So Confused.. Seeking Information . ..

iVillage Member
Registered: 11-08-2005
So Confused.. Seeking Information . ..
7
Sat, 01-17-2009 - 3:42pm
Hello .. Im new here but not to the Ivillage..I have been on the Aspergers board, Speech board and the Devel. Delay board.. And now Ive come across this board........We are rasing our 3 yr old granddaughter since almost birth.. She has been diagnosed with ODD< Developmental coordonation disorder < and speech and language disorder.. Back at 2 she saw an OT and had mentioned sensory issues but at that time this whole journey was begining and everything else in the meantime errupted....and got dx'ed .. The more I read about this , the more it seems like her.....So much of it tho seems like so much of her other disorders!! Its so confusing to me ! I never went thru this with my own kids.. How do you even know what you get as a DX is really it, when it could something else .. or can it all be interrelated? ... Im overwhlemed.... I have spoken to her old OT and am thinking of setting up an apointment.. I just dont know how to fit that in with the ST and PT and Pre school !
How did any/all of you come up with this knowing it was for sure what your child had... I saw a Ped. Neurologist who dx'ed Skye with what she has.. I am on a waiting list for a Ped. Neuro developmental dr but wont get to him till summer sometime .. Am I on the right track here? Will OT really help... I honestly do not get this whole sensory issue thing.. I dont get what she has been actually diagnosed with ...theres almost too much out there to read about that Im confusing myself here and second guessing myself.. all i know is I want the best for her and its very obvious there are things not quite right for a child her age .. she will be 4 in August ... I would love to hear for any of you about your expericences.. any other dx's ... how it was dx'ed .. and how OT does actually help ...

Noelsiggy-1.jpg picture by nymetsfanatic031

iVillage Member
Registered: 04-19-2006
Sun, 01-18-2009 - 9:21am

SPD can be confusing! I have been dealing with it for many years with myself and my children and even I don't understand it all. I do know that yes OT has helped tremendously. I went from having a sensory seeker to having a child who can somewhat focus. My oldest son is a sensory avoider and has not had as much treatment and hasn't made as much progress. The best book for SPD parents is The Out Of Sync Child. Also I wonder what some of your granddaughters symptoms are. Oh and may I say you should be commended for raising your grandchild. As a person who was raised by their grandparents I have to say thank you. You have no idea how important what you are doing is!

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iVillage Member
Registered: 11-08-2005
Sun, 01-18-2009 - 10:55am

Thank you for your reply and on the comment on rasing my granddaughter.. I shudder to think where she would be if I didnt step in when I did .. My step daughter was not ready to be a parent, proven by what she did to her child before she was even born :(


She has many symptoms.. some of which are a result of her cooridination disorder.. low muscle tone, horrible fine and gross motor skills..

Noelsiggy-1.jpg picture by nymetsfanatic031

iVillage Member
Registered: 04-19-2006
Mon, 01-19-2009 - 8:41am
It's definatly worth looking into. It sounds as though she may have some sensory issues. I KWYM about finding the time. My 2 yo has OT, A vision teacher, speech it works out to be 5 therapy sessions a week and now they want to add more on the speech front UGH! GL with everything and please keep us updated :)
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iVillage Member
Registered: 06-01-2006
Mon, 01-19-2009 - 7:07pm

hi ,


may i know what exactly a vision teacher does because my daughter

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iVillage Member
Registered: 04-19-2006
Mon, 01-19-2009 - 7:16pm
Her vision teacher isn't for SPD. She has nystagmus, estropia, hypermetropia and astigmatism (I think I spelled everything right). Her vision teacher is great and does work with colors, lights, and basically anything to get her to focus and see what her capablities and limitations are. It was her vision teacher who gave us the best prognosis for her sight when she was still a baby and she was right :)
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iVillage Member
Registered: 03-10-2004
Wed, 01-21-2009 - 9:22am

I agree with you, all this can be very confusing and overwhelming. You are not alone, many of us feel this way. You asked "How do you even know what you get as a DX is really it, when it could something else .. or can it all be interrelated". Yes, they all can be interrelated and I am convinced that the doctors don't always know exactly what is going on and they DX it the best they can. I have been posting on this board for a while now, I also check out the ADHD board occasionally and the PDD_NOS/Aspergers board too.

My son just turned 8 and is in second grade he has an IEP and gets OT and Speech. When he was 3 an OT diagnosed him with Sensory Integration Disorder. At 4 we had him tested by our school and at Children's hospital. He then started at the city's preschool with an IEP. The original Children's testing showed language, communication and developmental disorders. Last March at Children's they diagnosed him with ADHD. We just went through some re-testing at Children's in October and the doctor who did the testing thought he has PDD-NOS in addition to everything else. We just went back to Children's last week so another doctor could give him the ADOS (Autism Diagnostic Observation Schedule) test. She to agreed that he has PDD-NOS. It is not all cut and dry and even the doctors have been a little puzzled by it and he doesn't fit exactly into and one DX. Most kids with ASD have sensory issues and some of the stuff overlaps with the ADHD as well. I am still confused by it all and still figuring it all out. I am just trying to help my son as much as I can and find the things that work best for him. OT has definitely helped him, he has been going to OT since he was 3. His other big problems are with pragmatic language and social skills. I am lucky that his school and teachers so far have been pretty good. They also use social stories with him in speech and he goes to a social group at school once a week. He goes to OT for help with motor skills and for the sensory issues. They also have a lot of sensory aides in the classroom - fidgets, pencil chews, weighted vest and lap pads, and more.

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iVillage Member
Registered: 10-03-2008
Thu, 03-05-2009 - 12:23pm

Patty,


I just read your response and it sounds so much like us.

Stacy

Proud to be Jackson's  momma!           &nb