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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Aug 15, 2016
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It does get better....
by: Anonymous

I have two older children with SPD, my son is 25 and my daughter is 16. My son had awful speech problems and if anything, his behaviour to me seemed very much on the autistic spectrum but I couldn't get a diagnosis for years. He was ok with food and clothes but struggled socially and had problems with new places, noise and balance.

My daughter came along 9 years later and although she had similar issues, some were completely different. She didn't crawl and walked late, was an awful eater and only in the last couple of years will eat a proper meal with us. My son was fine at school but my daughter struggled hugely. She also hates new places, can't ride a bike and struggles with noise. She still sleeps very badly.

Several years ago, I managed to persuade my GP to refer my son to CAMHS as he was about to turn 18 and I knew I'd never get any kind of diagnosis once he was an adult. We live in West Sussex and at the time, were so lucky to see a knowledgeable occupational therapist who diagnosed my son with SPD (or SID as it was known as then).

At this time, I mentioned my daughter who was seen separately and also diagnosed with SPD. My daughter was offered occupational therapy which was very helpful but only limited to 6 weeks so we have been on our own since. My son wasn't offered any help.

All I can say is that from my experience, it does get better. My son is now married (to a similar quirky character!) and he has a journalism job which he loves in Manchester. He is still not what people would class as your average 25 year old but he is the kindest most loving person you could ever wish to meet.

My daughter is waiting for her GCSE results - it was also a struggle to have her assessed for extra exam time but we did and she had 25% additional time as well as a break between each question when needed. She is due to go to college in September and will be buddied up with somebody so that she doesn't get lost (another issue as neither of them have any sense of direction - thanks goodness for phone apps!).

My thoughts are with you all as I really do know how difficult it is as SPD is a condition that isn't so obvious to the outside world.

Mar 24, 2016
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My boy
by: Anonymous

Hello!

Im mum of 3 year old boy who knows no fear about anything. He is nearly 4 now and didnt try new food for almost 2 years. He will not tuch fruit or vegg,cant stand even smell. Bearly tolerate look of apples in the bowl. He likes pain. Even as a baby he enjoyed when adults was biting his fingers. He pushed his little fingers into our mouth and enjoyed the pain! He often ask for physical punishments and enjoy it! It scares me! We have trouble with school, because he often hurts other children. He is in constant movement. He need to chew on something all the time. If he doesnt have something to chew on, he will bite his nails or eat snot.

I cant and dont know how to explain his teachers, that he is not a bad boy, or that we have not family problems!

Mar 03, 2016
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spd therapy services
by: janegibson77@hotmail.com

Hi just found out today from the ot I referred my son too I now need to refer him to pediatric ot. after being tolf he was on waiting. List for spd therapy with them. 2 week later now finally got him on waiting list for right place . Only pediatric ot does spd therapy apparently for kids heres hoping . If I get anything more ill post it 5 month on to get my son help and still in same place

Mar 03, 2016
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For Lady with son who has Tourette and spd
by: Jane77

I'd put up message yesterday and tried to amend it but unfortunately it wouldn't let me. It's regarding u contacting an occupational therapist through social work for spd therapy specialising in smell sound touch therapy. I meant to say our psychologist told me she can't help with spd and that she said she isn't qualified even to diagnose spd. no social worker is involved u ask to be put through to an occupational therapist and u can self refer.

I spoke to an ot nd explained all symptoms and that hes been diagnosed with processing difficulties, she told me its spd symptoms and they do the therapy there. I'm in coatbridge our local ones number is 01236 622100. Hes been seeing chams for 5 month and all theyve done is assess him for everythjing butn spd now i feel as if were getting him to the right people. I hope this helps Im Sorry for the misprint
If u need any mor info email me at janegibson77@hotmail.com or my mobile is 07475625340
Good luck

Mar 02, 2016
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for the lady with son with spd and tourettes
by: Anonymous

Hi my son has spd but still awaiting therapy. U can call social work and self referv ask to speak to an ot. Explain its spd therapy ur looking gor. Call ur local social work its only an ot specialist that can do listen therapy smell touch sound etc therapy. Its done through play as well hell get put on a sensory diet yhis will help wilth behaviour thought process the therapy helps the brain generalise the smells sounds clothing is ok to him hell learn to tolerate everyday previously overwhelming things as acceptable causing him to function without distress. I referred my son but u have to wait for an ot not sure how llon gone itll take I did speak to an ot who said thats the people who specialises in spd therapy.

