Thursday 3 March 2011

We all like to think

that our children are perfect. They are born full term, healthy babies and you count the toes and fingers and feel eternally grateful. As time pass, it inevitably turns out that none of us are perfect. We each have our flaws - some are just more visible.Some are more serious and some need to be addressed sooner.

For the last few months Hunter and I have been acutely aware that "something" is not right with our Little man L. On Tuesday the "something" got a name when we got the report from the Occupational Therapist that evaluated him - SID - Sensory Integration Disorder. It was almost an "a-ha" moment when she started to explain how it works and the typical symptoms. We are lucky that with some of the issues he has already started to integrate himself.

Having a tag to hang around the issue is really a catch 22 - not wanting to label your child on the one hand, but also having the knowledge to deal positively with your child's problems on the other hand by having a label to Google, by obtaining books and gathering information.I have always dealt best with situations where I can arm myself with knowledge. After a long discussion with the therapist, I feel extremely positive that we will move forward and will get the best treatment possible for our child. In fact, some of the simple directions she has given us have already improved the situation at home, making him a much happier child and giving the rest of the family a break - the last two months have really been tough for us.I am not expecting miracles, but am hoping for small wonders. He starts with therapy in a week from today. His school has welcomed the diagnosis and the information and has promised to work hand in hand on this road with us.

So anybody knows any blogs of kids with SID or have kids with SID?

26 comments:

  1. It is always so much easier when you know what you are dealing with. This is not as uncommon as you may think, and I'm pretty sure with therapy and your help he will adjust just fine.

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  2. Great that you have a name and now can read and explore of how to deal with it!
    Good luck!

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  3. Agree with the others, at least now you know what you are deaing with.
    Wishing you all luck!

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  4. Nothing I can say here that I didn't say in my email yesterday.

    I am sure that you & Hunter will deal with this as adequately as you can and the fact that the few changes you have already made, are making him happier, says it all.

    I'm always here if you need a shoulder, but you know that xxx

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  5. I think in a case like this the label is a good one - it helps you get the "help" you need!!!

    It will all work out just fine in the end :)

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  6. I hope the knowing helps things get easier.

    Hugs

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  7. I have been thinking of you the whole morning... It is a great change in mindset to be confronted by this. I have been reading a bit, because I don't know much about it.
    Here is some great advice (maybe you have seen it already?): http://www.sensory-processing-disorder.com/10-things-every-child-with-autism-wishes-you-knew.html

    Best best wishes!
    I feel a new "blog" brewing?

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  8. You will never label your child...you are much too loving for that. It is always a positive thing to know what you are dealing with so that you can handle it the correct way. Knowing that there is a way forward is always a good thing.

    You know where to get me if you need me...yes?

    xx

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  9. @MomAgain@40 We are lucky, he does not have autism. Not every child with SID has autism, although most autistic kids also have SID

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  10. in John 9, the passage begins:
    As He passed by, He saw a man blind from birth. And his disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

    God created Little Man L, in this way to bring Glory to Himself. This is God's perfect way of creating him...embrace the knowledge and praise God as you use His strength to get through it. Many prayers for you!

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  11. Knowledge is power. I don't know anybody with SID but one of mine has Aspergers. I won't say a diagnoses has changed our world but it has helped all of us cope with his slightly 'odd' behaviour.

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  12. It's the first time I read about SID and I Googled it as well. Sorry, I don't know blogs or spaces you can visit for this.
    Good luck.

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  13. I have never heard of this. I hope one of your readers will have a resource for you!

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  14. I do!!!! Go to Tertia's blog - her one twin (I think they're 6 now) has SID - and write to her there or on facebook - she is very helpful

    http://tertia.org

    I know exactly what you mean - terrible to label but on the other hand, it's also nice to know and you can deal with it.

    Still, I know you won't let the label define him because he is fearfully and wonderfully made.

    I would love to read more about symptoms and things you have observed in little L, when you feel up to it.

