Samuel's World

Lynette, I have written a short intro to Samuels World here

Dear Lynette,
Sheila has recently been in touch with Mum and she gave us details of this site and her e-mail address. We have had a quick perusal of this site and found the poems moving. The other pages were very informative and must be of great help to other parents/relatives of children with the same problems.

God bless you and remembering you all in our prayers.

Ive just come on to this website after seeing it in the west sussex county times. I live in Horsham so this is such a huge relief to me to maybe have some contact with others that know, not just think they know just how we all can feel at times, rollercoaster is best way to describe it.
My 11 year old son has tourettes sydrome and obsessive compulsive too. love to chat to others. Many thanks June

Hi June - Congrats on being the first person to find this website through the article in the West Sussex County Times, I am so pleased and excited to finally have this venture up and running!! Its also great to hear that I am not the only person in Horsham to be going through the ups and downs. There will also be a editorial in the free "Family Grapevine magazine" soon plus I have also been busy in town today putting posters up in family areas advertising my new Tourettes and other related disorders group which I hope to host at my house every month for anyone mum/dad/carer to pop along, have a cup of tea and a cake and meet new friends. Exchanging ideas and support makes all the difference!! June you are more than welcome to be part of this and if you would like to meet up for a coffee in town anytime then feel free to either email me via the comments section or email direct via my own email address which has been sent to you directly. I look forward in hearing from you.
lynette xx

Hi there! I heard about your website through the news. I have a broadly similar page (started a few weeks ago). I'll put you on my links. Good luck.

Hi James - Glad the news article has helped in promoting this new project of mine. Thanks for putting a link on your blog page, it will help more people notice the website which is the whole purpose - to reach out to anyone regardless of location.
Best Wishes
lynette

Hi Lynette,
Great site - I also found it through the article when searching for news for the site I set up a few months ago. I've added an article about your site. Good luck with it all!

Hi Paula, Thanks for your comments re the site, what a wonderful website you have as well, full of life and excitement which is what it is all about! I have also added a link to yours which I feel be useful for the readers especially your diary notes - very inspiring!
I am sure you will have continued success with it and my blessings to you and your family.
lynette xx

hi lynette just read your artical in the county times i live in kirdford a farely isolated place and have two boys. my eldest is 7 and suffers from servear autism asperger syndrome and o.c.d.his yonger brother of 4 doesnt understand just yet to be expected.we all find it hard it must be hell for my son.hes been excluded 7 times this year before the summer holidays.the education bord wont move him to a special school even though his violance is aimed at adults more than his peers.this is worreing.your website is going to be a god send to all of us that feel ignored ,cut off.angrey,and confused.

Hi Rachel - Thanks you very much for your kind comments regarding Samuels world, I am pleased you saw the article and found it reassuring. I hope by having this website going you can feel less cut off and feel amongst familes who understand and are in similar circumstances. Our daughter Grace still finds Samuel hard to understand and it does take time but she is the older one. We are also just starting the statementing process due to normal mainstream school being too much of a routine change for Samuel to keep adjusting to and so I understand entirely on the stress this can cause!!. I am letting everyone know that as well as the website I will be hosting a coffee morning every month for anyone who wants to chill out for an hour or two, Kirdford is just down the road and so you are more than welcome to pop along - just let me know.
lynette xx

Hi there, great website, well done for bringing these disorders to peoples attention! I'm a mum to an 11 year old son with ADHD, he has had the diagnosis for 6 years, Ocd and Tourettes! He manages at main stream school in Horsham but it never cease to amaze me the level of people's ignorance, mainly adults I hasten to add. I am an LSA at a school for children with social, emotional, behavour disorders and obviously have first hand experience dealling with these problems as a parent, so any support or advice I can offer is yours. As a parent I found medication the biggest mine field.
Well done, keep up the good work!!
Michelle

