UK Mum

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UK Mum

by UK Mum
(England)

Living in the UK it's been extremely hard narrowing down why my daughter acts the way she does, but I need to say a massive thank you to the people who contribute to this site, not just the creators but the parents/carers of children with SPD that have shared their stories and helped me immensely.

My 10 year old has always had issues with clothes, even as a baby she would cry a lot more than average and it was never understood why, as a toddler she developed a hatred for socks and shoes, and the issues were never consistent. She would be a perfect little angel at school and with other children and their parents leading to me being labeled by many people as 'neurotic', 'wanting perfection' and told many times by many teachers, mental health nurses, and a psychiatrist that my daughters behaviour is perfectly normal or just a phase. I am certainly not neurotic, nor do I expect perfection from my child, she is human and I love her very much.

The clothes situation has got progressively worse and she has so little clothing that she is used to and even resorts to sleeping in her school trousers to shield herself from the 'scratchy bed covers'. She hates bubble bath and has to be made to shower and brush her teeth. My local childrens health clinic are still unconvinced that there is something amiss and confess they knowing nothing about SPD.

I am awaiting assessment for my increasingly depressed child, and hope that help comes soon as it is also destroying me, watching my little girl missing out on so much because she feels embarrassed to admit she has a problem. We have no Occupational Therapist in the so it will be interesting which box they try and fit her in this time or how I'll be 'fobbed off', maybe it'll be 'learned behaviour' and I'll be accused of being a bad influence.

I implore anyone who knows what were going through, dont give up, dont listen to soem professionals who dont wish to see anything they are not familiar with, we need to help our kids, its not their fault.

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UK Mum

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spd food issues
by: mum hampshire uk

Hi I am so glad to find your site and also to hear from other uk mums. I have a 7 year old boy who has big issues with meals , he has always been a .fussy eater. And for years my worries have been answered by the comment he will grow out of it. he eats about three different meals and anything new is a horrendous ordeal for him and me watching him I hope to go to my gp for help after finding your site. Thankyou again.I hope the uk could start a group or exchange emails for contact?

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support group.that would be fantastic
by: Anonymous

i have often thought about setting up a support group in the uk but am unsure how to go about it i bet there are a lot of parents who have thought the exact same thing maybe we need to get our heads together and see if we can come up with some good ideas.it is good to know that you have gone to see your mp.

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Not all doom and gloom
by: Jomacorn

I heard about SPD in my role as a SENCo in a secondary school and could not believe how many boxes I could tick for my eldest daughter. She is very bright and doing well at school but says it hurts to brush her teeth, her hair, hates having glue or paint etc on her hands, sobs uncontrollably at firework displays. Anyway, I did nothing at first as I thought people would think I was being ridiculous as she is so good at school. However, emotionally she is not doing so well so on Thursday I took her to the doctor and asked for a referral for assessment with the OT. He did not question my judgement and did a letter of referral there and then - brilliant!!

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spread the news about spd
by: Anonymous

sometimes i feel so alone my youngest son has spd my middle son has something called visual stress and dyslexia (borderline) and now my 12 year old daughter is on the waiting list to be looked at by an ot she also is borderline dyslexic has some coordination difficulties and also has a vision problem. she complains about clothing not feeling right has great difficulty wearing shoes has extreme sensitivity to pain,suffers from dizziness,and constantly thinks she is no good at anything even though she is. i have tried to explain these things to certain family members they seem to think that i overreact and have been told not to mollycoddle her even though i dont.i find this offensive and strongly believe that spd needs to be made more aware of as no one seems to have heard of it and trying to make people understand this complicated neurological disorder makes me feel like i am fighting a losing battle.

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us too!
by: Anonymous

Im so pleased to read your post. We have a 6yr old girl who has problems with all 5 senses and vestibular regulation issues . She was diagnosed 3 years ago I try to explain to people how difficult it can be, but they just dont get it. She is over- receptive and cant regulate herself. She is petrified of toilets, bed sheets, bubblebaths, hairbrushes, car seats, clocks, florescent lighting, you name it - the list is endless. She is either screaming or disengaged most of the time. school is ok, but is the cause of a lot of problems. I would be very interested in setting up/ joining a support group.

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I know how you feel
by: Anonymous

Hi UK mum.. I am a Uk mum too who's 6 year old daughter has SPD and everything you have said is my daughter too.. It can take me on a really bad day up to 8 hours to get her dressed...Every item of clothing she has to put on takes for ever.. I think us parents have to fight this battle in the UK and get the children and us parents the support we need.. We cant be left to just cope.. I have struggled for the past 6 years with very little support.. No one has heard of SPD..

I aim to change that and am talking to my local MP and trying to set up a support group.. They have tested my daughter for ADHD/ Autism and she is none of them just a sensory processing child.
Teachers and Doctors need to be told and taught about SPD children as many are put on drugs and dont need to be... These american sites are all us UK mums have and the UK need to learn a lesson from fantastic sites like this....

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spd
by: Anonymous

dont loose heart keep pushing the professionals i also know how you feel. my son is now 6years and i was told he has spd after years of knowing there was something not right. he had no fear at all what so ever about anything we were constantly on the edges of our seats. he only ate a couple of foods.he is underrespnsive at school and overresponsive at home he has difficulty with conversation as he cant always express properly.

i am fortunate that the school have a fantastic senco and great staff because after years of trying to get people to listen to me the school also recognised there were problems.i still feel alone at times because people do not understand.you are the mother and you know best its your instinct.spd however is apparently not a diagnosis it is an umbrella term for lots of other individual terms. i to would recommend the book The Out-of-Sync Child .i hope this has helped a little.its not easy but you will get there.

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SOUNDS LIKE SPD DEFINETLY
by: Anonymous

SOUNDS JUST LIKE MY NOW 9 YEAR OLD GRANDDAUGHTER, THE CLOTHING ISSUES, THE BATHING ISSUES, AND, WITH HER EVEN THE EATING ISSUES. IT REALLY IS FRUSTRATING, BUT DEFINITELY NOT THEIR FAULT. GET THE BOOK "THE OUT OF SYNC CHILD" IF YOU DON'T ALREADY HAVE IT. IT IS ALL ABOUT SPD, AND MAYBE EVEN TAKE IT WITH YOU TO HER APPOINTMENTS.MEDICAL PEOPLE NEED TO BE EDUCATED TOO. TELL HER SHE IS NOT ALONE. GOOD LUCK!!

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You are so right...
by: Anonymous

About NOT listening to professionals who are not educated in SPD.
The school will be the first to poopoo this idea, as that means more work for them. They like to look and dig for things so that they can lay the blame at home or with the parents, that way, it would be more in the parents laps to deal with these issues.

ALWAYS listen to your motherly instincts, we KNOW when something isnt right with our children.
OT eval, most important, and annual visits to a developmental pediatrician are a must.
They will back you in most cases with anything, especially in the school.
Good luck, i wish you and your family the best!!! Kim

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