Hello,

My name is Lewis, I am 22 years old and I'm living in South Yorkshire but originally from South Africa. I cannot believe I have found this forum!!!

1. What brings you here?

Hopefully to meet other people like me, as I feel very alone with this. No doctors or therapist in the UK I have been to have ever even heard of SPD.

2. What is your relations to someone with SPD? Do you have it? a child of yours? Do you treat SPD kids as a professional?

I suffer from SPD.

3. Share a little of your journey if you'd like.

I was diagnosed with quite an extreme case of SPD when I was about 3 years old when I was still living in South Africa. The specialist was convinced I would grow out of it when I got older. Although I have got better asI've grown older, I still feel it cripples me.

4. Is there any immediate help you need?

I would love to meet another person with SPD. I would also love to find a therapist in South Yorkshire that deals with SPD in adults.

5. SPD doesn't run your life! What are you or your child's gifts? Interests?

I am extremely obsessive with planning. I have to plan everything, down to my routine for getting ready for work in the morning, all the way to how I am going to get a promotion at work or even weekend activities. I cannot stand anything being left unplanned or unorganised. I think this is a curse as well as a blessing but its helped me to achieve many things in my career especially at my young age of 22.


6. What do you like to do in your spare time? Any hobbies or interests?

I love cars, I love working on them because I know I'll do it properly. If I leave a car with a mechanic I obsess about them doing a bad job and potentially making my car unsafe.


If there is anyone out there that has gone through this from a young age and is still dealing with this as an adult and has been lucky enough to have a diagnosis, please get in touch I'd really love to hear from you.

Or if you have kids and have questions about SPD I'll be happy to help where I can (I'm no specialist but I really can empathise with other people with this "condition".) I was an EXTREMELY difficult child.

I can still remember how extreme the sensations were as a child and the only way I knew how to express my feelings was to get extremely angry/aggressive or get extremely upset.

I had no idea why I felt the way I did about certain textures/sound/visuals/being touched/food and many other things that I didn't/still don't understand to this very day. I use to get frustrated why other people couldn't understand what I was feeling and it was all very confusing especially as a child.

So as stated, I'd love to hear from anyone dealing with SPD.

Best wishes,

Lewis

Hi Lewis!
I just joined this forum and I would love some advice from you. My daughter is 4 and has a very difficult time with sense of touch. Clothing is the most difficult issue and I feel as if we have tried everything. If you could give me an insight into your experiences I would truly appreciate it. When you said you remember throwing fits and being aggressive this is just like my daughter. We are out of sorts and not sure how to respond any more.

Jackie

(03-08-2015, 02:14 PM)lewis27 Wrote: Hello,

My name is Lewis, I am 22 years old and I'm living in South Yorkshire but originally from South Africa. I cannot believe I have found this forum!!!

1. What brings you here?

Hopefully to meet other people like me, as I feel very alone with this. No doctors or therapist in the UK I have been to have ever even heard of SPD.

2. What is your relations to someone with SPD? Do you have it? a child of yours? Do you treat SPD kids as a professional?

I suffer from SPD.

3. Share a little of your journey if you'd like.

I was diagnosed with quite an extreme case of SPD when I was about 3 years old when I was still living in South Africa. The specialist was convinced I would grow out of it when I got older. Although I have got better asI've grown older, I still feel it cripples me.

4. Is there any immediate help you need?

I would love to meet another person with SPD. I would also love to find a therapist in South Yorkshire that deals with SPD in adults.

5. SPD doesn't run your life! What are you or your child's gifts? Interests?

I am extremely obsessive with planning. I have to plan everything, down to my routine for getting ready for work in the morning, all the way to how I am going to get a promotion at work or even weekend activities. I cannot stand anything being left unplanned or unorganised. I think this is a curse as well as a blessing but its helped me to achieve many things in my career especially at my young age of 22.


6. What do you like to do in your spare time? Any hobbies or interests?

I love cars, I love working on them because I know I'll do it properly. If I leave a car with a mechanic I obsess about them doing a bad job and potentially making my car unsafe.


If there is anyone out there that has gone through this from a young age and is still dealing with this as an adult and has been lucky enough to have a diagnosis, please get in touch I'd really love to hear from you.

Or if you have kids and have questions about SPD I'll be happy to help where I can (I'm no specialist but I really can empathise with other people with this "condition".) I was an EXTREMELY difficult child.

I can still remember how extreme the sensations were as a child and the only way I knew how to express my feelings was to get extremely angry/aggressive or get extremely upset.

I had no idea why I felt the way I did about certain textures/sound/visuals/being touched/food and many other things that I didn't/still don't understand to this very day. I use to get frustrated why other people couldn't understand what I was feeling and it was all very confusing especially as a child.