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  15. Hi Cat
    I understand your comments re: the label issue. It is a catch 22. But if it wasn't for that "label" you wouldn't know how to help him and accommodate his special needs. My ADHD son has a very mild degree of SID - his is mostly from a tactile perspective. He can only wear certain fabrics, no labels in his clothing (we have to cut them out), only elasticated pants because he can't cope with buttons next to his skin etc. It took years for him to finger paint and get his hands dirty and he still won't voluntarily touch things like play dough. I have to say that the OT has helped a lot and for the moment he doesn't need to go anymore. We still continue to brush his body at night and we will go for an OT top-up sorts if needs be. Tertia Albertyn's son has SID as well. She has blogged about it in the past and is very clued up about it so you could even email her if you have questions.
    Things can only get better once you know what you are dealing with. I always feel that it is much better to get diagnoses of any sort before they start Grade R because you have time to work through it. Believe me, you will learn to manage it in the best way possible.
    All the best.

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  16. Cat - I can understand that the diagnosis can be both scary but awakening.

    I think you know that I teach kids with Autism and deal with a lot of SID issues. Feel free to email me if you have any questions. I'm so glad they are quick to assist with therapy and suggestions and that his school is being so receptive to accommodating him. I'll try to send you a few links to some SID sites.

    One book that would be extremely helpful is called The Out of Sync Child.

    Good luck friend - don't hesitate to email me if you have any questions or would like some reassurance.

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  17. Hey Cat, I am running out the door but will email you soon. Hang in there, have a *label* is the first step but not the last - and SID is very manageable and many kids grow out of it (or learn to manage it) quite quickly. Vasbyt. xxxx

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  18. Oh Cat *massive hugs* No wonder things have been so tough. It sounds like you've got lots of fabulous help to draw on here!

    Carmen at http://momtothescreamingmasses.typepad.com/ has a SID child. I wouldn't say she blogs about SID directly all that much though.

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  19. I also like to know what I am dealing with, and feel better prepared for what ever it is when armed with informtion.

    I see Marcia beat me to it, but I was also going to direct you to Tertia's blog. She discusses it quite a bit.

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  20. You are such a family of love, you will deal with this as best you can...he is loved and that is all he needs right now....

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  21. My cousin's eldest (4) was also recently diagnosed with this. It's been an adjustment for his parents, but the help and therapy they're receiving has helped them a lot in dealing with this on a day-to-day basis.

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  22. Sending you a huge, big hug. I am glad to hear that you know what you are dealing with. My best friend has two special needs children, both with their own set of little problems. They have both come a long, long way because of the support and love she provides for them. You are a wonderful person and the love and support you have for your family will get you all thru this.

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  23. Hi. My 6 year old son has got it too. (New term is Sensory Processing Disorder SPD - my son is a 'sensory seeker' and unfortunately as it's not very well known in the UK, or not as well as in the USA and my native South Africa, his school does not seem to understand it very well and keeps pushing for a diagnosis of autism/Aspergers/ADHD which we have ruled out by two thorough assessments.

    Great books 'Out of Synch child' by Carol Stock Kranowitz, and 'Sensational Kids' by Lucy Jane Miller. Also great group on facebook 'Sensory Planet'.

    Prepare yourself for lots of ups and downs but be assured you are not alone and it does get BETTER. You may find that you have to educate yourself so that you can educate those who deal with your son. And you will come to LOVE OCCUPATIONAL THERAPISTS!!

    All the best
    Sue xx

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  24. Ok, so glad I finally found the time to read up on your blog... absolutely, we should talk. Will has SID along with autism and I am sure we could exchange lots of emails to help on another and I can give you tips, etc.
    Absolutely read The Out of Sync Child (the book Barb recommended). It has GREAT suggestions and there is another book to the series (I think called Playing w/The Out of Sync Child)

    Anyway, please feel free to ask away...anything you need.
    It helps knowing you aren't alone and you aren't crazy (and neither are our kiddies :)

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  25. I am not familair with any blogs or books either, but it looks like you have gotten some great resources from all these fabulous moms. I will be thinking and praying for your handsome little man!

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  26. I understand this very well - labels are at least helpful for getting the services you need, hopefully. I second the recommendation for the "Out of Sync Child" book.

    Our Alex, along with various other challenges, has some flavor of SID too, he likes to lay on his belly and rub his knees on the floor for sensory input when he is tired, and has various tactile problems with oral feeding.

    Every child is different, but they are ALL perfect, regardless of labels. :-)

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