LisaBob
10-31-2006, 03:38 PM
I have 11 year old boy/girl twins who were 8 weeks early. My daughter has Tourette's syndrome and OCD and my son has Asperger's Syndrom and OCD.
My daughter has been treated for her conditions for some time. My son was more recently diagnosed with Asperger's but just recently seems to have OCD - within a few weeks/months time.
He thinks "he" is dirty and cannot touch himself anywhere. He washes all the time and takes at least one bath a day. He changes his clothes frequently. His hands and face are raw and cracked from him rubbing off something "disgusting." He uses tissue to pick things up. He doesn't like anyone he doesn't know touching him and he doesn't like touching other people's stuff. But most of his behavior seems to be more about finding himself "disgusting" (in his words). Spiders freak him out, artificial plants too. He can play with his pets and clean a litter box though.
I don't understand and am so worried! Are there any good books you can recommend? Any advice at all???? :confused:
My sincere thanks,
Lisa
My daughter has been treated for her conditions for some time. My son was more recently diagnosed with Asperger's but just recently seems to have OCD - within a few weeks/months time.
He thinks "he" is dirty and cannot touch himself anywhere. He washes all the time and takes at least one bath a day. He changes his clothes frequently. His hands and face are raw and cracked from him rubbing off something "disgusting." He uses tissue to pick things up. He doesn't like anyone he doesn't know touching him and he doesn't like touching other people's stuff. But most of his behavior seems to be more about finding himself "disgusting" (in his words). Spiders freak him out, artificial plants too. He can play with his pets and clean a litter box though.
I don't understand and am so worried! Are there any good books you can recommend? Any advice at all???? :confused:
My sincere thanks,
Lisa
Sponsor
Linda in MI
10-31-2006, 09:45 PM
Lisa,
My son's OCD seemed to have started rather suddenly, too. He is 9-years-old and was diagnosed a year and a half ago. He used to take two showers a day, wash his hands up to 100 times a day, wouldn't touch certain things, etc., etc., etc. He was on Prozac for a year, but began taking Lexapro instead this past June. He also sees his therapist every week. He still has some OCD issues, but is much improved now. I understand how you must feel - it was extremely frustrating, scary, and sad at first. (Were your daughter's OCD symptoms different from your son's?) I bought several books about childhood OCD, but didn't find them especially helpful. I did find that having "parent sessions" with his therapist always made me feel more hopeful. Know that you are not alone. If you think of any specific questions, just ask. Things will get better!
Linda
P.S. How does your son do at school? That is still a problem for my son, with things getting "contaminated" and germs spreading everywhere, etc.
My son's OCD seemed to have started rather suddenly, too. He is 9-years-old and was diagnosed a year and a half ago. He used to take two showers a day, wash his hands up to 100 times a day, wouldn't touch certain things, etc., etc., etc. He was on Prozac for a year, but began taking Lexapro instead this past June. He also sees his therapist every week. He still has some OCD issues, but is much improved now. I understand how you must feel - it was extremely frustrating, scary, and sad at first. (Were your daughter's OCD symptoms different from your son's?) I bought several books about childhood OCD, but didn't find them especially helpful. I did find that having "parent sessions" with his therapist always made me feel more hopeful. Know that you are not alone. If you think of any specific questions, just ask. Things will get better!
Linda
P.S. How does your son do at school? That is still a problem for my son, with things getting "contaminated" and germs spreading everywhere, etc.
LisaBob
10-31-2006, 10:08 PM
Thank you so much for your response Linda. It's good to talk to another mom in the same boat.
My daughter's OCD symptoms are different than my son's. Hers came on more gradually. She cannot sit if a chair is dirty or the table (restaurant) is dirty or has any crumbs. I clean it and she puts her stuff on a napkin or we leave. If her silverware touches the table, she has to get a new set. If someone gets close to her face she gets VERY upset. She has curly hair but cannot stand it if it isn't completely flat. She also gets upset if the brush hangs up in her hair. She can't eat certain foods if the quantity is "wrong" (like serving her 5 taquitos). She also does some kind of mathematical equations when she sees certain things. If she sees words in some fonts she has to do some one-step change word game in her head, etc. She's been doing the desensitization therapy - with her cat (pet therapy) and a great therapist. We have an extraordinary amount of tears every day...We're worried about her.
