bloodcoveredprincess Report post Posted January 17, 2012 Hi All My son 15 is newly diagnosed with Aspergers. He was under CAMHS when he was little 7/8. At that time I asked them if he had a form of autism, but was assured that he did not. The diagnosed ADHD - they wanted to give him ritalin, but I would not allow it as they had not tried anything else. He also had some other medical issues and his attendance at school was down to 63% because of these. The education authority did not offer any help so we took him out of school and home educated him for 6 years. At 14 he decided he wanted to go back to school. His other medical issues has settled down so he made the arrangements for him to go. He started in September 2010. He settled in really well and did great for the first term (although the school thought he had problems with socialising - he did not think he had any - his version of socialisation is somewhat different to theirs!). When he went back after Christmas 2010, he started with a vast range of physical symptoms. He has had the most terrible year. While trying to find out what is wrong with him they have discovered that he has aspergers. We are waiting for him to see the Chronic Fatigue Team (we think he has fybromialga or something similar). He has only been to school for a handful of days in over a year. I don't know how to help him. We are trying to deal with all the medical issues and help him to deal with the aspbergers as well (although I don't really see that as something to "fix" - it's part of who he is and he's great!). I wonder if when he went back to school he had some kind of sensory overload and the other symptoms are somehow related to his aspergers. I need all the advice I can get. I am so frustrated!!! When I think of all the years I could have been helping him to understand and cope with his aspergers and I was trying to help him with the wrong thing! Please help this desparate mother. Quote Share this post Link to post Share on other sites
pwag20 Report post Posted January 17, 2012 Your story is quite similar to mine! Except I have a Daughter who will be 16 next week and was diagnosed with ASD just over a year ago after an initial diagnosis of ADHD at age 5. I too feel sad that over the years the symptoms of her ASD have never been handled in the right way by either me or anyone else but how can we have done so if we didn't know!? All I have tried to do since her diagnosis is learn all I can so that I can adapt the way I handle her behaviours. I also fought for a place in an ASD unit instead of the mainstream setting she has always had such a terrible time with and got agreement for her to repeat year 11. Does he have a statement? How are school managing the situation? Is he in mainstream? With regards to the fatigue how does he sleep at night? My Daughter hasn't slept well ever which resulted in her sleeping in school (sometimes for two hours at a time). However, last week we discovered the joys of circadin and she has slept thought the night every night since!! I know how it feels to be desperate. It's like riding a roller coaster and I'm currently coming out the other end of a really bad time. Be kind to yourself Quote Share this post Link to post Share on other sites
butterfly73 Report post Posted January 17, 2012 (edited) Hi BloodcoveredPrincess, Welcome!! And sorry for overloading you.. it's in my nature to wanna help :/ It is very useful to find out the following (tip: use a diary for a week) * Sleeping: At what time did he go to bed; how long does it take to fall asleep? What did he do the hour(s) before sleeping (usully computer/TV, which is not adviceable for a good nights rest) Does he sleep during the day (or even at school).. How often and how long? * How are his eating habits? And when does he eat.. Regular schedule or just when he feels like it.. * How healthy is the food he eats.. Enough greens/fruit, and little fat * how is the daily routine overall.. Structure is good for everybody, especially people with ASD and/or trouble sleeping. * Another thing which is important: exercise.. On a daily basis, what time is spend on sports/walks/cycling/... * How often is your kid outdoors and how long.. (melatonine deficiency is rather common in western society!) If you read my text.. I learned in august that certain weird muscle lapses, which progressed very slowly over the years and suddenly progressed quicker, that I have a sleeping disorder. So I do know how important good sleep is. I do sleep the hours.. more sometimes, but quantity isn't the same as quality! I sometimes wake up between 5-7 times.. I wake up during REM.. That is exhausting after a while.. I thought I had burn out because of starting my own firm.. It only added to the mix. NB: For everyone on the Spectrum it is necessary to know what gives you energy.. and what drains your energy. It's only logical to put energy in what gives you energy ;-) Eventhought that means straining yourself and do work out (cycle/walk/swim/...) It als clears your head.. worrying and going round in circles drains your energy too! It helps me to write stuff down, to clear my head also.. (and meditation, started out with a tape though to learn some focus in that.. meditation is not easy! Though highly useful, I've noticed ) What drains energy? * toxines, not only on or in food, but also pollution of noice, light, radiation from cell phone, microwave) or certain fillings (containing mercury) in your tooth.. * unhealthy eating: it slows your digestion.. (which in itself is a vicious cycle..) thus you get less energy, vitamis, minerals etc from your food.. combine that for instance with not getting enough physical exercise.. the bowls, muscles aren't stimulated.. (when you move.. certain parts can get cut off for a little while, then the blood rushes by extra fast.. clearing away stuff that shouldn't have been left behind..like toxines..) ** more