Hi Michelle - thanks for your kind supportive comments, you sound as if you are the fairy that you can keep in your pocket for constant support and reassurance!! It's such a relief to hear from another mum in Horsham and especially from another mum who sounds abit further down the line! I am glad that your son is managing in mainstream school - unfortunately Samuel is not and is struggling to cope with the change of routine! and everyday topics that the class get involved in. Because of all this we have started the statementing process with the support of the school and it has been reccomended by the Tourettes Specialist and other professional bods that rather than have a one to one helper due to the severity of his disorders he would cope better in a special needs school - I have started to visit one and have another to see next week. As you say - yes medication is a minefield!!!!!!!! We have just started on yet another one. I also have realised that if people were more open and understanding half of the problems we encounter as parents today would not be as much of a trial than they seem always to be at the mo. It's a bit like a horse jumping competition - the jumps start low but gradually get higher and higher to jump and are more tricky and challenging the further you get with you often falling off and having to start all over again! I hate to be a pain but if you have a spare minute for a quick coffee in town I would be very grateful!! You sound as if you have a gold mine of information and that's priceless!!
Your job as an LSA must be very rewarding I am sure.
Best Wishes
lynette xx

Hi, my name is Helen,
I don't live in the UK but I do have family in Folkestone, Kent.
My husband is from there actually. Well, I live in the USA, my oldest son was diagnosed with Tourettes at 9, he is now 10 and has TS, ADHD, OCD and conduct disorder. He has a hard time dealing with the kids picking on him is main stream school but really doesn't want to even try a different school system. He is on 3 different meds now for the disorders and the one seems to control the TS to some extent but you still see the tics.. His biggest at the moment is a full body "shiver" and akward stance in his walk. I know with out the meds they would be so much worse and the facial tics would be completely uncontrolled... which in turn would open doors for more critisism. My middle son who is 8 was just recently diagnosed with Aspergers Syndrome, ADHD, ODD (oppositional defiance disorder) and conduct disorder. He does well with the one medication he is on. But he is "quirky" to the other kids in school.. I also have a 20 month old who seems ok.. just a little OCD.
It is early to tell.. I found this site thru Yahoo and hope that it will open me to a support group as I am just at my wits end with stress ..

Hi Helen - Its great to have you and welcome to my home! Kent is not far away from us - its a small world! Its lovely to hear about your family and I can understand completely about how stressful you feel sometimes, out of interest what medication is your son taking at the mo! It is a minefield with tablets and possible side effects that can occur- it is all about trying to get an even balance of stability for you son's needs and for all in your family, it is hard to know what is best.....I also have a lot of empathy for your son re school and the constant torments from peers - it is a hard distressing time and one I hope Sam will not have to go through if we can move him but the Statementing Process over here is a hard battle to win!!
Helen, you can email me direct or via the comments section on any page if you want to chat some more at any time.
Welcome aboard xx

Lynette..
my son at the moment is on Tenex, Zoloft and Resperidal.. in the hope that we can take the Tenex away and try a stimulant as the Resperidal will help the TS stay controlled.. as you know with most ADHD meds they tend to make TS worse...
We tried to do it with out meds and it just got so much worse..
My middle son is on ADDerall for the ADHD and that is also helping with the Asperger's a little... not as much as the Resperidal could though... but his attention is much better..

Hi Lynette, My name is Karen and I live in the US. I also have a son named Samuel. We call him Sam for short. He will be 14 in January.He has a diagnosis of TS, ADHD, at the moment they are thinking of removing the lable of OCD and adding aspergers. I found your site through TS parents. We have had a time of it. Although his tics are much better in the past year, I am just learning about Aspergers. Alot of it makes sence to me, now that I am reading about this diorder. Sam has never fit in socially. I removed him from public school, because of the bullying. We are starting an on line school at home so he is no longer subjected to the tourment he received. Sam has always had a hugh interest in one particular subject at a time. He knows everything he can know about something he is interested in. It will consume him. My interest is to find a way to help him learn and be successful in life. He is interested in the Titanic. But how can something like this benifit his future. I want to find a way to help him do well with other subjects as well. He also likes learing about World War II. But the things he is not interested in, he fails miserably. On his grade card was more D's and F's then anything. His IQ has been tested and It was high. I was told between 80 and 90 was normal. He tested at 113, 115, and 121. I am full of questions. It's hard to know where to begain. I am glad to find your site. I can use all the help I can get........... Karen