My son had been seen previously for depression but hadn't had signs of OCD that were as outwardly obvious until recently. It is interesting that your son's was a quick onset too. Do you know why it's this way with some kids? Does your son do the desensitization therapy as well? Does it work?
My son's teachers have noted that in the last two weeks he's had a much more difficult time concentrating, he keeps leaving class to wash his hands and face, he can't touch a pencil or pen that someone else has used, etc. So, yeah, the contamination worries get in the way. He always kept up and completed all his work and did great on tests. Lately, he's slipping. Does you son have an IEP? Does the school help him in any way? My son's IEP only covers his Asperger's.
Sorry so many questions. As you already know, my head is spinning...
Lisa
My daughter's OCD symptoms are different than my son's. Hers came on more gradually. She cannot sit if a chair is dirty or the table (restaurant) is dirty or has any crumbs. I clean it and she puts her stuff on a napkin or we leave. If her silverware touches the table, she has to get a new set. If someone gets close to her face she gets VERY upset. She has curly hair but cannot stand it if it isn't completely flat. She also gets upset if the brush hangs up in her hair. She can't eat certain foods if the quantity is "wrong" (like serving her 5 taquitos). She also does some kind of mathematical equations when she sees certain things. If she sees words in some fonts she has to do some one-step change word game in her head, etc. She's been doing the desensitization therapy - with her cat (pet therapy) and a great therapist. We have an extraordinary amount of tears every day...We're worried about her.
My son had been seen previously for depression but hadn't had signs of OCD that were as outwardly obvious until recently. It is interesting that your son's was a quick onset too. Do you know why it's this way with some kids? Does your son do the desensitization therapy as well? Does it work?
My son's teachers have noted that in the last two weeks he's had a much more difficult time concentrating, he keeps leaving class to wash his hands and face, he can't touch a pencil or pen that someone else has used, etc. So, yeah, the contamination worries get in the way. He always kept up and completed all his work and did great on tests. Lately, he's slipping. Does you son have an IEP? Does the school help him in any way? My son's IEP only covers his Asperger's.
Sorry so many questions. As you already know, my head is spinning...
Lisa
GatsbyLuvr1920
11-01-2006, 12:32 AM
Finally! Someone with both Asperger's and OCD! It's so nice to hear about another case! :D I'm 19, college sophomore. I realized I had OCD when I was about 15 1/2, but I wasn't officially diagnosed with it until I was 17. I wasn't diagnosed with Asperger's until this past March, when I was 18 1/2. I'm the pure obsessional type, meaning that I have very few overt compulsions. My obsessions are my trouble. You mentioned quick onset in your son. Did he have a case of strep throat before his OCD began? If so, then I'd say that your son's OCD was a direct result of PANDAS (Pediatric Autoimmune Neurological Diseases Associated with Streptocci). Anyway, I've had obsessive-compulsive symptoms all of my life. I had clear-cut confessing compulsions at ages four and seven. I developed full-blown OCD at 11 1/2. I've had panic attacks almost daily since age three-five. I'll get anywhere from one to three a day, depending on how much stress there is. (I had two today- a moderately severe one and a mild one.) The Asperger's wasn't seen in me because it wasn't known about when I was a child- it wasn't even put in the DSM-IV until I was seven. However, had I been a toddler today, it would've been painfully obvious. It also wasn't detected because I was always the "perfect student" in school, and somehow managed to squeak by with straight "A's" all of my life, despite my nonverbal learning disabilities associated with the Asperger's. After being on three different SSRI's throughout the course of three years (Zoloft, then Lexapro, then Zoloft again, then Prozac), I am not currently on a medication for my OCD. I stopped the Prozac in May because it, like all of the other SSRI's, didn't really help much with my OCD (I still had