So as stated, I'd love to hear from anyone dealing with SPD.

Best wishes,

Lewis

Hi Jackie,

Sorry to hear you are having a tough time. I think the first point of call is for you to get a diagnosis so you know what it is you are dealing with and start the relevant therapies. But your daughter sounds very much like me.

I remember my mother telling me that when I was still her in womb, if she was to wear too tight clothing around her stomach I would literally start kicking like crazy until the pressure from the tight shirt was lifted.

I think the most important thing to remember is that she can't help it. I know how frustrating it can be, as I can only assume at times it seems like she is just being difficult, well thats what my parents thought at times.

The only advice I could give you is to research as much in to the disorder as possible (just like you are doing now, by joining the forum ) to give you a solid understanding of how it can effect your daughters behaviour. Try to accommodate as much as possible. Try not to force her to wear certain clothes if she doesn't want to.

The secret is to make her want to wear the clothes! I know it sounds terrible but my mum could verbally manipulate me in to wearing certain clothes. I use to idolise my older brother so she use to use that to talk me around to wearing or doing certain things. She could say something like " This shirt use to be Justin's, it was his favourite and he gave it to you! are you sure you don't want to wear it??". And it worked quite well.

It 's also similar to touch. I use to HATE being hugged and kissed by parents/grandparents. But if I wanted to be touched then that was fine, I could hug, cuddle, kiss and love my parents all day. And then throw a massive tantrum the day after if my mum was to even so much as brush her fingers through my hair when walking past. I was instantly overwhelmed with a very intense feeling of anger, I would burst in to tears and start smashing and punching things. From the outside it seems "on and off" which gave my parents the impression that I was just being purposefully awkward and difficult.

Sorry I kind of went off on a bit of a tangent. But I hope some of my experiences provide some sort of help. But i think the first step is getting a diagnoses, so you can start therapy.

I really hope things get easier for you and your daughter, and wish you all the best. Let me know how you get on.

Regards,

Lewis x

(03-25-2015, 08:58 PM)jackiesgamble Wrote: Hi Lewis!
I just joined this forum and I would love some advice from you. My daughter is 4 and has a very difficult time with sense of touch. Clothing is the most difficult issue and I feel as if we have tried everything. If you could give me an insight into your experiences I would truly appreciate it. When you said you remember throwing fits and being aggressive this is just like my daughter. We are out of sorts and not sure how to respond any more.

Jackie

(03-08-2015, 02:14 PM)lewis27 Wrote: Hello,

My name is Lewis, I am 22 years old and I'm living in South Yorkshire but originally from South Africa. I cannot believe I have found this forum!!!

1. What brings you here?

Hopefully to meet other people like me, as I feel very alone with this. No doctors or therapist in the UK I have been to have ever even heard of SPD.

2. What is your relations to someone with SPD? Do you have it? a child of yours? Do you treat SPD kids as a professional?

I suffer from SPD.

3. Share a little of your journey if you'd like.

I was diagnosed with quite an extreme case of SPD when I was about 3 years old when I was still living in South Africa. The specialist was convinced I would grow out of it when I got older. Although I have got better asI've grown older, I still feel it cripples me.

4. Is there any immediate help you need?

I would love to meet another person with SPD. I would also love to find a therapist in South Yorkshire that deals with SPD in adults.

5. SPD doesn't run your life! What are you or your child's gifts? Interests?

I am extremely obsessive with planning. I have to plan everything, down to my routine for getting ready for work in the morning, all the way to how I am going to get a promotion at work or even weekend activities. I cannot stand anything being left unplanned or unorganised. I think this is a curse as well as a blessing but its helped me to achieve many things in my career especially at my young age of 22.


6. What do you like to do in your spare time? Any hobbies or interests?

I love cars, I love working on them because I know I'll do it properly. If I leave a car with a mechanic I obsess about them doing a bad job and potentially making my car unsafe.


If there is anyone out there that has gone through this from a young age and is still dealing with this as an adult and has been lucky enough to have a diagnosis, please get in touch I'd really love to hear from you.

Or if you have kids and have questions about SPD I'll be happy to help where I can (I'm no specialist but I really can empathise with other people with this "condition".) I was an EXTREMELY difficult child.

I can still remember how extreme the sensations were as a child and the only way I knew how to express my feelings was to get extremely angry/aggressive or get extremely upset.

I had no idea why I felt the way I did about certain textures/sound/visuals/being touched/food and many other things that I didn't/still don't understand to this very day. I use to get frustrated why other people couldn't understand what I was feeling and it was all very confusing especially as a child.

So as stated, I'd love to hear from anyone dealing with SPD.

Best wishes,

Lewis