Psychologist are qualified to help sensory processing disorder my son been seeing one for 5 moth whos done nothing u can email me on janegibson77@hotmail.com if u need any more info or call on 07475625340 good luck

Feb 18, 2016
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My Son....
by: Anonymous

My 10yr old son has Tourettes syndrome but it is not the Tourettes that causes a problem its all the sensory issues (which apparently we are dealing so well with we should just carry on the way we are). I have just bumped into SPD and it sound familier! My son has never liked labels, itchy clothes, socks or pants. He does not like his nails being cut and only manages a hair cut out of vanity these days, We bin the t shirt worn. We have problems with smell even smells that are nice. Toothpaste and brushing are very challenging because of the taste and feel. My sons hearing is super sonic, people breathing, the way a shoe makes a noise, a teacher speaking but not all teachers. The lists go on.

All of the above things and more cause my son to get upset, angry, frightened or even ill. He holds himself together so well at school as well with the tourettes. All people ever say is oh he is so good you would never know or oh yeah I have that or my child does that, I dont think any one really understands. It takes us soo long to get ready to do any thing and it seems to be getting worse. Can any one suggest who I need to speak to about this? Where can I get help for this? Thanks for reading

Feb 18, 2016
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occupational therapy
by: janegibson77@hotmail.com

Hi just wanted to let u guys know I have went over child psychologist s head and contacted social work and referred my son for occupational therapy for listening skills and tolerance of smells clothing therapy. The ot I spoke to said he needs therapy and its something they do for spd.

So guys im now waiting on the list but dont know how long well wait. Chams has done nothing for my son. U can self refrer by fon ur local social services by asking for an ot no social worker is involved.

Feb 13, 2016
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struggling to get help with ot and listening therapy
by: janegibson77@hotmail.com

Hi my son has been diagnosed with sensory processing disorder. He has been seeing chams child psycologist for 3 months. Shes offered no ot therapy or sensory listening therapy.she just wants to assess him for adhd and aspergerys syndrome. I feel shes hopeless we have a friend who's a psychiatrist assessed him for about 2 hours she listened asked questions and my son was so relieved she understands what actually happening to him. His mouth did not stop he was so open with her. She could say is this whats happening hed be yes and explain the full scenario of what happens when teachers giving instructions. She was bang on the money.

She said he doesnt have adhd or Asperger said hes getting frustrated because hes 7 steps ahead when being taught in school she said hes processing 7 answers and ways to do something before teacher s even finished instructions. She said hes processing at such a rate but its not making it sway onto paper. She said he needs therapy not adhd and autism assessment s and behaviours are related to sensory overload frustration and anxiety.

I am struggling to get school or his psycologist to do anything to help the psd. Iam scanning the internet for places specialising in this near glasgow as his psycologist is way off base. She is hopeless talking to school and barely explained spd to them and us.does anyone know of anywhere other than chams f or kids.

Hes had problems ay school behaviour and struggling with school work. In home hes anger anxious and wanted to kill himself, dressing shoes smells is a major issue. He isc is just not getting the help he needs misunderstood.

If anyone knows anywhere he can get help please email me on janegibson77@hotmail.com. al so haley in manchester theres a place a neurological centre give them a call on 01403240002 ive rad good thing about them.

Dec 16, 2015
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Trying to get an assessment
by: SewingBee

Hello! Great to read your comments. It is very comforting to feel as a parent that you are not the only one in a strange world! My son's life changed when he started junior. He has always struggled with labels and stratchy clothes. I get excited when we find suitable nighttime jamas!He has also struggled to feel comfortable in large groups & relaxes at the end of parties. Picky eater. Still chews everything.