Hi Karen - It's lovely to have you with us - glad you found the site through TS, you are not alone and I hope you can find some useful tips on my site.
lynette xx

Hi there, I live in Middlesex, My 7 yr old son has a mild form of TS. The way I have been able to control and help my son is by taking him to see a cranial osteopath who uses the healing method along with homeopath remedies. Some days he is absolutley fine others days tics come out. But he has no other medication and it seems to help him alot. i'll quite happily give you lady the we see who uses the healing method. Email me sometime. Would love lo her from yuou. Regards Sangeeta

Sangeeta, Thanks for your post. We are in the US. I'd like to know more of what you are referring to, and even more I'd love to come to the UK and check it out, but I'm afraid that's out of the question! Tell me about the cranial osteopath. What does she do? Does she help with a diagnosis, or does she prescribe medication, or both?? I have had Sam to several doctors and now to a psychiatrist. He is currently not on any type of meds. We are hoping to keep it that way. Sam was on ritalin and Zoloft for about 5 years. He got to the place where he had troubles eating and sleeping. Now with the new diagnosis of Aspergers and with the fact that he may be outgrowing his TS, we are told that right now he does not any meds. He is happy about that. Sam will be 14 in January. We are seeing that his tics have almost disappeared. We are well aware of waxing and waning. But I think he is also beyond that! I have my fingers crossed!!!! We are just learning about the Asperger's. I've been telling Sam that there are some positives with this diagnosis. I think what we need to do, is to run with it. Sam is very interested in History. I guess it might be his niche. I think if he puts his mind to it, he could make a career of it. This is where I have placed my concentration right now. The psychiatrist has told us that there is no pill to help Sam with his lack of social skills. It will be up to him to learn how to be more social. Right now he is very much satisfied not being. Just this last week he has been approved to begin his lessons at home. He will be doing his school work on line with a state wide program called ECOT It is a free program provided through our state of Ohio. Sam's biggest problem attending school was that he was being bullied. I am thankful that he no longer has these worries. Excuse me for rambling on! I feel like I so much to address!! Finding this site and also TS parents have been so helpful to me. I also have had advise for others, which makes me feel good........ Here's hoping you have a Wonderful Holiday. I know we will, my whole family is off work and out of school for the next 10 days!! YEAH!!! Take Care..... Karen

Karen - It's great to hear that your son Sam's TS is nearly over - it gives us all hope!!! It must be a relief for you and your family to just be able to concentrate on maybe just the Aspergers and social side of learning. I wish him success in all of his exams/schooling. My brother was diagnosed with Aspergers very late in life (40's) and knowing about this from an early childhood age does help as the child and family can adjust and help each other understand! If the whole world could understand would'nt everything seem easy!!
Have a great Christmas and a calm 2007!! lynette xx

Lynette, Oh yes !! How I wish that the whole world would understand our kids!! If I could have just one Christmas wish, It's what I'd wish for. I am trying hard to understand Sam. I think the difference in knowing, is that I am not so quick to judge. He most definitely has some quirky ways, and in the knowing of this, I realize that there are times I need to just accept it and go on. I get so frustrated with him. I just want him to stop. To quit making such big issues of everything. At our Family Christmas party last night he was not satisfied with the greed gift he received. Greed is a game we play every year. It's where you can "steal" someone else's gift when your # is called. It's all in fun. Sam wound up sitting in the van for the last hour by himself, because he was mad. Then he was mad at himself for being mad. I was patient with him, and listened. His cousin offered to give him the gift he was upset over. (a very nice gesture) I appreciated it, but I told him no. I think at the age of nearly 14, disability, or no disability, if he'd had his way, it would have only reinforced his negative behavior. It's hard, I only want him to be happy. It seems that he never is...... Lynette, is it normal to out grow TS? Do you know? If I am remembering right, when Sam was diagnosed at the age of 7, I think that's what I was told. That he could either get better or worse at adolescence. I am hoping I am right? I truly think this is what is going on. How is your son doing? Is he ready for the holiday? With all the excitement, I think it's hard on them. My Sam has been about to bounce off of the walls!......... Take Care...... Karen