specific.. No refined sugars, no caffeine, no refined grains for they are detriment for a healthy sugar level and for the balance in good/bad bacteria in your bowls.. For a lot of sensitive people.. dairy products are not very good for your intestines either... Thus so many lactose intolerant people! * Being succeptible for infections: When you are sick more often..that takes a lot of energy to heal.. If you don't help out your metabolism by adding extra vitamins and minerals.. you drain your body..) * Daytime is for work and play (production of cortison)! Nighttime is for sleep (production of melatonine).. Don not disrupt your rythm and with that your metabolism.. * Stress is also adding to the vicious cycle.. stress intervenes with good sleep.. not enough sleep adds to stress.. It also disrupts your hormonal system.. * emotional bagage or blocks (for which professional help is adviced) * yóu know what you can handle and what not.. how your motor runs and when it's in need of a time out to recuperate.. Listen to yourself and your body! Do not combat yourself on internal issues what you should do according to others: that is even more draining.. Draw the line and adhere.. * It might sound weird.. but bad mouthcare is a mayor energy drainer!! Even the first signs, as gingivitus, red swollen gums can make one tired. Let alone if it progresses into parodontisis.. Apart from that..infections cause germs to enter the bloodstream.. * Be very aware that we process more info in one day compared to people in the Middle ages!! We are constantly bombarded with sensory input: TV, radio, collegues, road signs, adds, cell phone, internet.. There is such a thing as too much of a good thing.. Plug out and get some down time, in a quiet surrounding.. Recreation is meant to re-create yourself! Get a massage, read a book, listen to soothing and soft music.. * aging takes it toll too.. Keep young by keeping fit and by adhering tto what you've just learned above! Be aware what works for you, and avoid the thins that drain your energy (or make sure you can recuperate asap!!) * For the ones who have pets: do not allow them to enter the bedroom! It will influence your sleep.. Also interesting: http://www.wikihow.com/Sleep-Better Love, B'fly Edited January 17, 2012 by butterfly73 Quote Share this post Link to post Share on other sites
bloodcoveredprincess Report post Posted January 17, 2012 Thank you for the replies...... It isn't that he has trouble sleeping at night and that makes him tired. He sleeps day and night. On a normal day he sleeps about 19 hours, on a bad one 23. On a really good day he might be awake 8 or 9 hours, but those are very few and far between. Even when he is awake he is exhausted. He falls asleep mid sentence and while eating. He has only been into school about 10 times in the last year. For the last few weeks we have had a tutor come for 2 1/2 hours once a week. He can sleep though part of the session and has to go to bed as soon as the tutor leaves. Before that we have had no support with his education at all. Quote Share this post Link to post Share on other sites
butterfly73 Report post Posted January 17, 2012 He might be sleeping the hours, or more (like me.. but more severe..) Sleep has several levels. He does sleep the hours, but probably not getting deep enough sleep, thus not getting the rest he needs, thus increasing the hours. This definitly sounds like a sleepdisorder.. I presume narcolepsy, a part is known as Excessive Daytime Sleepiness (EDS). Hasn't anyone mentioned such before? I think it's advisable to do a sleeping test.. http://www.narcolepsy.org.uk/AboutNarcolepsy/Whatisnarcolepsy/ExcessiveDaytimeSleepinessEDS.aspx Quote Share this post Link to post Share on other sites
pwag20 Report post Posted January 17, 2012 Wow this is not something I've ever experienced and definitely does sound like some kind of sleep disorder. Do you know how long you have to wait for a specialist to see him regarding the sleep issues? The only thing I would suggest is chasing them up (continually). In my own experience I have found that you need to keep on and on at professionals or they forget about you in favour of those that won't let it drop. Ring them every day if you have to. Tell them his education can't continue to suffer as a result. Its hard when there are so many different things to tackle and at times I find it easier to try and tackle one small thing at a time. Take whatever is troubling him and/or you the most and start there. In your case currently it sounds like the sleep thing. Perhaps some of the other difficulties you are facing will improve as a result. I myself find it so hard at times to tease apart whether a behaviour relates to the ASD, ADHD, language impairment or just plain teenage girl hormones. I do know that just having a rant and getting some advice or opinions from others can help. Even if I've heard and tried everything suggested there are sometimes things that I'd not thought of. Quote Share this post Link to post Share on other sites
RainbowsButterflies Report post Posted January 17, 2012 Hi and welcome (null) Quote Share this post Link to post Share on other sites
trekster Report post Posted February 5, 2012 Welcome Your story interests me because i thought i had just ME/CFS and fibro in addition to my Aspergers when it turns out it was HMS/EDS. Does your son frequently injure himself ie tripping upor spraining joints? Totally identify with your issues with regards to what symptom is a result of which disability. My brain fog could be a mixture of accidental milk ingestion, pain meds, HMS, fibro or dyslexia. Good luck with trying to find an answer to your sons issues. Quote Share this post Link to post Share on other sites
Special_talent123 Report post Posted February 5, 2012 welcome to forum. i have autism, dyspraxia and LD Quote Share this post Link to post Share on other sites
