Guest guest Posted September 18, 2000 Report Share Posted September 18, 2000 oh wow kayte i know exactly what you mean about fantasies about the future....my son will get married, work in a mail room of an office ect.....he still might i can't predict the future but it seems easier to know the outcome when your dealing with one dx and learn all about it. my heart is with you tonight too, i am still new at this trying to learn. please take care Marie mom to jared 8 with DS and ASD diagnosed this summer. > Thanks so much everyone for your encouragement. It means so much more when > it comes from people who've been there. What was so sad for me about the > assessment was all that reminder of before. I really remembered how > he used to play. It brought it home to me how little progress he's made in > the last 2 years, despite all our efforts. I'd got used to having a kid > with DS, I could even fantasise about his future - of course he would be > fully included in our local school. He'd be invited to lots of birthday > parties, he'd have friends even girlfriends. A friend said to me today I > just need to change my thinking to 'Autistic and Proud' > Anyway, you and your children are all in my thoughts > Kayte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 , I just want to hug you and I am sorry to hear of your diagnoses. (((((hugs))))) Chelle (4) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 ###### Hand Raises Meeeee !!!!!!!! Welcome to the club. Its a very nice club!!! You get to ache all over ! You get to be fatigued all the time ! You get to have other diseases on top of it ! It's such a grand time !!!!!! NOT !!!! Here are the fifty signs of Fibromyalgia: x-I Have x 1. PAIN x 2. FATIGUE x 3. SLEEP DISORDER x 4. MORNING STIFFNESS x 5. COGNITIVE OR MEMORY x 6. IMPAIRMENT IRRITABLE BOWELS x 7. CHRONIC HEADACHES 8. TMJ SYNDROME x 9. NUMBNESS AND TINGLING SENSATION x 10. MUSCLE TWITCHING x 11. SKIN SENSITIVITIES x 12. DRY EYES AND MOUTH x 13. DIZZINESS x 14. ALLERGY SYMPTOMS x 15. MITRAL VALVE PROLAPSE 16. HEEL OR ARCH PAIN x 17. BRAIN FATIGUE xdid 18. PAINFUL PERIODS x 19. NON-CARDIAC CHEST PAINS 20. DEPRESSION x 21. PANIC ATTACKS x 22. IRRITABLE BLADDER x 23. MULTIPLE CHEMICAL SENSITIVITIES 24. JOINT HYPERMOBILITY 25. SUICIDAL 26. PERSONALITY CHANGES x 27. LIGHT HEADEDNESS 28. DISEQUILIBRIUM --Don't know what this is x 29. MUSCLE WEAKNESS x 30. INTOLERANC OF BRIGHT LIGHTS x 31. CHANGES IN TASTE, HEARING, OR SMELL 32. LOW FREQUENCY, SENSORINEURAL HEARING LOSS x 33. DECREASED PAINFUL SOUND THRESHOLD 34. RINGING IN THE EARS 35. EXAGGERATED INVOLUNTARY RAPID EYE MOVEMENT x 36. CHANGES IN VISUAL ACUITY 37. ALCOHOL INTOLERANCE --I don't drink x 38. ENHANCEMENT OF MEDICATION SIDE EFFECTS x 39. INTOLERANCE TO PREVIOUSLY TAKEN MEDICATIONS x 40. SEVERE NASAL & OTHER ALLERGIES (SINUS INFECTIONS) x 41. WEIGHT LOSS OR GAIN x 42. MUSCLE & JOINT ACHES x 43. NIGHT SWEATS x 44. HEART PALPITATIONS x 45. MUSCLE SPASMS 46. RAYNAUD'S LIKE SYMPTOMS --don't know what this is x 47. CARPAL TUNNEL SYNDROME x 48. HEARTBURN x 49. DIFFICULTY SWALLOWING ==Very Very Bad xhad 50. INTERSTITIAL CYSTITIS I just got back from the doctors, and he says I have fibromyalgia. I didn't know anything about it, but he says there is 18 sore points, and I have 16. It is great to know what I have now. Anyone else have this? How do you cope? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 , I don't have Fibromyalgia but I know of some who do. I read a book that is an excellent source of info for those who suffer from Fibro. Get the book: Fibromyalgia and Chronic Myofascial Pain Syndrome: A Surivor's Manual by: Devin Starlanyl and Ellen Copeland. I've read it and it's excellent as I said and it's simple to understand. I hope that this helps. ===== Kristy http://www.geocities.com/HotSprings/Falls/4659/kristyspage.html __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2001 Report Share Posted January 7, 2001 , Well golly, hon. I guess when it rains it pours?? *hugs* Sorry to hear about your newest diagnosis hon. Is the doctor doing anything to help you with the pain?? *hugs* Don & wrote: > I just got back from the doctors, and he says I have fibromyalgia. I didn't > know anything about it, but he says there is 18 sore points, and I have 16. > It is great to know what I have now. Anyone else have this? How do you > cope? > > > > The Being Sick Community > > Visual problems with colors? > Click the link below and select the modify link to your right. Then select the **Send Plain Text Email** option. This will stop you receiving emails with colored or enlarged fonts. > > > Members Lounge:- > Photo Album, memorial page, members profiles, birthdays, locations, medical resources, counselling via email and a whole bunch of free things. > http://www.elderwyn.com/members > > Message Archives and Digest Attachment Pictures:- > messages/ > > Chat:- > Scheduled Daily Chats at # on IRC DALnet. > /chat.htm > > Sharing our resources:- > Add a website URL you have found useful. > > > Personal Complaints or problems:- > Please contact a moderator either via email <-owneregroups> or visit:- > /Moderators.htm > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. > To modify your subscription settings please visit mygroups > > To subscribe or unsubscribe > subscribe/ > > ~~~~~~~~~~~~~~~ > > “Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go. " - Pueblo Prayer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 , *hugs* Please let me know how your appointment goes hon. I'll be thinking of you lots. *hugs* Don & wrote: > , > > Really all my doc is doing is putting me on Prozac and Flexiril. Nothing > for pain as of yet. > > I'll be on him on Monday. > > > > Re: New diagnosis > > , > Well golly, hon. I guess when it rains it pours?? *hugs* Sorry to hear > about your newest diagnosis hon. Is the doctor doing anything to help you > with the pain?? > > *hugs* > > > Don & wrote: > > > I just got back from the doctors, and he says I have fibromyalgia. I > didn't > > know anything about it, but he says there is 18 sore points, and I have > 16. > > It is great to know what I have now. Anyone else have this? How do you > > cope? > > > > > > > > The Being Sick Community > > > > Visual problems with colors? > > Click the link below and select the modify link to your right. Then select > the **Send Plain Text Email** option. This will stop you receiving emails > with colored or enlarged fonts. > > > > > > Members Lounge:- > > Photo Album, memorial page, members profiles, birthdays, locations, > medical resources, counselling via email and a whole bunch of free things. > > http://www.elderwyn.com/members > > > > Message Archives and Digest Attachment Pictures:- > > messages/ > > > > Chat:- > > Scheduled Daily Chats at # on IRC DALnet. > > /chat.htm > > > > Sharing our resources:- > > Add a website URL you have found useful. > > > > > > Personal Complaints or problems:- > > Please contact a moderator either via email <-owneregroups> > or visit:- > > /Moderators.htm > > > > Subscription Details:- > > 1) Individual email - means that every email sent to the list you receive. > > 2) Daily Digest - sends you 25 messages in one single email for you to > browse. This is an excellent option if you receive alot of email. > > 3) Web only/No mail - means that you can pop into eGroups at your > convenience and receive no email. > > To modify your subscription settings please visit > mygroups > > > > To subscribe or unsubscribe > > subscribe/ > > > > ~~~~~~~~~~~~~~~ > > > > “Hold on to what is good, even if it's a handful of earth. Hold on to what > you believe, even if it's a tree that stands by itself. Hold on to what you > must do even, if it's a long way from here. Hold on to your life, even if > it's easier to let go. " - Pueblo Prayer > > The Being Sick Community > > Visual problems with colors? > Click the link below and select the modify link to your right. Then select > the **Send Plain Text Email** option. This will stop you receiving emails > with colored or enlarged fonts. > > > Members Lounge:- > Photo Album, memorial page, members profiles, birthdays, locations, medical > resources, counselling via email and a whole bunch of free things. > http://www.elderwyn.com/members > > Message Archives and Digest Attachment Pictures:- > messages/ > > Chat:- > Scheduled Daily Chats at # on IRC DALnet. > /chat.htm > > Sharing our resources:- > Add a website URL you have found useful. > > > Personal Complaints or problems:- > Please contact a moderator either via email <-owneregroups> or > visit:- > /Moderators.htm > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to > browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your > convenience and receive no email. > To modify your subscription settings please visit > mygroups > > To subscribe or unsubscribe > subscribe/ > > ~~~~~~~~~~~~~~~ > > “Hold on to what is good, even if it's a handful of earth. Hold on to what > you believe, even if it's a tree that stands by itself. Hold on to what you > must do even, if it's a long way from here. Hold on to your life, even if > it's easier to let go. " - Pueblo Prayer > > The Being Sick Community > > Visual problems with colors? > Click the link below and select the modify link to your right. Then select the **Send Plain Text Email** option. This will stop you receiving emails with colored or enlarged fonts. > > > Members Lounge:- > Photo Album, memorial page, members profiles, birthdays, locations, medical resources, counselling via email and a whole bunch of free things. > http://www.elderwyn.com/members > > Message Archives and Digest Attachment Pictures:- > messages/ > > Chat:- > Scheduled Daily Chats at # on IRC DALnet. > /chat.htm > > Sharing our resources:- > Add a website URL you have found useful. > > > Personal Complaints or problems:- > Please contact a moderator either via email <-owneregroups> or visit:- > /Moderators.htm > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. > To modify your subscription settings please visit mygroups > > To subscribe or unsubscribe > subscribe/ > > ~~~~~~~~~~~~~~~ > > “Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go. " - Pueblo Prayer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2002 Report Share Posted April 27, 2002 In a message dated 4/26/02 10:00:47 PM Central Daylight Time, writes: > . The school administrator mentioned something about having someone work > with him during class time. I'm not sure. needs the class time to > work on his social skills, and one-on-one work would not be effective in a > noisy classroom, since he is easily overwhelmed. The trouble is, I'm not > sure what would be the most effective treatment given his young age and > symptoms, so I don't feel confident about demanding a specific type of > service. > > We would appreciate it if some of you who were in a similar situation could > share what school programs worked for your child, and also possibly what to > avoid. > > Mike Petricig > Mike, Would the school look at the one on one working on social skills with your son during class time? The aide would be responsible for assisting your son in interacting with the other kids, helping him use some sign lang or picture communication as a bridge to verbal lang., follow through on what the speech therapist and OT are doing with him. In sum, the person would help your son engage in the routine and make it meaningful to him. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2002 Report Share Posted April 27, 2002 Hello, So glad you wrote! This group will give you lots of good advice but just wanted to put my two cents in if I could. Sounds like you all are on the right track and it is good that you had him evaluated this early. My son was evaluated at about the same age and was diagnosed with the autism then. I think For , too much school time was overwhelming and so I pulled out and they let me bring him in an hour or so 4 days a week to get therapies and have alittle class time with the kids (who he really does not interact with unless I bring him up to them and encourage it and he still ignores them) but I really like to be his one on one in a way cause I can see how things are going. Sounds like an autism specialist would be a great idea to observe him! Wish we could have had this! Also 2 hrs a day seems like a good thing and the therapies (which also seem to work better without all the kids around) I know the group will give you some more things to ask for but I would also say whatever you feel works for him at home to communicate, signs, pecs, pictures, they need to carry this through at school to the letter as you wish. God Bless you all and stay with us! Dawn, ( 5 yrs.) (also, I hope can get all the services he needs!!! For OT is so important, I wanted all the OT I could get for him) New Diagnosis A few weeks ago I wrote that we were interested in getting our son (3.5 years old) evaluated because of some autistic behaviors. Last week we took him to UC Irvine to see Dr. Lott, a neurologist on the NDSS Board. His report states that " ph does have many symptoms on the autistic spectrum including sensory integration disorder, gaze avoidance, avoidance of social contact with children and some compulsive behaviors. " He suggests that " ph be