Struggling with diagnosis

by Rebecca
(Ireland)

Hi


My 3.5 year old daughter ticks nearly all the boxes under the Social, Emotional, Play, And Self-Regulation Dysfunction heading.

We are in Ireland, and I guess professionals here have much less experience of sensory processing than in the US.

Our OT has 'tested' our daughter's vestibular functioning and tells us that since all is fine with that she cannot have a sensory problem. She told us that regulation difficulties would be a SYMPTOM of vestibular problems, which are at the root of sensory processing.

Can anyone comment on this? From what I have read this doesn't seem to be correct, but I need to make sure I am right before trying to get a second opinion.

The symptoms she has include: no sense of smell, not feeling thirsty, toileting problems (not feeling the need to go), and she does not react to pain or temperature as much as other children do. She has severe mood swings and can get upset over minor things to the point of not being able to stop crying. She takes herself to bed when upset and asks for the curtains to be drawn and black out blinds put up. She has good days and bad days, and very bad days. All of her symptoms are much worse when there is a change to routine, when she is tired, sick, or when I notice she hasn't had a drink or eaten for a while. As a baby she was always unsettled, screamed when getting dressed, had disturbed sleep, and never played with any toys. She has strong preferences regarding food textures. A big concern at the moment is the amount of time she spends being withdrawn, seemingly depressed, saying she is 'so tired' and refusing to engage in activities. Transition between activities during the day is a huge problem area, as is getting her to leave the house. She can also have very active days, when she does not stop talking and engages in highly creative imaginative play in her own world. She prefers to play with younger or older children, and although she is usually very sociable and confident, she is not good in group situations (hides under the table). She often avoids eye contact and has days when she is very distracted, fidgety, won't pay attention or concentrate.

Thank you so much for reading. We are desperate to get some help.

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Aug 17, 2012
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Sensory Processing Difficulties
by: Mary

http://thewritingowl.hubpages.com/hub/Sensory-Toys-for-Special-Needs-Children
My son has Autism and Developmental Delay he too has a lot of Sensory Integration issues. I have begun writing about it, new article on the link above. His senses all appear to be over heightened so he is constantly seeking sensory stimulation. As stated above the HSE Early Intervention Services don't give any help with Sensory Integration Therapy issues and it is pretty much down to parents to try and do what they can themselves or of they can afford it to pay privately. Yes the Sunflower clinic in Cork/Limerick are excellent and could also advise you on a home plan.They are also in Killarney in Co. Kerry one or two days a week as far as I know.

The situation for all special needs kids in Ireland is very bad, I have also written about this a number of times http://thewritingowl.hubpages.com/hub/How-to-accept-an-Autism-Diagnosis

Jul 11, 2012
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Sensational Kids, Kildare
by: Anonymous

Hi,

my son also suffers from sensory difficulties. I had loads of trouble trying to get him diagnosed through the HSE.

I brought him through the early intevention team and the OT agreed that he suffers sensory difficulties but because I got it checked so early they don't actually have any one to see him because of his young age. He was only two.

They sent me out a report stating that I had to find an OT to give him that extra input he needs.

Thankfully I found a place called sensational kids in Kildare. It is they only place so far in Ireland that deal especially with children who have sensory difficulties. They have a special gym and lots of other equipment to help children gain the extra input that is needed for their sensory difficulties.

All their staff have been trained in America and they are up to date with new methods. For instance, they use a brushing techinque on the children which helps reduce the need for hand flapping etc.

It is a charity company so it is cheaper then other places.

Their website is www.sensationalkids.ie.

Hope this helps


Jan 29, 2011
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reply
by: Annoymous

Hi

My son who is ten was diagnosed a year ago with dyspraxia and sensory processing disorder. Many of the symptoms you describe with your daughter my son exhibits. We could not get anyone in the hse to help us, even though his school were insisting he needed assessment. (I have to say the school was fab) We ended up going private to get the initial assessment done- because like you i always knew something wasn't quite right. He too struggled playing with his friends, got very tired, had temper tantrums etc. The place we utilized is called Atlas Training (Dublin) . Since his diagnosis and we have continued with the treatment with them- he has been given 3 hours resource time a week in school( although the school give him 4) his tantrums have reduced re markedly, he is now hugging people for the first time and tells us he is much happier. The early intervention team have accepted him, although still waiting for our initial appointment 6 months later.

My advise is go with your instincts and get a full OT report done by OT who is familiar with SPD
Take care

Sep 30, 2010
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build their self esteem.
by: Anonymous

The sunflower clinic based in cork/limerick is fantastic. Recommended to us by the dyspraxia association when our daughter started to show signs.

She was lost initially due to feeling the petit mal seizures she has was the cause for everything. I have spent alot of time with her finding what she likes and doesnt like and why. We work on doing the things she likes and finds easy and leave the difficulty upsetting things for now till she is more confident in herself. The saddest part of this illness is our childrens self esteem or lack of it. Impacting on all aspects of their life and often misunderstood as a bold child. We try to look at the world from her side more than making her fit perfectly in ours . She has improved in her moods and seems generally happier. She said everyone always gave out to her. What we know now is that she didnt hear what she was been asked correctly so she did what she taught she was been asked and became withdrawn when she felt she could never do what every one asked. to get your ruler out thinking thats what your asked when it was your pencil the teacher asked left her upset and the teacher cross.

Swimming has been great, she loves the water even though she cant swim alot of one to one time things done at her pace and where she can question everything with out been judged. keep fighting and keeping find more out about how their effected

Mar 01, 2010
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non-believers
by: Anonymous

Hi

I'm in Dundalk, Co Louth and my 5 year old son has just been diagnosed with SPD. There is a great place in Dundalk that gives friendly, professional help and advise to parents of children with SPD. I am so grateful to them i always knew he was different from his brothers but no one would believe me. Everyone said he was just been bold. Even now after diagnoses they still don't believe. A mother knows her child.

Jan 30, 2010
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same
by: Anonymous

sounds exactly like my 4 1/2 year old daughter who does have SPD. Keep pursuing diagnosis and ot and a neurologists suggestions. Remember you are your daughter's advocate!

Jan 28, 2010
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Hello
by: Mary

I'm in the United States and my son had a lot of the the same signs. He's 3 and I can think back to the age 13 months when he started showing signs of Sensory Integration.

I found the following website and it has help a lot. http://www.spdfoundation.net/ Also read The Out-of-Sync Child by Carol Stock Kranowitz.

He's currently going to OT and Speech therapy. PT is on hold for now they think the issues he has is tied back to Sensory.

Don't give up! I've been fighting for the past year to find out what was wrong with my son. Our Early Childhood program keep telling me there was nothing wrong with him and that he was just speech delayed. I called his doctor and demanded a full work up. I had him evaluated with a OT;PT and Speech terapist.

Jan 28, 2010
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Struggling with Diagnosis
by: Anonymous

Hello,

I am from Ireland too. My daughter is 7 now. She had some systoms that your child have. She went to OT for assessment. she said my daughter have Dyspraxia/ Developmental coordination Disorder. Maybe you should find a good OT to give her full assessment to see if she have other problem eg Austim, SPD, Etc.....They can go through them all during the assessment. They will find something. If they find something more, they may refers her to other eg psychologist. I am not sure. But if i were you i search for a good OT before it too late.

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