He has developed a massive difficulty with sound & has become super sensitive to his emotions. it was seen as bad behaviour last year but luckily school have now recognised that he needs extra help. He now has ear defenders for all lessons. It also means he can attend various events he couldn't have gone to before and i have also volunteered to help him as a volunteer for trips! It is exhaugsting to fit in around work but has been worth it for his confidence & that he is not naughty.

The real tricky bit is getting spd recognised and getting formal help or any diagnosis. It has all been what i think! I have spent a year and a half fighting with the doctor trying to get an appointment with a paedeatrician to get an assessment. I keep being told no funding is available so cannot start a case to look at his needs. it is all very frustrating.

Jul 12, 2015
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worked about my eldest son
by: Debbie

My youngest son has spd, I know he has but I am still waiting for a diagnosis. He is six. Life is hard, but his eight year old brother is now worrying me. He can argue for hours over a very small thing, shouting at me that he knows better and when I have calmly explained a hundred times that he is wrong, he then argues the other way. It's like a broken record repeating the same mantra over and over. I have dismissed this as growing up, but it goes on for hours and hours. He is very hard to bring down. Now I've noticed that he is organising his bedroom with precision. Everything has a place. I would move one small item without his knowledge and he spots it straight away. I don't know if I should be worried, but his play can be inappropriate at times and should I get him checked out?

Apr 21, 2015
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Not Alone
by: Anonymous

I am so glad I found this site. It's made me realise we're not on our own with this.

My son, who is 6 and in Year 1, hates loud noises, the first thing I have to do when we visit a public loo is check if there's a hand dryer. He hates them.

He is having a lot of trouble learning to write. His reading is fine.

He is always running around at full pelt, fidgeting, is unable to sit still and focus on anything for long without getting up and spinning or running, climbing and jumping.

He puts his hands over his ears in the school playground and grimaces as though in agony. He complains of headaches from classroom noise.

He gets very excited about things he likes and flaps his hands and pus them in his mouth. He walks on his toes a lot. He doesn't seem to have any food or clothing issues.

That said, he has a lot of friends at school and doesn't appear to have any major problems with social interaction other than seeming shy at times with new people, which isn't out of the ordinary. He's very sensitive though and his feelings are easily hurt.

The school called us in last week and said he has problems with concentration and with planning tasks. We ate trialling certain measures and techniques to establish what works for him.

I have got a referral to a paediatrician consultant, both the school and the GP have been fantastic.

We are in the position where I have private health insurance through my work and they have agreed to fund the paediatrician consultation. We live in Cornwall but are prepared to travel. Does anyone have any recommendations for a paediatrician please?

The past few weeks have been absolutely horrible, we realised our boy has basically struggled all his life and the guilt is just horrendous. Did anyone else feel that way? He just seemed a bright, very energetic and excitable little boy.

Apr 19, 2015
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My 5 year old daughter has sensory issues
by: Hayley

Hi
My 5 year old daughter was born 11 weeks premature and has major sensory issues, she has habitually rocked (day and night) since she was 2, which affects her sleep a lot now she is at school.

She has been discharged from speech and language therapy and also occupational therapy, whom were no help at all. We are now waiting for an appointment with the autism experts.

I have researched so much into this and I do believe that she has spd.

My daughter hates school so much, she tells me that it's too noisy and it breaks my heart to send her everyday!

During the school holidays, we have such a different child but as soon as we mention the word school, she has a total meltdown.
I am on Facebook - Hayley Rolfe from Manchester or email me hayley.rolfe1985@gmail.com if anybody has any advise on getting a diagnosis.
Thanks a lot x

Apr 18, 2015
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SPD Uk
by: Jacqui