enrolled in a pre-school program for children with autistic features. " This week we had an IEP meeting at his special ed preschool, and we requested additional services. Currently he attends class 2 hours per day, 5 days a week. He is pulled out for 1/2 hour of one-on-one OT once per week, and he receives 2 hours of PT per week outside of class. We would like to continue with all of these, but more is needed since he has made no progress in speech since he began school 6 months ago. He does not speak at school, although he babbles at home and occasionally mimics a word from his videos or us. The autism specialist is going to observe him in class for a few days and make a recommendation, then we will have another IEP meeting. The school administrator mentioned something about having someone work with him during class time. I'm not sure. needs the class time to work on his social skills, and one-on-one work would not be effective in a noisy classroom, since he is easily overwhelmed. The trouble is, I'm not sure what would be the most effective treatment given his young age and symptoms, so I don't feel confident about demanding a specific type of service. We would appreciate it if some of you who were in a similar situation could share what school programs worked for your child, and also possibly what to avoid. Mike Petricig Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2006 Report Share Posted January 27, 2006 Hi there! My name is Kim and would just love to make a comment. I totally understand and have been where you are!! First, I'd like to mention when you said: The doctor was far more concerned with discussing his transition into the school system than what exactly HFA is I truly hope the doctor didn't seem to be lacking in info. The only reason I say that is, when my son was two.. he was the same way.. temper tantrums, etc. I had already started doing online research about the "signs" and was reading about how when you do try to approach dr's . unfortunately, at the age of two.. AND the child is a boy, you will get.. "Mom, let's wait and see", blah, blah, blah.. Well, I used to wish I could just have a injection to give him to calm him down.. he used to be soooooooooooooooo hyped up, (just kidding.. lol.. or am I??) But, anyway, usually we hear.. when there are problem, we should go to our teachers, doctors and clergymen.. well, being that this was a medical thing.. I went to the docs.. and I knew they didn't want to just dx a child so quick without more info.. input, etc. I used to bring others with me to vouch for me.. so they didn’t think I was some overreacting mom.. I remember one time I had to go to an appt. for my other son.. (psychologist) and she was like, Ma'am.. would you like to bring your son in for evaluation.. lol Well, I wasn't gonna sit and wait around for my child to go to school and THEN let the "issues" arise.. (you know that’s when it all comes out) So, I called Babie's Can't Wait on my own, and they came out, did their thing, etc. etc. I assigned a casemanager (I forget the term.. lol) and then onto the long waiting list for an appt. with the Marcus Inst. (the old building) used to be called the Marcus Center..with a developmental pediatrician. In the meantime, one one one.. OT/Speech therapy.. in L'ville pediatric therapy. IT was grueling.. but before we knew it, we got our appt. at the Marcus Inst., for the long sched. appt. After her eval, testing, etc. The dr then asked me.. what did I think was the issue.. or something on those lines.. and I said.. I mentioned that I thought he was a severe case of ADHD ever! She then went on to explain, well, you don't hear of someone with ADHD not communicating, (something similar to that) and then she went onto the DX. It freaked me out, I thought this woman was a psychic.. HOW COULD SHE KNOW MY CHILD she explained him to a "T" and while observing him.. he never said a word during the whole three hours. just playing with the blocks, and STACKING them ever so neatly. While she did explain PDD somewhat.. she said that early intervention with SCHOOLING would be the best.. I did overkill on my own by way of researching all I could find out about my son, and even burned myself out, but I needed to know all I needed to know and help him anyway possible. I must admit, that IT WAS HARD to see him go to Sp. Needs PreK in public school, but the local school had an autism program there, I met with them, etc. and my son started school.I have never been more pleased with the success of him starting school at three. I was scared to pieces.. but I DO KNOW that it helps A LOT. My son just entered middle school and is now 12. He is mainstreamed with resources.. great IEP. Middle school now is more of a challenge, so I am fighting once again as his advocate so he doesn't "slip" we fought so hard to get him where he is today. WOW, I never comment on here, but just felt it to write.. sorry it is long. Your child will be okay. Finding out early is the best thing for your child. EARLY INTERVENTION is the way to go, and you have already begun your journey. Best wishes to you, as you will learn even more about your child in the upcoming days, weeks, months, etc. email anytime.. I may give another lengthy email.. if I am not having a stressed day.. with the two personalities of my awesome sons.. lol Sincerely, Kim Mom of 12 year old HFA and 17 1/2 year old NLD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 Thanks soooo much for the email. A lot of people offered to talk with me on the phone, but I'm just trying to find time to breathe right now. I have Tyler who is almost three and who just turned one, so I'm kind of busy. Your experience is encouraging. My therapists are now argueing over the diagnosis; two of them don't believe it is correct (after doing the research I am sure that it is), while the other one diagrees. My sons special instruction therapist keeps telling me that she has kids that get a diagnosis and then a year later don't have one, but I'm concerned about buying into that and "getting my hopes up" for lack of a better term. I hope everything goes as well for me as it has gone for you. Thanks again. SaraRespite <Respite_Hiatus@...