Hi Karen - Yes we have also been told that Sam's TS could go either way but it usually gets worse around the age of 11-14 yrs. I just keep hoping that with constant therapy/guidance from us Samuel can start to understand himself especially with his anger rages. We have just had the go ahead to have a educational professional assessment Sam in school so that we can obtain a statement for Sam which means he will be able to move school and go to a special school which has a smaller class and more teachers who specialise and understand! I am hoping he can move for Sept 2007. It is a hard long battle though with constant letters/reports. The teasing has started in school for Sam unfortuantely due to Sam not able to sound his "l" words properly. For Samuel - even having to do a spelling test is now proving too anxious a moment for him which then brings on his tics. He is looking forward to Christmas- we are on countdown here counting every hour! He has already built a tower of his presents and rearranged them countless times! Numbers plays an important part of his life with everything in the world having to be even or just right. Like any event Sam finds it hard as he never knows what is going to happen next - this usually leads to his rages which has nearly knocked the Christmas tree down twice!! The poor fairy on the top !!!!! Samuel's latest tic is a wolf whistle and having to hit himself, am hoping this one will go away! I agree with you when you mention that you are always trying to understand your son - it is very hard especially when they sometimes do not understand themselves! Can we ever truly understand!! It does require immense patience and I am trying to do the reverse of my actions - rather than shout which is the thing you tend to do the most when something has happened I am trying to whisper and do the opposite hoping that this will not give Sam the negative attention he seems to need....You do tend to try anything and everything as a diferent method - it it does nothing to help at least it might satisfy my sanity!! On to a good note of positiveness - I have been asked to be interviewed for a new TV doc due to be televised over here later next year regarding TS and how the family copes - hopefully this will help other families in similar circumstances and maybe will help teachers etc understand abit more about the world of Tourettes. I will mention this on the website when this has happened. January will be a hectic month of reports, assessments, hospital visits etc.
lynette xx

Merry Christmas Lynette and Family! It was so nice to hear from you. Sam is showering and on his way to bed. He is so exicted. He is the largest 4 year old I know!! He and his sister Maddie got to open one gift tonight. It is tradition. Sam says he is embarrassed of his behavior last night. I was so glad to hear that from him. I think I made the right decisions, in not letting him have his way and also for keeping my composure. It's hard. He makes me so frustrated. I think that Sam may have found some maturity, It bothered him that he acted badly. I think that might be a step in the right directon!!! I like your advise on whispering. I'm going to try that. .....Please keep me posted on your interview. I'd like to know how it turns out......Here's hoping you have a Woderful Holiday. I hope that your Sam has a good time, and I hope Santa is good to him. My Sam is getting a tea cup and saucer from the Titanic. I know it doesn't sound like a typical gift for a 13 year old boy, but Sam is not exactly your typical boy!! Talk to you later ..... Merry Christmas Karen

Hi, Lynette,
Samual sounds just like my son Kieran,but I am still fighting with the NHS to diagnose him(they dont want to "label"him .Kieran is now in yr 4 & will be 9 in July,his ticks also started in yr 2 and he is struggling with school. I first had concerns about Kieran when he was 6weeks old, and I feel like I have been banging ny head against a wall for the last 8 yrs.All I want is for Kieran to be seen & diagosed,so that he can get the education & help that he deserves.What is the name of the Doctor that Diagnosed Samuel ?

Hi Jo - What a stressful time you seem to be having!!! We originally started seeing various doctors at a hospital near to where we live but eventually due to constant pressure and physically having to take Samuel "ticcing" in their presence and making known that the whole family were being affected and that Samuel was depressed we finally got a referral to St Georges, London. That was after we had tried various medications first mind - about 6 months of trying! We now see Professor Mary Robertson who the leading specialist in TS - a lovely kind caring lady who when you speak to her understands!!! That is the all important part - being understood and supported.... Please feel free to email me direct if you want to chat at any time. We are just going through all the stamenting process at the mo and are awaiting the educational psycologist report!!!Unfortunately nothing is as straightforward as you would of hoped for - keep battling on!!!! You know best..
lynette xx

