity. Her case is very severe, but she is starting to progress. There is hope, even if it doesn't seem like it. Emotionally SPD plays a huge emotional blow. Stay strong, now you have us on this site to turn to.