> wrote: Hi there! My name is Kim and would just love to make a comment. I totally understand and have been where you are!! First, I'd like to mention when you said: The doctor was far more concerned with discussing his transition into the school system than what exactly HFA is I truly hope the doctor didn't seem to be lacking in info. The only reason I say that is, when my son was two.. he was the same way.. temper tantrums, etc. I had already started doing online research about the "signs" and was reading about how when you do try to approach dr's . unfortunately, at the age of two.. AND the child is a boy, you will get.. "Mom, let's wait and see", blah, blah, blah.. Well, I used to wish I could just have a injection to give him to calm him down.. he used to be soooooooooooooooo hyped up, (just kidding.. lol.. or am I??) But, anyway, usually we hear.. when there are problem, we should go to our teachers, doctors and clergymen.. well, being that this was a medical thing.. I went to the docs.. and I knew they didn't want to just dx a child so quick without more info.. input, etc. I used to bring others with me to vouch for me.. so they didn’t think I was some overreacting mom.. I remember one time I had to go to an appt. for my other son.. (psychologist) and she was like, Ma'am.. would you like to bring your son in for evaluation.. lol Well, I wasn't gonna sit and wait around for my child to go to school and THEN let the "issues" arise.. (you know that’s when it all comes out) So, I called Babie's Can't Wait on my own, and they came out, did their thing, etc. etc. I assigned a casemanager (I forget the term.. lol) and then onto the long waiting list for an appt. with the Marcus Inst. (the old building) used to be called the Marcus Center..with a developmental pediatrician. In the meantime, one one one.. OT/Speech therapy.. in L'ville pediatric therapy. IT was grueling.. but before we knew it, we got our appt. at the Marcus Inst., for the long sched. appt. After her eval, testing, etc. The dr then asked me.. what did I think was the issue.. or something on those lines.. and I said.. I mentioned that I thought he was a severe case of ADHD ever! She then went on to explain, well, you don't hear of someone with ADHD not communicating, (something similar to that) and then she went onto the DX. It freaked me out, I thought this woman was a psychic.. HOW COULD SHE KNOW MY CHILD she explained him to a "T" and while observing him.. he never said a word during the whole three hours. just playing with the blocks, and STACKING them ever so neatly. While she did explain PDD somewhat.. she said that early intervention with SCHOOLING would be the best.. I did overkill on my own by way of researching all I could find out about my son, and even burned myself out, but I needed to know all I needed to know and help him anyway possible. I must admit, that IT WAS HARD to see him go to Sp. Needs PreK in public school, but the local school had an autism program there, I met with them, etc. and my son started school.I have never been more pleased with the success of him starting school at three. I was scared to pieces.. but I DO KNOW that it helps A LOT. My son just entered middle school and is now 12. He is mainstreamed with resources.. great IEP. Middle school now is more of a challenge, so I am fighting once again as his advocate so he doesn't "slip" we fought so hard to get him where he is today. WOW, I never comment on here, but just felt it to write.. sorry it is long. Your child will be okay. Finding out early is the best thing for your child. EARLY INTERVENTION is the way to go, and you have already begun your journey. Best wishes to you, as you will learn even more about your child in the upcoming days, weeks, months, etc. email anytime.. I may give another lengthy email.. if I am not having a stressed day.. with the two personalities of my awesome sons.. lol Sincerely, Kim Mom of 12 year old HFA and 17 1/2 year old NLD Sara McElrea Bare Autos. Looking for a sweet ride? Get pricing, reviews, more on new and used cars. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2006 Report Share Posted January 29, 2006 The diagnosis is important for your son to get services. It must be very difficult as a parent to find out this information and you mentioned that your therapists are arguing over the accuracy of the diagnosis. Something important to keep in mind is that no matter what his diagnosis is, you have to treat his deficits. If he has a speech delay, you still must treat it. If he is having behavioral problems, you still have to have a plan in place to help him with this. The diagnosis of autism or not, does not matter. If there are problems present, you have to help your son with those issues. Shauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 Sara and Andy, You are not alone. Many parents feel overwhelmed at the time of the initial diagnosis. There is so much information out there and it is hard to tell what is what. Please feel free to contact me off the list and I would be happy to facilitate your understanding of the assessments your son experienced as well as help you to understand what services your family may want or need. Good luck. Dana Dana M. Trahant, Ph.D., BCBA Director of Home Consultation Senior Educational Consultant Senior Behavior Analyst Southern Behavioral Group, Inc. 1950 Spectrum Circle Suite 400 Marietta, GA 30067 tel: 678.921.2808 fax: 678.921.2822 Email: dtrahantsouthernbehavioral Website: www.southernbehavioral.com ***This e-mail or the documents accompanying this e-mail contain information that may be confidential and/or privileged. It may also be prohibited from disclosure under applicable law. The information is intended to be for the use of the individual or entity named on this transmission. If you are not the intended recipient, be aware that any disclosure, copying, distribution or use of the contents of this information is without authorization and is prohibited. If you have received this message in error, please notify the sender and delete all copies of the message and any attachments from your system immediately.*** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 Sara and Andy, You are not alone. Many parents feel overwhelmed at the time of the initial diagnosis. There is so much information out there and it is hard to tell what is what. Please feel free to contact me off the list and I would be happy to facilitate your understanding of the assessments your son experienced as well as help you to understand what services your family may want or need. Good luck. Dana Dana M. Trahant, Ph.D., BCBA Director of Home Consultation Senior Educational Consultant Senior Behavior Analyst Southern Behavioral Group, Inc. 1950 Spectrum Circle Suite 400 Marietta, GA 30067 tel: 678.921.2808 fax: 678.921.2822 Email: dtrahantsouthernbehavioral Website: www.southernbehavioral.com ***This e-mail or the documents accompanying this e-mail contain information that may be confidential and/or privileged. It may also be prohibited from disclosure under applicable law. The information is intended to be for the use of the individual or entity named on this transmission. If you are not the intended recipient, be aware that any disclosure, copying, distribution or use of the contents of this information is without authorization and is prohibited. If you have received this message in error, please notify the sender and delete all copies of the message and any attachments from your system immediately.*** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 > > Yesterday, I took my son to a university group for a second opinion. They recommend CBT using a manual called > the Coping Cat. Bonnie- My nephew used the coping cat program and had amazing success. he had (has) generalized anxiety disorder and ADD and used to be afraid to go to the bathroom alone or be in a room without another person. After using Coping Cat, he's able to do everything he wasn't able to do before. If I remember correctly, my sister started seeing a change within weeks. Since my daughter has anxiety, I asked Ben what he thought helped him the most and he said breathing exercises and the coping cat therapy (he didn't call it that). Good luck to you and your son! Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 Hi Bonnie, yes, definitely stay a member! And do let us know how all this goes, the CBT, the Coping Cat (haven't heard of that, I'll have to google it!), plus anything else that they do. Whew, bet your son and you and dad were worn out after all that paperwork and talking! Did you get to be present any when they were with your son, I'm just wondering what all they did/asked; e.g., a bit of socializing or play, some type questions with maybe choices for answers...? I remember when was eval'd for autism, I got to watch thru a 2-way mirror for a few minutes, but other than that they just told me what all they asked/did and their thoughts on it all. Oh - and with your son's separation anxiety, maybe you did get to be present?? > > Yesterday, I took my son to a university group for a second opinion. I > filled out an hour and a half's worth of paperwork, had his teacher do > some also, and the interviews lasted hours. My son was seen by 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2006 Report Share Posted June 9, 2006 That is interesting Bonnie. Why do you think the first psychologist you took him to see thought he had OCD when these other ones don't seem to find that to be the case? I hope these people are correct - it should be much easier to get under control. I assume he isn't having the intrusive thoughts? That is great news if that is the case. OCD can mimic separation anxiety, so I can see where you might have been confused, but the inability to rid himself of the unwanted intrusive thoughts and the need to perform rituals (either mental or physical)to alleviate the anxiety produced by the obsessions would be OCD. If that wasn't the case for your son, that is great. Good luck! > > Yesterday, I took my son to a university group for a second opinion. I > filled out an hour and a half's worth of paperwork, had his teacher do > some also, and the interviews lasted hours. My son was seen by 3 > psychiatrists and 2 psychologists for over an hour. After they > interviewed my husband and I and then my son, they met with an > additional 2 psychiatric fellows. They told us that they did not > believe that my son has OCD. They think that he has Separation > Anxiety Disorder and possibly Generalized Anxiety Disorder with some > obsessive features. Because he is doing well off meds, they don't > want to put him on anything. They recommend CBT using a manual called > the Coping Cat. > > I feel pretty good about it. I thought that his OCD diagnosis suited > his behavior better than others I have heard, but I was not absolutely > sure. My husband had something similar to what my son has for his 1st > 2 years of school - and then kind of grew out of it? (although he has > a panic disorder as an adult). However, my husband's situation was > not as severe from what I hear. > > In my mind, the jury is still out, but I am encouraged. I will take > each day as it comes and continue with what we are doing for him. I > would also like to remain a member here if that is OK. > > Bonnie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 I was not present for much of my son's evaluation. He was in the next room and did OK. He has good and bad days when he is more " attached " than others. He played with them, drew pictures, and was interviewed in depth about his worries and how he feels when he is afraid. They said that he was very grown-up like and that it was like talking to a little man. I think that because all of this emotional stuff did interfere with his socialization over the past couple of years, I may put him in a social skills group or something to help him get up to speed with that. It can't hurt anyway. Thanks, Bonnie > > > > Yesterday, I took my son to a university group for a second > opinion. I > > filled out an hour and a half's worth of paperwork, had his teacher > do > > some also, and the interviews lasted hours. My son was seen by 3 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 My son had a repetitive speech pattern and was agoraphobic. The speeach pattern and the avoidance can be compulsions. The avoidance (when it came to separation or being in large crowded or loud places) and the speech pattern went away within a couple of months of it's beginning. At this recent evaluation, he was evaluated as well for Tourettes. They felt that he has transient tics (none in the last few mos), but not anything specific. I think that my son is also more expressive at 7 than at 5 and is more insightful, hence we can understand his feelings a little more. Bonnie > > > > Yesterday, I took my son to a university group for a second > opinion. I > > filled out an hour and a half's worth of paperwork, had his teacher > do > > some also, and the interviews lasted hours. My son was seen by 3 > > psychiatrists and 2 psychologists for over an hour. After they > > interviewed my husband and I and then my son, they met with an > > additional 2 psychiatric fellows. They told us that they did not > > believe that my son has OCD. They think that he has Separation > > Anxiety Disorder and possibly Generalized Anxiety Disorder with some > > obsessive features. Because he is doing well off meds, they don't > > want to put him on anything. They recommend CBT using a manual > called > > the Coping Cat. > > > > I feel pretty good about it. I thought that his OCD diagnosis > suited > > his behavior better than others I have