Hi Lynette. My name is Jan and I live in Chichester. My son, Matt is nearly 10 and started with his tics when he was 3. Like you I took him to doctor/optician/neurologist wondering what on earth these bizarre eye movements were all about. Then he started with the shoulder shrugs and strange arm movements. By the time we were referred to a paediatrician, I had already done tons of research myself and found out that they were tics. He is now 10 and we have been through many ups and downs with various motor and vocal tics, rages, incredibly oppositional behaviour, various obsessional thoughts - and through it all I think I would have gone stark staring bonkers without the help I found from an American site called "The Association of Comprehensive Neurotherapy" in the States. You can also get to them via "latitudes.org" and they produce a really good newsletter which I subscribe to. I believe totally that the changes I have made to Matt's diet and the implementation of a vitamin regime have kept him off medication. We are currently waiting for an appointment at a Centre for Environmental Medicine to test him for various vitamin deficiencies, food intolerance, heavy metal hair analysis etc. I hope the results of this will give me a better idea of what is going on with him.

I am REALLY sorry if what I've said here is already well known to you - it's just that the help I found from the Latitudes site really lifted me from rock bottom and gave me hope to try some things which had helped other children in the hope that it would help my son, and I am convinced it has.

Kindest regards!
Jan

Hi Jan - Thanks for your email, its nice to hear from someone who lives not too far away as well! Thanks a lot for the very useful information regarding the various methods you are using due to the american site you found - I will investigate this immediately - everything helps!!!
How is your son coping in school?? also how is his TS now !!!
Once again thanks for your input on this site, much appreciated!!
lynette xx

Hi again! Matt is developing strategies to help him cope at school, he seems able to control his tics to a certain extent and make them quieter - he' ll take a trip to the loo to let them out a bit and then lets them go a bit more in the playground. Over the last 5 months or so he has developed a very loud snorting tic which I hadn't heard before and a gulping tic. I have in some part put this down to stress and anxiety as he has lost a much loved Grandad and much loved Godmother to cancer in the last six months. He has become more obssessional too and anxious and we have had some pretty impressive rages...! This is why I requested an appointment with an Environmental doctor to see if we can pinpoint what might be triggering - in addition to his grief that is. We are also waiting for an appointment for some cognitive behavioural therapy - where I hope they will help Matt substitute another less intrusive noise for this one. I also think that his increased tics and anxiety might be because I have been a bit lax with his diet - we had him tested a few years ago for allergies to common allergens, he was off the scale to pollen (and his tics are always worse when there's pollen around so we have put a HEPA air filter in his room to help with this and it really has helped) and had a low level intolerance to milk and eggs. He doesn't like milk anyway so not really a problem but over the last year or so we've been having pancakes for breakfast more and I'm wondering if he's reacting to all the extra milk he's had. I have changed to rice milk now.

On the Latitudes site I mentioned before, Sheila Rogers has written a very good article called 'Finding Triggers for Tics' - I found this really useful.

SORRY this is so long...!!
Jan
x

Hi Jan - You have some very useful information for everyone who is in a similar state of despair! Diet plays a big part in this and getting Sam tested to see if if has a intolerance to a specific food might prove constructive. Sam also has rages - do you have a coping/calming method that you or your son uses?? I have also heard of the cognitive therapy - tries to substitute one tice for another - that would help him a lot especially when they are in their teens which can always be a sensitive time along with all the hormones that seem to trigger around that time. Do let me know where you will be going for the therapy once you get started! I will look at that article - thanks for that!!!!
Feel free to email me direct if you ever want to chat - I have about 5 mums who live all over that cannot meet up but would like to belong to an email group where we can hear each others news.
Take Care
lynette xx

Hi Lynette. We have tried and continue to try various strategies for heading off a rage - once it has got going there really isn't a lot we can do except try to make sure that he doesn't hurt himself or us and wait for it to blow over. We talk about counting to 10 when he feels himself getting hot under the collar, removing himself to another room, he has a punchbag which he uses to vent his frustration/anger. He "writes" out his anger quite often in an exercise book (best not to read it afterwards though!!). I am finding that as he gets older, he is able now (sometimes) to exercise more control and you can see him visibly trying to control his anger. If I stay calm too I think it helps him get through it quicker - although that is by no means always easy as anyone who has an oppositional child will know.

