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Very new here, and after your opinion and advice please!
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love05 Offline
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Posts: 2
Joined: Oct 2012
#1
Very new here, and after your opinion and advice please!

Hello,
This is my first time on an SPD forum. I am 28 years old and writing regarding my son who is 2 years and 3 months. He was born at 31 weeks and everything has been a struggle, from day one. Only now that I have another child (a 34 weeker, who is 8 months now) that i really understand HOW hard it was with my first! I suppose because I knew how lucky I was to have him, I managed.

We have recently had him assessed by an Occupational Therapist. Now we are in Australia (if that makes a difference) and the waiting list for this to be done publicly was over 12 months. So we have paid for a private assessment. We see his private paediatrician (the Paed who has cared for him since he was born) in 2 months. I would like to share snipets of the OT report and see if you believe my son has SPD. The OT won't diagnose, it is up to the Paed, but she has said he definitely had "sensory processing difficulties".

Here are the highlighted comments:
-.....processes all types of sensory information in a different manner to his peers, which impacts on his self-care skills such as feeding, social participation and attention to learning tasks
-.... has difficulty with planning and ideation which impacts on his ability to cope with changes in routine, transitions and unstructured time
-....play skills are impacted on by difficulties with sensory processing, planning and ideation and delayed communication
-....difficulty using toys appropriately in structured or pretend play when left to use these toys independently
-...experiences issues with proprioception
-....displays visual and auditory sensitiviy
-difficulty with visual and auditory filtering
-light touch (tactile) sensitivity
-fight/flight/fright stress response
-low registration of movement (vestibular) stimuli

Very interested in what your thoughts are, if you want a list of behaviours that we gave to the OT I am happy to share but it is quite lengthy so I didn't want to bombard you!

I am also hunting for some good books to read, to understand SPD myself a lot better, so I can explain it to others, and also some books to help me, help my son.

Thank you so much!
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heather40 Offline
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Posts: 210
Joined: Sep 2012
#2
RE: Very new here, and after your opinion and advice please!

Hi! I have an 8 year old that was diagnosed at 1 1/2, all I can say is good for you for the EI! A great book is out of sync child! I just picked up a couple at a conference, have to get time to sit and read them! My son has a hard time with changes in routine, I do let him know ahead of time what we are doing, but life is not scripted , so I make him aware that things can change. He used to have a hard time playing by himself, he used to line up his toys till they were perfectly straight, which to him never were. The OT said he has to be made to play other ways. Now he can play make believe with his lego guys has a spectacular mind! Picture cards are great for routines, I jsut saw Temple Grandin and she suggested for kids with visual issues glasses with a pastel hue. Of course your child is very young so that might be diffulcult. AUditory I keep headphones in the car all the time. He has gotten better with like going to the show, but a parade or something he has to wear them! Touch, my son would't even allow you to hug him, though the brushing technique he over came that, but there are stil certain fabrics that he cannot tolerate. He is a sensory seeker and requires weight! HE uses a weighted blanket, likes to lift heavy things, very impulsive, that is the toughest thing now. He used to run away all the time, he doesn't now, the weighted things helped with that. I know once you get a routine and find ideas to help you out you will be ok. There will always be something, but you will learn a strategy to get your child back on track! CHeck out the facebook page for this group it is awesome they have tons of great ideas and resources!!! We are here for ya!!!!
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LAC1961 Offline
Regular

Posts: 299
Joined: Jul 2012
#3
RE: Very new here, and after your opinion and advice please!

It seems hard to believe they didn't diagnose SPD based on that report. Here is a link to a checklist for SPD from sensationalbrain.com:
http://www.sensationalbrain.com/pdf/SB-sensory-checklist.pdf (sensationalbrain.com is one of my favorite websites)
The three top books I've read since my daughter was diagnosed in July are:
The Out of Sync Child by Kranowicz
Sensational Kids by Miller
Growing an In-Sync Child by Kranowicz and Newman
Each of them approach SPD from a different view point, ie. diagnosis, treatment, home care.
There are many excellent resources online that I have found. I've found much encouragement from spdbloggernetwork.com.
I've found the following list of 99 great sensory activites for any child at:
http://mommypoppins.com/ny-kids/99-sensory-activities-for-any-child
Also love the following ideas found at this site:
http://spdsupport.org/articles/20-keep-it-simple.shtml
And last, but not least, as Heather mentioned, heavy lifting, is integral to keeping SPD kids from getting out of hand.
Hope this helps, and welcome! Finding a site where we all understand what each other are talking about is often what keeps me from crying myself to sleep.
(This post was last modified: 10-08-2012, 11:06 PM by LAC1961.)
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heather40 Offline
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Posts: 210
Joined: Sep 2012
#4
RE: Very new here, and after your opinion and advice please!