heard, but I was not > absolutely > > sure. My husband had something similar to what my son has for his > 1st > > 2 years of school - and then kind of grew out of it? (although he > has > > a panic disorder as an adult). However, my husband's situation was > > not as severe from what I hear. > > > > In my mind, the jury is still out, but I am encouraged. I will take > > each day as it comes and continue with what we are doing for him. I > > would also like to remain a member here if that is OK. > > > > Bonnie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 In a message dated 07/11/2006 12:59:41 GMT Standard Time, dolapomhd@... writes: Everyone please help and advise, i am totally ignorantof this process.Many thanksDolapo Hi Dolapo, I would strongly recommend, like some one else said, that you find other parents near you who have gone through the statementing process. I met one person from this list who invited me to her home, showed us her ABA program, told us about statementing, met with my husband, etc. There is an ABA-UK group where you can seek help and further information on getting funding from your local LEA, there may be others there who live in your borrough. I also had two other friends who advised and helped throughout the process - I met them at a local playgroup for kids with disabilities. Most parents are more than willing to help others with their own experience as we all know too well how adversarial the system is. I would really encourage you to follow Margaret's advice, get the SEN code of practice and the book that she recommended. It's not the most stimulating bed-time reading but the decisions that you make right now are very important. All the best and welcome to the list, DarlaDS 2 years 5 months old, HF ASD, GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 That sounds like a good start, do not worry to much about tests right now, they can sometimes just confuse you further with no real benefits - looking back on it now if I could chose I would save all that ££££ we spent on tests and use it on exactly those things you mention.. (not sure about glyconutrients, as haven't considered them). TransferFactor sounds definitely worth trying, in terms of immune support/modulation you might want to consider LDN too - unfortunately that one is rx only, which would mean private doc and probably tests have you tried/considered mb12 at all? some kids respond very well to it, it is not that expensive if you try nasal form from the Italian pharmacy: Farmacia Legnani - lab@... (cost us about £12 inc shipping for one-two-month supply) Natasa > > Hi all, > > My son, got his formal diagnosis of autism on Friday.I have > been a member on this list for a couple of months now and have > learned a lot.I need advice and guidance now!. > > Firstly can i ask listmates what the next step is? I have used > culturelle and GSE to address gut bugs recently with some success but > the constipation is still there. I am planning to continue with > enzymes and probiotics for now,and then add glyconutrients and > transfer factor some time later. is this a reasonable first step? I > am very short on funds and cannot afford any tests for now? > > Also,i wonder if i can assess any therapy funded by the government in > addition to pre-school. is 3 and a half years old and recently > started half-day nursery with one-to-one support.He is non-verbal and > i wondered if i can request for additional hours for ABA at home. > Does anybody have experience with this? > > Also i have been reseraching on the internet and have come across > special CDs aimed at teaching kids on the spectrum.I wonder if there > are any listmaes who want to sell their old CDs for a token?I am > interested in these, as i want to see if my son will respond well to > them before investing heavily in them. > > By the way,i live in the UK,Weston-Super-Mare. All advice,suggestions > are welcome. > > Many thanks > > Dolapo > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Dear Dolapo (is that a screen name ?- it's not a name I've ever come across before), If you can't afford tests or to go to a practitioner and you know constipation is a problem, I would suggest the first thing to do is to try adjusting your child's diet, aiming either to become gluten, dairy, soya (and maize?) free or going for the Specific Carbohydrate diet. It can take some time to achieve this. If GP accepts constipation is a problem, then you can get help on the NHS to some degree. Find out if there is a paediatric constipation service in your area and ask to be referred. You may get prescriptions for paediatric movicol (a stool softener, which you can't buy over the counter)and senna. Lactulose can be prescribed or bought cheaply, but isn't very effective. Another tool in the kit in fighting constipation is oxypowder, which quite a few people on this list are using. This is available from Mandimart http://www.mandimart.com/ or other suppliers. There is a lot of information at http://www.treatingautism.com/ which will give an idea of some of the things people are trying. Don't try everything at once, if you can manage it go one step at a time. As for education, it's an absolute minefield. I would suggest contacting any local parents' groups concerned with disability/special educational needs to see whether there is one in your area that has good local knowledge about the educational system locally. It is extremely unlikely that anyone the LEA could put into school to support your child would know anything about ABA, I'm afraid. Be aware you can initiate the Statementing process, butin any event, read up on it and get advice before you start. You can order the 2001 SEN Code of Practice and the SEN Toolkit from 0845 6022260 free of charge. I also recommend and Ruebain's book Taking Action!: Your Child's Right to Special Education ISBN: 1841900109 , but I'm afraid it's out of print. The RNIB may still have a copy or two left if you're lucky. I've probably given you far too much information - and I suggest your main help may be finding a local group or a parent who knows the system locally. Margaret A lot of us on this list have children who tend to constipation. > > > > Hi all, > > > > My son, got his formal diagnosis of autism on Friday.I have > > been a member on this list for a couple of months now and have > > learned a lot.I need advice and guidance now!. > > > > Firstly can i ask listmates what the next step is? I have used > > culturelle and GSE to address gut bugs recently with some success but > > the constipation is still there. I am planning to continue with > > enzymes and probiotics for now,and