We are going to a practice in Woking for the cognitive behavioural therapy.
Kind regards
Jan

My son Austin is nine years old and has been diagnosed with tourettes since age six. He has had four bad strep throat cases in three months and this article makes me wonder what else is going on? I hope I can get to the bottom of it even his attitude and tics have worson.

I am 14 and doing a report on Tourette's Syndrome for school. I would like to thank you for all the wonderful insight you have given me on what life is like living with TS. It has allowed me to better understand the topic and not just facts like the syptoms or diagnosis. Thank you again.

Hi Maggie - Thanks for your kind comments - having a website like this means others can hopefully understand.
Good Luck with you Report!!
lynette xx

Hello, I just found this site today. I am from Loughborough but now live in California. My son is 19 yrs.old, with T.S., O.C.D., Impulse Disorder, etc., etc. ! His throat clearing tic gets so bad it can make him vomit...his 'washing' thing drives my husband crazy....30 min. showers, flushing the loo 6 times a go, hand scrubbing with a full running tap....need I say more ? !!He is working part time, so we are thrilled, but it is such a struggle for him, it breaks my heart....We just take it one day at a time and creep forward..... Good Luck to you all ! We will survive !!! Carol

Hi Lynette & Lester,
Mole Valley CAMHS think this is a great Website. We will certainly pass it on. Well done for creating something so useful to other families.
All the best to you and Samuel, Patricia

Hello,
I would like to join your forum, my daughter is 9 and has tourettes, I'd like to talk to other mums and also try to find a pen pal for my daughter as right now she thiks she's the only one!
Thank you,
Carla Laughton

Hi i have a partner with severe ts + and a son with ts + please could i register on the forum

really interesting site, needing someone to talk to about my 12 year old who has had tourettes for 2 years, also 'traits' of adhd, ocd and in last two weeks coprailia(swearing tics) which i am finding very hard to deal with. he is finding new secondry school really hard, mainly containing his tics he will not 'come out' about his condition, and is desperate not to let any come out!? at the age where he wants to be cool and fit in. help!!

Hi Sarah - thanks for your comments regarding this site for families/carers. Please feel free to email if you would like to join the forum and I will explain the process for you. There are lots of mums and dads on there and it is a friendly place where you can feel it is easy to chat and get advice.
Kind Regards
lynette

Hi Lynette

I have a son who is 6 years old and been diagnosed with Tourettes, Aspergers, ADHD and Dyspraxia. I think your website is great. Does Samuels tics wax and wean? My son Luke seems to go through stages where they can be really intense and often has to have pain relief as his main tic is throwing his head backwards. I wonder what the long term effect will be on his mucscles/joints! Does anyone have any insight into this? I will be adding your site to my favourites and check in on a daily basis. Thanks.

Hi Lynette,
I work with Katie at The Springboard Project. I have met Sam at Grasshoppers (and last Thursday!) and am a big fan. I wanted to let other parents know about The Springboard Project, especially those local to us in Horsham.

We run after-school activities, holiday schemes and saturday clubs for children with additional requirements. It's a great respite option and the chance for children to meet others like them so they don't feel "different" all the time.

If anyone would like more information on the Project, pop on the website or ring us (01403 218888) any time.

On a different note, if you are ever after a babysitter who has experience working and caring for children with a disability, do give me a call. I am a youth worker based at The Springboard Project and see first-hand how tricky parents find it to find sitters who know how to handle/play with their children. So don't dispair, just get in touch.

All the best to everyone here.