two OCD breakdowns while taking them) and only made me extremely tired, to the point of not being able to function. I still have daily blasphemous and violent obsessions, but just a few more than I did while on the SSRI's. I take 100 mg daily of the mood stabilizer Lamictal, which has helped immensely with my mood swings and outbursts due to my Asperger's. I also take Klonopin as needed for my panic attacks, but since I get panic attacks practically daily and dealt with them for 18 years before getting Klonopin, I usually only take the Klonopin for really, really bad panic attacks. This may be as little as once every three weeks or so, even though I'm allowed to take it daily. Both OCD and Asperger's are a challenge to live with, but I honestly wouldn't wish either one away, no matter what problems they may cause. They make me who I am and define my personality. Having both is interesting because the obsessional parts of them are complete opposites. My OCD obsessions are horrible and anxiety-provoking, but my Asperger's "obsessions," or "special interests," cause me intense joy and happiness. In fact, I Love Lucy, A Beautiful Mind, and Frank Sinatra, three of my biggest obsessive fixations, is all that gives me relief some days... Good luck, God bless, and if you have any more questions, feel free to ask! :angel:
-GatsbyLuvr1920-
-GatsbyLuvr1920-
LisaBob
11-01-2006, 01:10 PM
Oh my - GatsbyLuvr - you've had a tough go! I'm so glad they were able to finally diagnose you so they could help you more potentially!
We'd always said our son "marches to the beat of a different drummer" and have implored his teachers to let him be who he is. We celebrate who he is and sometimes he finds a special teacher who does too.
His Asperger's was night and day onset at age 12 months - reaction to immunizations. He was a completely different child in 24 hours. I suppose he's always had a few obsessions. Rollercoasters is one. He can tell you just about anything about any coaster worldwide. He has software and designs them every day for hours. This has been going on for about 3 years or so.
The social side of Asperger's has been the most difficult - causing severe depression. It's hard to be different, know it and not really be able to do much about it. He's been an easy target for bullies. My job has been to try and help and protect them both. I have a sense that, at least for my son, once he makes it through high school, his world will be a kinder more forgiving place because he can utilize his passions (obsessions) to do anyting he wants - and do it well!
He didn't have strep throat. However, his teenage hormones have started kicking in over the last month or so. (My kids get stinky feet when they enter puberty...:dizzy: :eek: )
We are also worried that something could have happened to him. So far, our questioning hasn't turned anything up. I also had surgery about 2.5 weeks ago. Maybe that scared him? He spent the night at a friends house the night of my surgery - could something have happened there that he doesn't want to talk about? I don't know...
I have a call in to a child psychiatrist who's focus is OCD. I'm hoping to hear from him soon.
I'm sorry for your struggles GatsbyLuvr. You sound like a tremendous person!!! It gives me hope for my son doing so well!
Lisa
We'd always said our son "marches to the beat of a different drummer" and have implored his teachers to let him be who he is. We celebrate who he is and sometimes he finds a special teacher who does too.
His Asperger's was night and day onset at age 12 months - reaction to immunizations. He was a completely different child in 24 hours. I suppose he's always had a few obsessions. Rollercoasters is one. He can tell you just about anything about any coaster worldwide. He has software and designs them every day for hours. This has been going on for about 3 years or so.
The social side of Asperger's has been the most difficult - causing severe depression. It's hard to be different, know it and not really be able to do much about it. He's been an easy target for bullies. My job has been to try and help and protect them both. I have a sense that, at least for my son, once he makes it through high school, his world will be a kinder more forgiving place because he can utilize his passions (obsessions) to do anyting he wants - and do it well!