My daughter has SPD and I think my son has too, I am awaiting a diagnosis for her, she is only 3.5 and very different at home than in school. Autism was mentioned but after several assessments with paediatricians she does not meet the criteria, I never felt right about that, I felt they were trying to force a diagnosis to fit. We changed her pre school as they were so determined to have her labelled. She seems to be a sort of seeker wanting to climb on my back and neck, sleeping poorly from a baby to a toddler only rectified when we got her a big quilt, running and being overly tactile. My older son is brilliant in school but hates having his nails cut, labels in his clothes, is a fussy eater and puts his hands over his ears when loud noises are made. I think there needs to be more awareness and support! Good luck mummies and daddies here xx

Mar 18, 2015
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Spd
by: Emma loo. C

Hi all,

My son is 5 and has always been a drama queen a non eater only of bland foods. He started reception and and had to have constant 1 to 1. He started year 1 and quite quickly became disruptive. After the school asked if I could bring him to reception in the morning he became violent towards teachers and now other children. They asked me to start picking him up earlier and now he punches kicks bites and throws furniture. he dosnt behave like this at home at worst he stamps and throws himself around if he can't get his own way.

His support teacher has a child with dispraxia hence the reason she does what she does now. Too many spd kids are mis diagnosed with adhd but thanks to his teacher we all agree that he can't be for many reasons and that spd is more likely. After stumbling across an American site 'spd foundation' I found that the treatment is occupational therapy but don't seem to be able to find any info here in the uk. Does anyone know where I can get some advice until we can get a diagnosis as he has already been excluded once and probably will again as they have no choice they are all at risk.

Mar 11, 2015
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Thank you
by: Chuckles

I could cry reading this. I've found answers tonight and ready to move forward. I'm not the only mother who has a child with what I've honestly thought as very weird "issues"

Nov 27, 2014
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Sensitive, anxious and SPD.
by: Lucy

Wow, other mums in the same position as me, how reassuring, as at the moment here in Mulbarton, near Norwich, I am at a total loss as to where to begin to make my sons life more pleasant with SPD. If anyone (Rebecca?) lives close and fancies getting in touch via FB, my name is Lucy Eade, my photo is me with my two blonde boys. My youngest son is 3 and is the happiest little chap ever, he has no sensory issues.... my older son is 6 and is incredibly sensitive, sensory issues and seems like a depressed teenager a lot of the time. He hates school, refuses to talk about it and doesn't seem to have any close friends, which I know is really hard for him. the school have labelled him as defiant and says he just lolls about in class, wont sit still at carpet time, they are clearly quite fed up with him which breaks my heart.

Oct 07, 2014
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Sensory Integration Network (UK & Ireland)
by: Anonymous

If you are based in the UK and Ireland, you can find information, support and training courses from the Sensory Integration Network. It is a not for profit not-for-profit organisation, promoting education, good practice and research into the theory and practice of Ayres' Sensory Integration. www.sensoryintegration.org.uk

Sep 20, 2014
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Sensory processing disorder parent
by: Anonymous

Hi, my little girl was diagnosed as a moderate autistic just before she turned 4. She is now 9 and a half and has just been diagnosed with sensory processing disorder too. I always knew there was more to it than just a.s.d so it came as no surprise, infact it was a relief as I thought it would help her be understood more in school (she's in mainstream but awaiting a decision from the L.A as to a move into special needs) but no such luck with the schools help!

She flaps, clears her throat, paces around, eats unedible things such as fingernails, bogies (sorry! Lol) etc and is sensitive to every possible sensory aspect, noise (too loud or too quiet) smells, touch, clothing, textures, itchiness, wool etc, sight such as brightness, dark, packets, litter, dog dirt, tastes and textures of food, even the sight of some foods make her gag. She can't take medicines due to the taste and texture and will vomit instantly if I have to give her anything and with a child with a low immune system who often needs antibiotics it is really difficult as the only ones she can tolerate is infant calpol and anoxycillin, anything else she throws up instantly.

She suffers from bad migraines and has just been prescribed a medication which I have to try her with and I'm worried how that's going to pan out. She also has frequent tummy upsets and cramps, eye pain and eye rolling and is sensitive to cheese. I've done a sensory processing workshop and know how to try and manage the condition and compromise etc but I'd love to speak to other parents in a similar situation as I'd like to share tips etc.