Laura xxxx

www.springboardproject.com

have found the site after a friend told me about it and just wanted to reiterate the brilliant work of Springboard. I live in Horsham and have a 7 yr old agressive autistic son, with severe language delay and other associated problems, although not adhd or tourettes. He has been attending Grasshoppers at Springboard for nearly a year and now goes in without a 2nd glance at me!!!! Also, if you feel able to leave your child and have an evening out, they can give you details of their volunteers who would be willing to help. We have used one volunteer so we could do our daughters 10th birthday party, and we are using her again so we can take our daughter to see the panto, and Zachary loved having her come to the house, and it is a very welcome break for us so we can concentrate on Chloe, without Zachary interrupting or destroying things. Am also here if anyone wants help or advise on autism and related problems, eg playgroups ( try Causeway Opportunity in Hills Farm Lane Horsham 01403 269548 they literally saved my marriage when Zachary was 2 ) schooling, bedtimes etc. Lynette, great website although have never knowingly bumped into you at Springboard, after learning about you from Fiona. Amanda x

I am a 36 yr old women, and I don't know when I started to have head movements. people would ask me why I move my head and my eyes, and some times I cought my self doing that too. I don't know why I do that I can't control that.I remember when I was a little girl my family use to make fun of me on why I move my head. What should I do?

hi i have just found out my sons have adhd and tics one of my sons who 10 blinks alot the other who twelve just has adhd any info or sites i can find out info from would help thanks i live in yate south glouc

I found this site interesting & upsetting also. But it's nice to see we're not alone. My son is 10 & was diagnosed with ADHD a few years ago. He now takes dexamfetamine & risperidone tablets but his body gets used to the dose & I find his symptoms come back again. Its funny my son blinks a lot, spirals his hands when hes on the laptop, clears his throat and sniffs but his psychiatrist has never mentioned tics. I found the Social Communication Disorder interesting so I looked it up. This sounds so much like Sam (my son). He has no idea of past, present & future tense. If he wants to tell me something it takes him ages to get out what he wants to say & sometimes then forgets what he was about to say. He also has learning difficulties at school but the rap team & psychologist say he's above the point at which they can statement him which is rubbish - he can't even do his homework or tell me what 1 less than 15 is!! I feel like I'm in a dark, never ending tunnel and I get upset everytime I think about him. Even writing this upsets me. Thanks for this site xx

Hi Angie

Thank you for your comments and I am glad you have found this website and it is helpful to you!! I must admit I have not done any new articles for a long time as we have had a fight in getting our son the right education but we have finally won our case so I shall be able to concentrate more on this site!
It is unfortunate that any medication our children start on the body gets used to the doseage - we have tried most meds and none of them helped long term. Most of the problems we had with Sam were because of how he was being taught and the environment he was in. You still have time to get a statement for your son and do not listen to the professionals when they say there is no point - that is nonsense!!! Everyone told us we would not get a statement but we never gave up although there were times when it was a strain and hard mentally to keep going!! We have had years of not seeing a light at the end of our tunnel but determined we kept on regardless and ignored what people said to us and battled on. There are associations who can be your advocate and help you with getting a statement as solicitors can be expensive!!! It is an upsetting time and I totally understand how you are feeling! If you want to join the forum please let me know and I will register you myself so that you can chat to other mums and dads. Please email me at any time - where do you live - UK?????
Above all take care of yourself and take each day as it comes!
lynette xx

Hi all.I've just been trying to research Tourettes on the net and came across this site. I hope someone out there can guide us. Here is our story:
Our 9 year old daughter started sniffing and clearing her throat about a year ago. We thought it had just become a habit so chose to ignore it. Since then,about 4 months ago, she started having sudden mouth opening tics.She would open her mouth full stretch and hold it for about 1or 2 seconds as well as blinking and rolloing her eyes. This continues but she has now started to shout "yes" quite loudly just suddenly out of the blue. She has begun to make other vocal noises aswell. She is fully aware of it and tells us that she can't help it and feels that she has to do it.The strange thing is, that she doesn't do this at school or in public; only at home or around her grandparents where she feels comfortable.We've also heard her repeating words to herself. We are very worried and are due to see our doctor very soon but I have begun to search the net for answers and fear that she might have TS & other related disorders such as OCD. She also gets very angry. My mother and other family members have told me not to worry and that I shouldn't diagnose her with TS myself and should see the doctor first. I hope they are right but having read upon TS it appears that she may have this syndrome.
Any advice from anybody would be great. Also does anybody know of a top specialist in London (UK) as I don't want to rely on the NHS?