then add glyconutrients and > > transfer factor some time later. is this a reasonable first step? I > > am very short on funds and cannot afford any tests for now? > > > > Also,i wonder if i can assess any therapy funded by the government in > > addition to pre-school. is 3 and a half years old and recently > > started half-day nursery with one-to-one support.He is non-verbal and > > i wondered if i can request for additional hours for ABA at home. > > Does anybody have experience with this? > > > > Also i have been reseraching on the internet and have come across > > special CDs aimed at teaching kids on the spectrum.I wonder if there > > are any listmaes who want to sell their old CDs for a token?I am > > interested in these, as i want to see if my son will respond well to > > them before investing heavily in them. > > > > By the way,i live in the UK,Weston-Super-Mare. All advice,suggestions > > are welcome. > > > > Many thanks > > > > Dolapo > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Thanks Natasa for your response. Is the MB12 nasal spray Rx too? Also apart from the delivery costs, how much does the supply actually cost? Sorry to bombard you like this but i just need the info. I appreciate your response. Dolapo --- natasa778 <neno@...> wrote: > That sounds like a good start, do not worry to much > about tests right > now, they can sometimes just confuse you further > with no real benefits - > looking back on it now if I could chose I would save > all that > ££££ we spent on tests and use it on exactly > those things you > mention.. (not sure about glyconutrients, as haven't > considered them). > > TransferFactor sounds definitely worth trying, in > terms of immune > support/modulation you might want to consider LDN > too - unfortunately > that one is rx only, which would mean private doc > and probably tests > > have you tried/considered mb12 at all? some kids > respond very well to > it, it is not that expensive if you try nasal form > from the Italian > pharmacy: > Farmacia Legnani - lab@... > (cost us about £12 inc shipping for one-two-month > supply) > > Natasa > > > > > > Hi all, > > > > My son, got his formal diagnosis of autism > on Friday.I have > > been a member on this list for a couple of months > now and have > > learned a lot.I need advice and guidance now!. > > > > Firstly can i ask listmates what the next step is? > I have used > > culturelle and GSE to address gut bugs recently > with some success but > > the constipation is still there. I am planning to > continue with > > enzymes and probiotics for now,and then add > glyconutrients and > > transfer factor some time later. is this a > reasonable first step? I > > am very short on funds and cannot afford any tests > for now? > > > > Also,i wonder if i can assess any therapy funded > by the government in > > addition to pre-school. is 3 and a half > years old and recently > > started half-day nursery with one-to-one > support.He is non-verbal and > > i wondered if i can request for additional hours > for ABA at home. > > Does anybody have experience with this? > > > > Also i have been reseraching on the internet and > have come across > > special CDs aimed at teaching kids on the > spectrum.I wonder if there > > are any listmaes who want to sell their old CDs > for a token?I am > > interested in these, as i want to see if my son > will respond well to > > them before investing heavily in them. > > > > By the way,i live in the UK,Weston-Super-Mare. All > advice,suggestions > > are welcome. > > > > Many thanks > > > > Dolapo > > > > > > ___________________________________________________________ All New – Tired of Vi@gr@! come-ons? Let our SpamGuard protect you. http://uk.docs./nowyoucan.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Hi Margaret, Dolapo is my name not a screen name. I am from Nigeria and it's an indigenous name! I usually refer to myself at work as " Olu " as that's easier on the tongue! Thanks for all the information. My paed does agree with me that constipation is a major problem. (bless him) struggled troughout one of our one-to-one assessment sessions trying to pooh! We have been referred to a gastroenterologist (not sure of the spelling!) and have an appointment for December. Hope we get some good news/treatment from that source. By the way, we are dairy free now but we still use Soya! Should i eliminate that as well. I am hoping to go gluten free but to be honest, i'm scared of the prospect. I tried it for one week, apart from the expense my son absolutely refused the bread which he loves dearly. You are right about the LEA, the aide they got for my son does not know anything about PECS, ABA etc. She is just about to be trained jointly with us on PECS. Can you shed more light on the statementing process as my paed hinted me that the SEN specialist for Pre-school will attend our next review meeting in December. Can i specify things like ABA/Verbal Behavior on the statememt. Everyone please help and advise, i am totally ignorant of this process. Many thanks Dolapo --- mcollins2001uk <m.collins9@...> wrote: > Dear Dolapo (is that a screen name ?- it's not a > name I've ever come > across before), > If you can't afford tests or to go to a practitioner > and you know > constipation is a problem, I would suggest the first > thing to do is > to try adjusting your child's diet, aiming either to > become gluten, > dairy, soya (and maize?) free or going for the > Specific Carbohydrate > diet. It can take some time to achieve this. > > If GP accepts constipation is a problem, then you > can get help on the > NHS to some degree. Find out if there is a > paediatric constipation > service in your area and ask to be referred. You may > get > prescriptions for paediatric movicol (a stool > softener, which you > can't buy over the counter)and senna. Lactulose can > be prescribed or > bought cheaply, but isn't very effective. > > Another tool in the kit in fighting constipation is > oxypowder, which > quite a few people on this list are using. This is > available from > Mandimart http://www.mandimart.com/ or other > suppliers. > > There is a lot of information at > http://www.treatingautism.com/ which > will give an idea of some of the things people are > trying. > > Don't try everything at once, if you can manage it > go one step at a > time. > > As for education, it's an absolute minefield. I > would suggest > contacting any local parents' groups concerned with > disability/special educational needs to see whether > there is one in > your area that has good local knowledge about the > educational system > locally. It is extremely unlikely