He didn't have strep throat. However, his teenage hormones have started kicking in over the last month or so. (My kids get stinky feet when they enter puberty...:dizzy: :eek: )
We are also worried that something could have happened to him. So far, our questioning hasn't turned anything up. I also had surgery about 2.5 weeks ago. Maybe that scared him? He spent the night at a friends house the night of my surgery - could something have happened there that he doesn't want to talk about? I don't know...
I have a call in to a child psychiatrist who's focus is OCD. I'm hoping to hear from him soon.
I'm sorry for your struggles GatsbyLuvr. You sound like a tremendous person!!! It gives me hope for my son doing so well!
Lisa
GatsbyLuvr1920
11-01-2006, 06:59 PM
OMG! One of my older obsessions was rollercoasters, too! :D Mine are Cedar Point's rollercoasters. I know all of the statistics. Does he know about those? Ask him how tall and fast the Magnum XL-200 is. If he says 205 ft up, 194 ft down, and 72 mph, then he's right... ;)
-GatsbyLuvr1920-
-GatsbyLuvr1920-
Linda in MI
11-02-2006, 02:11 AM
Whoa - I have an older son (college freshman) who also has a rollercoaster obsession! Just like you, GatsbyLuvr, he also knows all the stats on the Cedar Point coasters! Fortunately, he only has very mild obsessive-compulsive tendencies and has never had to seek treatment for them. Congratulations to you on your very positive attitude and obvious success in the face of adversity. You should be very proud of all you have accomplished.
Lisa - Your recent surgery may have something to do with the sudden onset of your son's OCD. Our psychologist determined that Jake's symptoms were the result of a car accident that killed his grandfather. (My father-in-law) I have heard that stress can trigger OCD. Kids worry so much more than they let us know about.
School has been very difficult since all this started. In fact, Jake just came home "sick" from school today. He is constantly distratcted, watching to see if other kids wash their hands after blowing their nose, using the bathroom, etc. His work began slipping last year and, as a result, he has fallen quite far behind. We had a bit of a battle with the school principal and his teacher last year. (Luckily, his current teacher is much more understanding and accommodating!) The principal told us he does not recommend an IEP, even though Jake could be catagorized as "emotionally impaired." He has also dissuaded us from pursuing a 504. I think we are at the point now that we have to do something to help him academically. I may have some IEP questions for you soon!
I hope your child psychiatrist gets back with you soon. I know how frustrating it can be to wait! By the way, my son also worries about dirty restaurant chairs and used to insist that everything on the table had to be on napkins - just like your daughter. Fortunately, he has relaxed quite a bit about this.
I hope today goes well for you. I'll be around to "talk." Linda
Lisa - Your recent surgery may have something to do with the sudden onset of your son's OCD. Our psychologist determined that Jake's symptoms were the result of a car accident that killed his grandfather. (My father-in-law) I have heard that stress can trigger OCD. Kids worry so much more than they let us know about.
School has been very difficult since all this started. In fact, Jake just came home "sick" from school today. He is constantly distratcted, watching to see if other kids wash their hands after blowing their nose, using the bathroom, etc. His work began slipping last year and, as a result, he has fallen quite far behind. We had a bit of a battle with the school principal and his teacher last year. (Luckily, his current teacher is much more understanding and accommodating!) The principal told us he does not recommend an IEP, even though Jake could be catagorized as "emotionally impaired." He has also dissuaded us from pursuing a 504. I think we are at the point now that we have to do something to help him academically. I may have some IEP questions for you soon!
I hope your child psychiatrist gets back with you soon. I know how frustrating it can be to wait! By the way, my son also worries about dirty restaurant chairs and used to insist that everything on the table had to be on napkins - just like your daughter. Fortunately, he has relaxed quite a bit about this.
I hope today goes well for you. I'll be around to "talk." Linda
LisaBob
11-02-2006, 03:26 PM
Ha ha GatsbyLuvr -
He was thrilled to see someone else who knows roller coasters. The amusement park of his dreams is Cedar Point! He begs us to take him there constantly. (I used to live in Ohio and went to CP when I was a baby!)