Hi Chris
Firstly I am glad you have found the website useful and helpful. It can be quite daunting at first when you something happening to your child but are not sure what! Don't panic and take one step at a time! A lot of children do have habits which do form as tics and these habits do eventually go. A specialist/doctor in the field of Tourettes will generally say that a tic has to stay present for at least 3 months and most tics wax and wane which means a specific tic will come and go but will never go away. An example for you is when our son Sam started to whistle and this went on for 6 months and went as quick as it had come. 8 months later the whistling started again. Some tics progress from a jerk to another sudden movement of the neck/face or a snort might multiply into a clearing of the throat.
Tourettes tics are usually worse and are connected with anxiety! Sam rarely showed any vocal tics or movements while at school because he was anxious that everyone would stare at him and laugh - however he would suppress them mentally and when he came home from school we would have a conveyer belt of different tics being released in the car and all evening!! Before you go any further you should get a more specific diagnosis as you might be worrying over nothing. You firstly neeed to get a referral via your own GP and be insistant as some doctors will try to wave you away! You cannot get to see a specialist without a referral unless you go private and then you are talking at least £600 plus for an independant specialist. The referral can take as long as 8 months to wait but it is worth it. It will give you peace of mind and then you can move on. We go to St Georges in London and see Prof Mary Robertson - she has written many books and you can look her up on Google. Also The Maudsley have a clinic and Guys. Wherever you go the diagnosis will take at least 4 hours at the clinic but it will be give you a whole complete diagnosis covering all aspects at home and at school. There are usually lots of forms and questionaires to fill in. Start keeping a record of different tics/vocals that your daughter does and when during the day as this will help build up a picture. OCD is common with Tourettes and usually is connected. Sam often has to repeat a word and say something so many times - however this also comes under Tourettes as well.
Can I suggest you go to your local library also and get a simple book on Tourettes maybe quoting Mary Robertson as her books are easy to understand and are for parents before you go out and spend loads in a book shop!!
Try and stay calm - once you have an answer then you will be able to understand and you will be able to support your daughter in understanding herself as well. It can be a very frustrating time for them as they don't know why they do what they do and appear different to their friends which can happen in school. Stay positive and feel free to email me again. If you want to join the parents forum at a later stage to chat to others then do let me know.
Kind Regards
lynette

It is really sad that alot of people don't know about Obsessive Compulsive Spectrum Disorders and how badly it can affect suffers and their close ones. The first time I heard about OCD was when David Beckham came out of the open about his OCD. At that time, I felt that a few friends of mind where suffering from OCD, so I got interested in the subject.

And after researching further into OCD, I realised that David Beckham's case was not really that serious, as well as my friends'. I read testimonials on people suffering from OCD on a charity called OCD Action's website and how serious it sets back their lives. It is only after that I can really relate to what OCD sufferers go are going through.

The sad thing is that people suffering from OCD cannot come out in the open about it and suffer in silence as they perceive their condition to be tabboo. It is about time to make OCD well-known among the general public so OCD affected people don't have to suffer in silence.

I read on OCD Action's website that they are holding an Obsessive Compulsive Spectrum Disorders Conference (http://www.ocdconference.org.uk/) on 22 November 2008 which will help create OCD awareness among the public and sufferers and, thereby, increasing understanding on the condition.

I really feel that it's fair enough for OCD to be well-know just like all other conditions. And events like the OCD Conference are a step closer to making people understand how serious OCD is. When the disease is known, it is half cured.

Hi
I am a teacher researching possible reasons behind the 'odd movements', facial expressions etc of a boy in my class who is awaiting diagnosis but clearly has symptoms of Aspergers. I found your site after finding info about the higher incidence of Tourettes in children with Aspergers. Thank you. It has been a privilege to read and share all the thoughts and insights here.

I really really appreciate that you have taken the time to share your and your son's experiences. I have a 5 yr old daughter who at this point has been diagnosed with chronic tic disorder. I go through waves of sadness and confusion and impatience. So far her tics (vocal and motor) are not really noticeable as she tries to hide them and little kids are kind of active anyways. I just dread the day when other kids or adults are disrespectful toward her. I know it happens to everyone (teasing), but this just would seem too easy a target.

Again, thank you for sharing your side...it's a BIG help to a parent newly exploring this issue.