that anyone the > LEA could put into > school to support your child would know anything > about ABA, I'm > afraid. Be aware you can initiate the Statementing > process, butin any > event, read up on it and get advice before you > start. You can order > the 2001 SEN Code of Practice and the SEN Toolkit > from 0845 6022260 > free of charge. I also recommend and > Ruebain's book > Taking Action!: Your Child's Right to Special > Education ISBN: > 1841900109 , but I'm afraid it's out of print. The > RNIB may still > have a copy or two left if you're lucky. I've > probably given you far > too much information - and I suggest your main help > may be finding a > local group or a parent who knows the system > locally. > > Margaret > > > A lot of us on this list have children who tend to > constipation. > > > > > > > Hi all, > > > > > > My son, got his formal diagnosis of autism > on Friday.I have > > > been a member on this list for a couple of > months now and have > > > learned a lot.I need advice and guidance now!. > > > > > > Firstly can i ask listmates what the next step > is? I have used > > > culturelle and GSE to address gut bugs recently > with some success > but > > > the constipation is still there. I am planning > to continue with > > > enzymes and probiotics for now,and then add > glyconutrients and > > > transfer factor some time later. is this a > reasonable first step? > I > > > am very short on funds and cannot afford any > tests for now? > > > > > > Also,i wonder if i can assess any therapy funded > by the > government in > > > addition to pre-school. is 3 and a half > years old and > recently > > > started half-day nursery with one-to-one > support.He is non-verbal > and > > > i wondered if i can request for additional hours > for ABA at home. > > > Does anybody have experience with this? > > > > > > Also i have been reseraching on the internet and > have come across > > > special CDs aimed at teaching kids on the > spectrum.I wonder if > there > > > are any listmaes who want to sell their old CDs > for a token?I am > > > interested in these, as i want to see if my son > will respond well > to > > > them before investing heavily in them. > > > > > > By the way,i live in the UK,Weston-Super-Mare. > All > advice,suggestions > > > are welcome. > > > > > > Many thanks > > > > > > Dolapo > > > > > > > > > ___________________________________________________________ Now you can scan emails quickly with a reading pane. Get the new . http://uk.docs./nowyoucan.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Dear Dolapo, Statementing is a very complex process, full of pitfalls for parents. Most LEAs won't put in ABA/VB unless you are already running a programme (and have independent reports to show your child needs it and it's working) and are prepared to take them to Tribunal over it. I think you need to try all available local sources of information and also to contact IPSEA for advice http://www.ipsea.org.uk/. Also, get in contact with Peach http://www.peach.org.uk/Home/ . You could try the local Parent Partnership Service (your LEA will have contact details) to ask what's available locally by way of educational services for a young child with autism, but I warn you, many (most?) PPS are in reality part of the LEA, although they are supposed to be at arm's length. There is no short or easy answer to getting things right, I am afraid. The LEA will walk all over you unless you get good quality advice from someone who knows about autism and Education Law. This book gives a good idea of what the system is like: Surviving the Special Educational Needs System How to be a `Velvet Bulldozer' http://www.jkp.com/catalogue/book.php/isbn/9781843102625 I'm sorry I don't have any more time right now to post on this topic, just be aware it is very difficult, but that your child does have legal rights that are enforceable. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Hi Dolapo Definitely start the statementing process. We got told to wait until Charlie went to school so that early years didn't have to provide any help. It took me a year to get a statement, just in time for school and the LEA fought me every step of the way. First of all they said there wasn't enough evidence to even assess him, inspite if diagnosis etc. So I had to go to the papers and then he was assessed. Then I had to threaten them with NAS. It is awful to have to do this at a time when your grieving is at it's worst - it doesn't stay that bad forever though I thought the constant pain would never stop! Unfortunately the more kids there are with difficulties the less help there is and LEA's are trying to preserve their budgets and do nothing. Also if you get a statement you have much more control over which school he goes to and help will be there straight away as opposed to letting him suffer first. When Charlie was diagnosed I was told I would be fobbed off and to start the statement myself - very good bit of advice. Having said all the you might have an LEA which employs humans as opposed to shrivelled up old witches like ours! Good luck Peta > > > > > > Hi all, > > > > > > My son, got his formal diagnosis of autism on Friday.I have > > > been a member on this list for a couple of months now and have > > > learned a lot.I need advice and guidance now!. > > > > > > Firstly can i ask listmates what the next step is? I have used > > > culturelle and GSE to address gut bugs recently with some success > but > > > the constipation is still there. I am planning to continue with > > > enzymes and probiotics for now,and then add glyconutrients and > > > transfer factor some time later. is this a reasonable first step? > I > > > am very short on funds and cannot afford any tests for now? > > > > > > Also,i wonder if i can assess any therapy funded by the > government in > > > addition to pre-school. is 3 and a half years old and > recently > > > started half-day nursery with one-to-one support.He is non- verbal > and > > > i wondered if i can request for additional hours for ABA at home. > > > Does anybody have experience with this? > > > > > > Also i have been reseraching on the internet and have come across > > > special CDs aimed at teaching kids on the spectrum.I wonder if > there > > > are any listmaes who want to sell their old CDs for a token?I am > > > interested in these, as i want to see if my son will respond well > to > > > them before investing heavily in them. > > > > > > By the way,i live in the UK,Weston-Super-Mare. All > advice,suggestions > > > are welcome. > > > > > > Many thanks > > > > > > Dolapo > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.