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scared
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SweetDeanie Offline
Newbie

Posts: 2
Joined: Dec 2012
#1
scared

Hi there, I wanted to take a moment to introduce myself before diving in to the forums, I'm a bit scared of being in a new place and getting to know new people.

I'm 34 years old and do not have a diagnosis of SPD but think that might be my problem. For as long as I remember I've struggled with what I thought was social anxiety or social phobia but when I described it to someone they suggested I might have SPD.

As a child my brother would run ahead but when encouraged to run off and play I would cling to my parents legs and refuse to go anywhere without them.

I've always been really clumsy, had poor memory, lack of focus/motivation, poor handwriting, never finish a project, always over tired and a total inability to cope with too much or too little light, too much noise (used to have an issue with silence too) and too much movement around me. I've also always found hearing difficult despite passing hearing tests, it's more a processing issue as if I'm not expecting someone to talk I have to ask them to repeat themselves and can't make out the words properly if their is any (even slight) background noise.

For a long time I just thought it was social phobia because I couldn't cope with crowded or noisy places, it becomes like an overload and leads to me dissociating, feeling nauseous, dizzy and like my brain physically hurts and I want to cry and hide somewhere. I have spent a long time avoiding these situations and can only cope with them to a small extent if I have someone with me, but even then if the noise, light or movement reaches a certain level I turn tail and run.

I've also always found it hard to socialise, never feeling like I fit in, cuddles (except with my husband and recently my children) have always felt insanely uncomfortable, when my parents hugged me I'd just hang my arms down by my side and wait for it to end (pray for it to end soon) I have been working on this and starting to find it easier more recently.

My eldest daughter has also been diagnosed with dyslexia and borderline dyspraxia but she has remarked on how she finds loud noise and movement difficult too, often ending up in tears because she says she has a headache. When she was aged 1-7 years old she used to make a noise like "uhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh uhhhhhhhhhhhhhhhhhhhhhhhhhh uhhhhhhhhhhhhhhhhhhhhh" when in loud places or when trying to focus and she told us this was to block out all the noise. She often also seemed to often go in to what looked like a trance. She had MAJOR behavioural problems when she was aged 3-13 and attended Child and Adolescent mental health when she was 7 years old. She is now 15.

My youngest daughter is 2 and the doctors have said she has suspected severe oro motor dyspraxia because she couldn't co-ordinate swallowing and breathing when she was born and had to have an NG tube in till she was 16 months old, she also had delayed crawling, walking and now has speech and language delay of 14-16 months and has been referred for speech and language therapy which she starts in February. There has been no progress at all with her speech for the last 3 months and only says about half a dozen words which are hard to make out. She also has hypermobilty and hypotonia and when she was born died at birth and was resucitated, but following that suffered supraventricular tachycardia. It is believed my placenta failed at 30 weeks pregnant and then I was induced at 38 weeks pregnant but she went in to distress.
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LAC1961 Offline
Regular

Posts: 299
Joined: Jul 2012
#2
RE: scared

You certainly have a lot on your plate, and I appreciate your courage in sharing your story. Welcome to the forum. There is much support here. Keep an open mind and at the same time be aware that some people may share things that you don't want to hear or may seem too forward. There is no shame in having SPD. You can't control what your central nervous system is doing. Although you are an adult, you could still benefit from occupational therapy, so I hope you will seek that out for yourself. It is never too late to start taking care of yourself, something that moms often leave till last. If you don't have insurance that would cover OT for yourself, I would recommend reading Growing an In-Sync Child by Kranowitz and Newman. Many of the sensory exercises presented in this book are easy, sensible things you could do that may help you to compensate for your SPD and experience more peace and comfort in your life. I wish you well and hope you continue to participate in the forums.
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SweetDeanie Offline
Newbie

Posts: 2
Joined: Dec 2012
#3
RE: scared

Thank you LAC1961. I live in the UK so if I can get a diagnosis the OC would be free for me and my children. I'm just unsure how to go about getting a diagnosis. I'll look that book up and see if I can get. I think I do a lot to sabotage myself and find getting motivated to help myself difficult as it's easier to stay in my comfort zone. I know that tasks may sound/be simple but removing myself from the comfort zone is going to be difficult. I have had full blown agorophobia previously and now am only able to leave my house if I have someone with me....this is going to be the hardest thing for me to overcome.
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LAC1961 Offline
Regular

Posts: 299
Joined: Jul 2012
#4
RE: scared

In the US, at least for my daughter, we contacted an Occupational Therapist to ask for an evaluation for SPD after we spoke to her doctor and asked her if she could write a prescription for an OT evaluation. I know there's a user on this form whose user name is Jaffa who lives in the UK, so maybe you can email her on one of her posts to ask how it is accomplished in the UK.
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