Talk about crying! My poor boy came home from school today so emotional, the exact opposite of what he usually is. He was thinking about things that happened three years ago and was crying about it like it just happened. Never know what to expect from day to day sometimes. I think it could be because he came home early this morning from his dad's house, was off yesterday from school for the holiday, he said he was knocked down in line at school today and got hurt. Ugh! So he is taking a well deserved break before we tackle the homework!
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love05 Offline
Newbie

Posts: 2
Joined: Oct 2012
#5
RE: Very new here, and after your opinion and advice please!

Thanks for your responses, I've been able to move my son's appointment forward to next Monday, so will pop back in here then and give you an update.I am looking into the above links and books, thank you Smile
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heather40 Offline
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Posts: 210
Joined: Sep 2012
#6
RE: Very new here, and after your opinion and advice please!

Thisis a book I just picked up at a Autism conference... 'Understanding Regulation DIsorders of Sensory Processing in CHildren" by Pratibha Reybe and Aileen Stalker . I have been jumping around from chapter to chapter but it is really good. IT is about management strategies for parents and professionals.
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LAC1961 Offline
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Posts: 299
Joined: Jul 2012
#7
RE: Very new here, and after your opinion and advice please!

(10-11-2012, 06:53 AM)heather40 Wrote:  Thisis a book I just picked up at a Autism conference... 'Understanding Regulation DIsorders of Sensory Processing in CHildren" by Pratibha Reybe and Aileen Stalker . I have been jumping around from chapter to chapter but it is really good. IT is about management strategies for parents and professionals.

I'm looking for it tonight! My daughter was on listening therapy from mid August to mid September and she was regulating her behavior beautifully. Then the OT found out they were violating a licensing agreement by lending the CDs to us and took them back. We've been trying to purchase them ourselves, but they're $500, so we've been asking the OT to consider lending them again. Her behavior has really deteriorated in the last month--lots of screaming, yelling, kicking things, throwing things. I think the listening therapy was so helpful. I'm going to get this book right away, though, and see what ideas are in it about regulation.
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heather40 Offline
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Posts: 210
Joined: Sep 2012
#8
RE: Very new here, and after your opinion and advice please!

Hope it helps, I have a couple others I have not had a chance to open yet. Everyday you don't know what it is going to be like. I have been on a rollercoaster since September, I am exhausted! He is on such an edge! The crying fits, then I get "Well you spoil him!" Uh, no I sure don't! I am just thinking of going back to picture cards, his behavior chart works for him, I am going to bed! lol Talk to ya soon!
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LAC1961 Offline
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Posts: 299
Joined: Jul 2012
#9
RE: Very new here, and after your opinion and advice please!

(10-09-2012, 06:57 PM)heather40 Wrote:  Talk about crying! My poor boy came home from school today so emotional, the exact opposite of what he usually is. He was thinking about things that happened three years ago and was crying about it like it just happened. Never know what to expect from day to day sometimes. I think it could be because he came home early this morning from his dad's house, was off yesterday from school for the holiday, he said he was knocked down in line at school today and got hurt. Ugh! So he is taking a well deserved break before we tackle the homework!

Very interesting observation. My 5 y.o. daughter will often talk about things that happened several days to several months ago as if they happened today. We adopted her 2.5 years ago, and she has never mentioned her birth mother. Then the other day she said, "Can you sing me the song about the bird?" I explained I wasn't sure what song she meant, but maybe I would know if she told me who sings it to her (day care, teacher at school, etc.). She said, "the girl whose tummy I came out of." I nearly died on the spot! I don't know if this is related to the SPD and the short-circuits in the neuro system or just normal 5 y.o. behavior.
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