He was only off by a little on the speed but he had the other stats right.
Thanks for bringing us both a smile...:) You give us hope!
Lisa
============================
Linda
That's amazing about your older son and roller coasters!:)
Thank you for your valuable input about potential triggers.
I received a phone call from the educational specialist who manages our school's special needs kids. She's called an emergency IEP meeting, is hooking him back up with the social language specialist (just because he loves her so much and trusts her) and has offered to set up whatever additional counseling he may need - at school with one of their two psychologists. She had gone out and watched Braeden before and during school and talked with his teachers. She promised she would do anything she could to help him.
Like Jake, Braeden watches what everyone is doing, touching, etc. He checks to make sure hands are washed and everyone's clean. You are right, it's hard for them to do their work and concentrate if they're stressing about "clean."
I will be happy to help with any IEP questions I can. I did learn that schools won't usually do it unless forced by the parents. Braeden has an IEP (from the Asperger's) and Alaina has a 504 for the Tourette's and OCD. We had to get an "official written diagnosis" from a doctor or psychologist, take it to the school and request a meeting for help - they cannot deny you.
We knew that Alaina only needed the 504 because she didn't require any intervention or help - just that the school allow her to take extra time on tests if she was ticcing, tell ALL teachers and subs that she has Tourette's (she'd gotten in trouble for ticcing!) and be allowed to call me from her cell phone in a "personal emergency." Braeden needed help from the school. He needed to be kept on task, have some social language help, get his directions in writing and have the teacher make sure he understood what was required. Then he was fine! Now, I'm not sure what he will need but am glad they are willing to provide whatever it is...
I'm waiting response from two psychiatrists that were recommended by another child psychiatrist (who couldn't get him in) and a child psychologist (who is a friend). They both feel he may need to be medicated as well - at least initially.
Anyway, sorry for going on so long. I really do appreciate your help!!!
Lisa
He was thrilled to see someone else who knows roller coasters. The amusement park of his dreams is Cedar Point! He begs us to take him there constantly. (I used to live in Ohio and went to CP when I was a baby!)
He was only off by a little on the speed but he had the other stats right.
Thanks for bringing us both a smile...:) You give us hope!
Lisa
============================
Linda
That's amazing about your older son and roller coasters!:)
Thank you for your valuable input about potential triggers.
I received a phone call from the educational specialist who manages our school's special needs kids. She's called an emergency IEP meeting, is hooking him back up with the social language specialist (just because he loves her so much and trusts her) and has offered to set up whatever additional counseling he may need - at school with one of their two psychologists. She had gone out and watched Braeden before and during school and talked with his teachers. She promised she would do anything she could to help him.
Like Jake, Braeden watches what everyone is doing, touching, etc. He checks to make sure hands are washed and everyone's clean. You are right, it's hard for them to do their work and concentrate if they're stressing about "clean."
I will be happy to help with any IEP questions I can. I did learn that schools won't usually do it unless forced by the parents. Braeden has an IEP (from the Asperger's) and Alaina has a 504 for the Tourette's and OCD. We had to get an "official written diagnosis" from a doctor or psychologist, take it to the school and request a meeting for help - they cannot deny you.
We knew that Alaina only needed the 504 because she didn't require any intervention or help - just that the school allow her to take extra time on tests if she was ticcing, tell ALL teachers and subs that she has Tourette's (she'd gotten in trouble for ticcing!) and be allowed to call me from her cell phone in a "personal emergency." Braeden needed help from the school. He needed to be kept on task, have some social language help, get his directions in writing and have the teacher make sure he understood what was required. Then he was fine! Now, I'm not sure what he will need but am glad they are willing to provide whatever it is...
I'm waiting response from two psychiatrists that were recommended by another child psychiatrist (who couldn't get him in) and a child psychologist (who is a friend). They both feel he may need to be medicated as well - at least initially.
Anyway, sorry for going on so long. I really do appreciate your help!!!