I have 2 other children both on the autistic spectrum but neither have sensory processing dosorder, only mild sensory sensitivities. I can totally sympathise with her as I've tried to put myself in her shoes and feel how she must and it's horrible so it must be a million times worse for her. She can't concentrate or remain focused and I completely understand why but I find it annoying it's not a recognised condition in the uk and not it the medical handbook when there's no doubt thousands of children out there with this condition and parents not knowing why their child is behaving the way he/she does. More needs to be done to raise awareness

Sep 17, 2014
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Message for Vicky
by: Ali Graves

Hi! This is a response to Vicky- I also live in Surrey and would love to hear from you again. My older son who was born in 2010 has SPD and is currently receiving OT, Ali (I'm on FB and my photo is with my younger red headed son!)

Jun 17, 2014
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SPD experience
by: Anonymous

Hi,

Having just read some of these posts, I'd thought I would share some of the issues we have had with my son who is now 7.

As a toddler he would continuously lash out at other children especially at children's play areas etc. This continued into early school life where he would "supposedly" deliberately antagonise other children and become aggressive with his other peers. He also started to hate school and was deemed as the naughty child by both the school and various parents alike.
The school suggested he see a children's physiatrist who diagnosed that my son was a controlling child (aged 6!) that needed discipline and so a course of super nanny treatment was required!

Long story short my wife continued to press to get another diagnosis from an OT who fortunately diagnosed my son with SPD. The OT has been fantastic albeit once pushed hard due to the large OT's workload. The school senco in liaison with the OT has now developed a programme that has seen some fantastic improvements.

We as a family are now happy that we have a diagnosis that we can work too in the hope that when my child reaches adulthood, his SPD will be a thing of the past?

Our advice, go with your gut instinct in matching the correct diagnosis for child. Good luck to you all

Jun 15, 2014
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UK mum too
by: Jenny

Hi I'm waiting to get the ball rolling to get diagnosed. I feel like I'm banging my head against a wall. The school itself have been fantastic. The teacher agrees with me that he has a medical sensory issue. He is 6 and as well as being sensitive we are waiting to see about dyspraxia. I have no doubt in my mind that he has both. The seams of socks, cutting nails hates being tickled. Can be touched on his terms. Touches floor constantly. Has to put everything to his mouth talks loudly, couldn't care less about being messy. Had to bang loudly can't sit still, messy eater he will smear food over himself loves messy play. I really could go on. I've now got a CAF team on board we have a meeting next month the lady I saw went through the sheet gave me option A then promptly gave me a option B if option A doesn't get us to cdc.

Feb 20, 2014
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SPD
by: Rebecca

My son was diagnosed in the Autistic spectrum when he was 6, he is now 8 (I still believe it is more SPD) and there is not a lot of help in Norwich for either!

I WOULD BE VERY INTERESTED IN A UK HELP GROUP I think we all need to share our experiences, help/treatment etc what to ask etc etc

Dec 01, 2013
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Support Group
by: Nanny

It is both encouraging and heartbreaking to read all the comments here. We have always known my grandson was different but only now age 7 have we had a diagnosis. But the SENCO has been very lax in liaising with the OT, taking no note of correspondence sent to her regarding my grandson. Has anyone had any experience of asking for a statement for their child to get them the help they need in the classroom. A friend who is a headteacher suggested we fight for a statement.
I would love to find a support group, especially for dads to get support from each other. It is hard for them to understand how to treat their very different child.

Sep 02, 2013
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finally getting somewhere
by: Anonymous

I wrote on here some time ago about my then 5 year old daughter. We went private in the end although could not actually get a diagnosis of SPD they advised she did have sensory issues. Since then we asked to get a referral for ADHD as I was convinced she was suffering with ADHD. Several months on they are not entirely sure she has ADHD but it seems her sensory problems, ie. overheating, uncomfortable clothing with labels, or rough seems, socks, anything damp etc is a trigger for her extreme mood swings and ADHD behaviour. Her school have been brilliant and she now has one to one classroom helper in the morning to get her comfortable and settled in. We are, I think on the road to finally sorting things out. So my advice would be don't take no for an answer and insist on being heard.

Sep 02, 2013
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4 yr old Daughter undiagnosed as yet
by: Jayne

Hello. My daughter us just approaching 4 yrs old. We have known from when Our daughter was a very young baby that she is different.
Now at preschool they are trying to label her as autistic and my mere mention of sensitivity and spd makes her teacher look at my as if I have 3 heads!

I have not had her diagnosed as having spd, but believe me the research I have had to do and my findings go hand in hand with her being sensitive and with spd.

We have a 15 month old daughter also who does not have spd, and the behavior differences are huge.
It's very hard at times though I am learning constantly a lot about myself and about the world through my daughters eyes.

It breaks my heart that she is missing out on so much, she is so sensitive to noises, emotions of adults and children, lights, surprises, a sudden change when doing things, trying new things, interacting with others.... The upset it causes her can be huge and trying to teach her how to gain control of herself is very slowly coming along, but every day there us something that she can not tolerate. It's effecting her life and her progress.

I am battling on for diagnoses and support. It is a struggle but I entirely believe that spd is a factor of my daughters make up.
I will look for the support page on FB.
If there us anyone in Oxfordshire and meet ups I would be very interested in getting together.
JW

Apr 26, 2013
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Sensory Processing Support Group
by: Vicky

Hi there,

My little boy is three and has always had sensory issues - he gets very anxious in new places, doesn't like certain noises and has alot of fears. From 6 months he had severe stranger anxiety and now find is very difficult to be in the company of other children as he gets very distressed when other children cry.

I would like to form a support group in Surrey but would only be able to meet 1 or 2 people at a time because of his issues.

Please let me know if you are interested.

Vicky


Mar 03, 2013
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UK SUPPORT GROUP
by: EVA

Hello again everyone, just a thought about making communication easier... There is a Spd uk parent support group on facebook. If any of you want to share experiences, get advise, send private msg's etc. You can do so via this facebook page. Perhaps se could organise more via this too.... I.e. Meeting up with our kids?etc. Its amazing that there are so many of us in the same boat in this country but still awareness and support is so poor. I just searched 'sensory processing disorder parent support UK' into the facebook search bar and asked to join. Good luck, hope to c u there!!xx

Mar 03, 2013
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Home-school!
by: Anonymous

May I suggest home educating your children so they can become more balanced with better routines and by not being rushed or forced to be apart from Mum?

Look and ask about on some home education forums about the sensory issues as alot of home educating Mums have become very resourceful because they've had to fight for their childrens needs.

Home education can be done while you work; you can pay for childcare at your house or work opposite shifts to your partner so you are both sharing the childcare, or create a business from home.

I also feel that my Dad has severe sensory issues, I have had moderate but got a bit better as I've entered adulthood I think or have I adjusted my lifestyle to suit me? Mmm. I feel that all three of my children have sensory issues too, my children have got so much better since they started home education; school didn't help at all, they were so worked up when they got home it was very difficult for me to manage!
One was more aggressive and the other was more depressive.
I ABSOLUTELY LOVE OUR LIFE NOW!

Feb 24, 2013
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UK SPD Parent support group
by: EVA

Hi all, After reading all your comments I feel sick with sadness that there are so many families in this country that are in the same situation as my family... Without support or understanding. I have been desparately be searching for a uk based support group. My daughter is 11yrs old and suffers daily with her SPD. She has a diagnosis that we had done at a private clinic but we still recieve very little help. My daughter becomes increasingly frustrated, depressed and suffering. It would be so helpful to meet other families who understand, for my daughter to meet other children like her, so she believes she's not on her own, sh's not a weirdo, a freak like other children make her feel. If anyone else is interested in forming a group together please please add your comments... Perhaps we can change things for our children in the uk.xx xx

Feb 15, 2013
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Special Children, Parents of the UK stand together.
by: Sharon

SPD is Sensory Processing Disorder in the UK.. ie SPD... It has taken my Daughter from when she was born till she was 6 of pushing my GP to be refered to a childrens centre near me to be told she had SPD. Which I knew before they did she is Touch Sensitive.. Tactile Defensive. She was tested for all forms of Autism and was cleared..