Lisa
Linda in MI
11-09-2006, 12:40 AM
Hi Lisa,
How are things going? Your school district sounds wonderful. I wish ours was half as helpful. When you say that the school "cannot deny you" - do you mean that they must honor your request for a meeting or actually honor your request for an IEP (or 504)? I have heard that there are lots of stipulations, qualifications, and evaluations to go through. It would be no problem to get an "official diagnosis" from Jake's psychiatrist or psychologist. In fact, just this week he was also diagnosed with depression. Sigh!
You should take your son to Cedar Point sometime! If he really likes to ride roller coasters, he would just love it there. We go every summer - this year we went twice. (It is only about a 2 hour drive from our house.) The kids, and adults, too, always have so much fun. It is also much more reasonably priced than the Disney-type parks. We always get coupons or discounts of some sort and the daily price is only around $30.
Let me know what is going on whenever you get a chance. Linda
How are things going? Your school district sounds wonderful. I wish ours was half as helpful. When you say that the school "cannot deny you" - do you mean that they must honor your request for a meeting or actually honor your request for an IEP (or 504)? I have heard that there are lots of stipulations, qualifications, and evaluations to go through. It would be no problem to get an "official diagnosis" from Jake's psychiatrist or psychologist. In fact, just this week he was also diagnosed with depression. Sigh!
You should take your son to Cedar Point sometime! If he really likes to ride roller coasters, he would just love it there. We go every summer - this year we went twice. (It is only about a 2 hour drive from our house.) The kids, and adults, too, always have so much fun. It is also much more reasonably priced than the Disney-type parks. We always get coupons or discounts of some sort and the daily price is only around $30.
Let me know what is going on whenever you get a chance. Linda
LisaBob
11-09-2006, 05:12 PM
Hi Linda -
Thanks for asking on our progress. Both twins are now on meds and we'll begin a more intense desensitization therapy this weekend for both.
As far as the school goes, if you take in a written note of diagnosis from your doctor, psychiatrist or psychologist, they must honor your request for a meeting. If if whoever diagnosed it can come to the meeting as well - more the better for you. There are also "advocates" who can come and represent your son - to make sure the school is compliant with state laws regarding your child. Additionally, there are books on your rights and advocacy regarding education for special needs children.
It is illegal for your school to ignore your son's needs. You can contact your state's Department of Education and possibly get your rights in written form. Hint: your school will take you really seriously if you let them know you are seeking advocacy. Ours didn't offer help for years - even though they knew what my daughter's diagnosis was. We were told by a psychologist that the school had to accomodate her...that started the ball rolling for both kids.
I'm sorry about Jake's depression diagnosis. I feel like I'm on the very edge of hanging on this week myself.
Braeden's DREAM is Cedar Point!!! We will definitely take him there when we can afford a cross country trip!
Hang in there! Let me know how you go with Jake's school!
Lisa
Thanks for asking on our progress. Both twins are now on meds and we'll begin a more intense desensitization therapy this weekend for both.
As far as the school goes, if you take in a written note of diagnosis from your doctor, psychiatrist or psychologist, they must honor your request for a meeting. If if whoever diagnosed it can come to the meeting as well - more the better for you. There are also "advocates" who can come and represent your son - to make sure the school is compliant with state laws regarding your child. Additionally, there are books on your rights and advocacy regarding education for special needs children.
It is illegal for your school to ignore your son's needs. You can contact your state's Department of Education and possibly get your rights in written form. Hint: your school will take you really seriously if you let them know you are seeking advocacy. Ours didn't offer help for years - even though they knew what my daughter's diagnosis was. We were told by a psychologist that the school had to accomodate her...that started the ball rolling for both kids.
I'm sorry about Jake's depression diagnosis. I feel like I'm on the very edge of hanging on this week myself.
Braeden's DREAM is Cedar Point!!! We will definitely take him there when we can afford a cross country trip!
Hang in there! Let me know how you go with Jake's school!
Lisa