She is a now 8 years old and is in the top 4 girls in her class of a mainstream school.. She does have some OCD ways about her.. But is not classed as in the Autism spectrum.. Just a SPD little girl who is very slowly learning to deal with it through my research as most GPs and general public have no idea what SPD is.. Its up to us to educate the public.. Its very frustrating not only for us as parents to deal with but for our children who live with this.. As people can see what is wrong with them they presume nothing is wrong with them.. So parents of the UK we need to stand together and change peoples views for these special children xx

Feb 15, 2013
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Sensory Processing Problems
by: Amanda

Hi
I posted below last summer about my son, he is 3 and was recently diagnosed with SPD. It is called something different in the UK. If you go to your GP and say you think your child has some sensory integration or processing problems you might get a better response as they seem to recognise this as SPD.

Ask to be referred to the occupational therapist and the community paediatrician. My son has seen various professionals and they all agree that he has SPD. When he goes to school he will be classed as having Autistic Spectrum Disorder as it is all lumped together under this heading. Hope this helps people trying to get a diagnosis.

Feb 15, 2013
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This Site
by: Michelle R

Omg im in tears of relief literally reading this, my 7 year old daughter has to have the seams of her socks just right, shoes have to be tight, she lashes out, she quiet in school only has small peer group she avoids contact with adults clings to me i can go on,ive had an ongoing battle with her school they did a report to social services, as i cant get her to school on time because of her traits she goes into melt down ive had social services for over a year and half now and the school at each meeting keep saying she sad withdrawn doesnt mix well quiet and her being late for school is putting her behind ive even been proscuted because of her lateness recieved a £400 fine,

i have mental health condition (depression) so basically they use my mental health issues saying im making up all the things she does, even thou its been witnessed by social services f.i.t, its been hell i typed in her behaviours it came up with pda and this, i feel this fits more her, the tears are of relief that im not going mad i know there something wrong with my little girl have done for long time as there been delays in development etc, its not that im looking to label her, i so dont want that, i just want them to understand what its like i will be printing off details and marching in the headmistresses office on Monday when they return to school, and saying read this, as this tells you exactly what i have been dealing with and how ive been battling with you against me since she turned 5, the school have really made my life hell, thank you a million times for this site

Sep 29, 2012
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UK SUPPORT?
by: Marissa

How can we send private messages, I really dont understand this site on how to contact others in the UK.

This site is amazing for information and about reading storys of others, but as it is an American site, Ireally need help in the UK.

Please can any one help?

Marissa

Sep 29, 2012
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for Michelle
by: Marissa

Michelle, I cried so much when I read your story, I think it was for the relief that I wasn't going mad! You wrote......

She will NOT go upstairs on her own at all, in anyone's house - she always feels that there is someone in the spare room and said that if she makes any noise (ie flush the toilet or make a loud noise) then they will know she is there.

My 6yr old does this, its the first time I have ever read that some one else does this.
What scares me is that my son can be sitting down, I then walk toward him, he shakes, stretches his arms out and moves back wards screaming "no, no, no ahhhhhhhhhh!" it really upsets me as I have never hurt him, its as if he is having a night mare but awake, this is how he is about going up the stairs, but he is perfectly fine if you go with him, he does not show any fear.

He grunts and scowls, head down, fists clenched, and long grunts in anger and stiffens up if he is upset, I try to ignore him but he gets worse, to the extent of kicking or hitting some thing, if I tickle him, he snaps out of it and is laughing happily, he then acts as if its never happened.
I have often wondered if he is schizophrenic, Ive been too scared to mention it.

Sep 29, 2012
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Anonymous reply
by: Anonymous

I read your post and really hope you are able to change schools in your area? It seems from your post you are being pushed towards strategies for your child you are not comfortable with. I am a teacher and also a parent of a boy who has parts of spd and understand your desperation. I have seen and worked in several schools in UK and they differ greatly in their approach to special needs, so I recommend trying to investigate other schools.. Where you are not 'bullied' into situations you are not happy with.

Sep 26, 2012
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For Mum
by: Anonymous

Hi, I live in the UK and have been trying for 6 yrs to get help for my son. I am still in constant battles with the school nurse and the teachers, they continue to blame me and say I have raised my son with negativity.

He has just been diagnosed with Sensory Processing Disorder and Aspergers, the school nurse refuses to believe it and insists he has ADD and it is my fault.

I am finding it difficult to get the help my son so desperately needs, she keeps influencing those involved with my son, doctors start listening to her,she has worked with children for 13 yrs and says my son needs help with his lack of confidence, grrrr its Aspergers!

I was forced to go on a course for good parenting, although my grown up children have gone to university and left with first degree honours.

She also states he must learn to behave, the teachers punish him for his scowling and silence, they make him work at play times and miss the fun. They are driving me mad as they will not listen, their ignorance is making him worse! I would love to be able to contact others in the UK

Aug 23, 2012
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My 2 yr 8 mth boy diagnosed with sensory processing problems
by: Amanda

Hi,
Just had my son diagnosed with SPD. I am a teacher myself and often have to pick up on learning difficulties in school. I observed my son at nursery and saw how different he was from the other 2 year olds. He just shuts down. His speech is delayed, he has this thing about eating paper, cardboard, tissue, his nappy, he gnaws walls and screams if you dry his hair or put a toothbrush in his mouth.

He has always been a fussy eater, he's only just started excepting stage 3 meals. He has never slept through at night, can't regulate his temperature and has started attacking me and my husband. The only thing I find that works is swimming. He loves it. We have been lucky as he has been referred to occupational therapy, speech and language and the community paeditrian. I think the problem in the uk is that they look for these issues at 2 and 3 and if you don't get referred then it is up to the primary school and as you say most people don't know what it is.

Aug 21, 2012
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Advice Please!!
by: Michelle

Hi, I wonder if someone could give me some advice please. It is about my 10 year old daughter. She has always been a very emotional and sensitive child but lately she is getting worse. She will NOT go upstairs on her own at all, in anyone's house - she always feels that there is someone in the spare room and said that if she makes any noise (ie flush the toilet or make a loud noise) then they will know she is there. Just reading this site I have noticed other things that I didn't think about before. She has always hated loud noises of any sort, even shouting, the hoover, or even if the telly is too loud. She is obsessed with things being in order and is always putting her books into alphabetical order or things in order by colour or numbers and her other obsession is with socks (not having the seam right) and has to have labels cut out of her tops. I may be putting 2 and 2 together and getting 10 but does anyone think there could be more to this than me just being neurotic :) I would really appreciate any advice, even if it is just to say stop worrying its just normal!!

Thanks so much x

Jun 22, 2012
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Seeking an Answer
by: Anonymous

I am convinced my 4 year old daughtert has this. She is absolutely obsessed with getting her socks on right and if the seams are not in line she has a meltdown and can't put her shoes on saying "something is wrong". She constantly thinks she is wet down below and wipes herself every couple of minutes, which proves impossible to get out of the house to do anything. Her moods change from being loving and cuddly to then throwing a complete fit over the slightest thing. She fights me and scratches and then in a second is cuddling up saying sorry. She has never really slept properly since she was born and is constantly fidgeting and moving around be it when she goes to bed or sitting down. When she is on a complete high, we just can't stop her from talking...constantly. I had asked for her to be referred by our GP, who did do this, as she had never heard of SPD. However, several months on, we have heard absolutely nothing. Thinking if just going private to get an assessment.

Aug 24, 2011
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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?

Jul 07, 2011
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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.

Jun 25, 2011
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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!!

Jun 23, 2011
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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.

Jun 23, 2011
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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.

May 17, 2011
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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....

Mar 17, 2011
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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.

Apr 09, 2010
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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!!

Mar 20, 2010
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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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