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New here with a 6 year old with Tourette's, OCD, ODD, ADHD+

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  • New here with a 6 year old with Tourette's, OCD, ODD, ADHD+

    Hello, My name is Sara. I am a mother of 3. My only son and middle child was diagnosed with Tourette's, ADHD, OCD, ODD and sensory Integration Dysfunction last spring. I first notices the tics shortly after his 5th birthday. It started with a head tic, it got so bad that his head would fall to his shoulder then roll to the other side and fall on the other shoulder. During these episodes he would make a throat sound. It was dificulty to figure out why this was happening as they were not quick sudden jerks. It would happen about 40 times an hour, sometimes they would be back to back about 4 in a row. Then it disappeared! Then he started clearing his throat. This would come and go and even went away for a wile. Well now he has had eye blinking tics, constant throat clearing, arm tics, kissing tics and vocal tics such as repeating a word or a innapropriate phrase. The hardest thing to deal with is the constant obsessions and innatention, memory deficits, learning disabilities and hyperactivity. It seems like my poor little guy never gets a break! He gets intrusive thoughts and innapropriate behaviour. He is really a good little boy that is very very loving and sensitive....sometimes to sensitive and loving...obsessive in nature.

    I am having a hard time getting any assistance for my son at school. He has difficulty coping and learning. This is his second year in kindergarden and he still is not ready for the demands of grade 1. He is a very intellegent little boy however he learns differently than the norm. Currently he is on Strattera and seems much calmer. I just do not know how to make the school understand. I live in a small town in Ontario and there is no support groups or help for dealing with my son's difficulties. I feel like I am fighting a loosing battle because there is no understanding or support!

    It seems that my son goes through cycles and sometimes one disorder is more pronounced than another, then it changes and another disorder becomes more pronounced. I am not sure what to expect with his tics...he can go months with no tics than all of a sudden they increase, reach a peak then go away.

    I am looking to talk to people who understand and can relate. I also thought about taking him to a Tourette's specialist in Toronto! Any recomendations?

  • #2
    We've been there

    I understand what you have been going through. We had our boy now 11 yrs old assessed after behavior problems in school. CMH is tied to a program called Shared Services that pushes children to be assessed to help the school and family understand how to care for the child in a home and school setting.
    This is were TS was mentioned. We already knew he had ADHD & ODD. The combination of all these disorders can be overwhelming as a caring parent and we have found the same concerns in the school.

    If you have a local Community Mental Health Dept they may be able to work with the school to provide some assistance. The Catholic school we originally had our son in was lost. The public system seems to have more resources to deal with the problems and frustrations of these conditions.

    CMH sent us to Dr. Clinton in Hamilton, Lynwood Hall, for the assessment. She was a God Send and understood the problems clearly. We also were sent to a Pediactric specializing in the disorders from our family Doctor.

    Either way it is worth the drive to find help.

    About the reading problem. Our boy had motor skill problems early on and was put back one year to help him hold a pencil. Though he had problems he was a very good reader but not out load. We used Reader Rabbit and it helped a lot. We found he did not want to speak up in class or read out load. He also did not and still does not like someone seeing his writing. We used the computer as a tool for this and he likes writing on the computer much more then using a pen or pencil. He writes stories and copies notes for his games.

    I hope this helps you some. If you have ICQ, my number is listed. You are welcome to contact me for support. We are still learning but together may be able to make the system work for our children.


    • #3
      New here with a 6 year old with Tourette's, OCD, ODD, ADHD+

      I am not new to The TSFC but I am new to the forum and I am amazed at the need for more information to be spread and received!
      I agree with the respondent in that the Public School Board is more "advanced" in coping and dealing with children's exceptionalities. As a parent, you will need to inform yourself to the point that you are an expert!! Do not let the administrative staff or school board intimidate you with their jargon. You will here all the acronyms that will be used to make you feel uncomfortable. You son needs an IPRC (identification, placement, review committee meeting). By provinical law, if you request one in writing, it has to be followed through. This letter goes to your principle and it would not hurt to send a copy to your school board (director). Who are the ISSP (in school support personnel) in your school. These are the people that help the kids that have learning disabilities or other exceptionalities. We live in Mississauga and our kids attend a school that is "attuned" based on Dr. Mel Levine's priciples discussed in his book "One Mind at a Time". I encourage all parents to read this book. It doesn't deal specifically with TS but you may find issues that apply to you and your son!! My husband and I had to advocate strongly for our son and this was with a school that was enlightened. What's worse is that this is but the first battle in our son's education!!


      • #4
        New here with a 6 year old with Tourette's, OCD, ODD, ADHD+

        My son is 6.5, diagnosed this past fall with TS. He also likely qualifies for a ADHD diagnosis but there are also many other factors that could contribute to his presentation so we are not too worried about a definitive diagnosis on the ADHD right now.
        In my work, with families with infants/preschoolers with special needs I deal with all schoolboards in our area (windsor, Ontario). I find there are pro's and con's to each board as to their practices and philosophies in the area of special education. My son is in a Catholic school and while at times we hit rough patches(and boy were those times rough and I anticipate many more), for the most part they have put in every resource possible. He was identified in SK (through IPRC) and an IEP has since been in place. He has an EA in his classroom that essentially divides his time between my son and another child but due to saftey issues my son is always with someone. As well, he is pulled out for daily reading recovery/resource intervention and receives weekly O.T.. He was in Speech (weekly) last year but no longer requires it.

        I am not listing all of this to gloat about what my son has but more to show what can be done, a lot depends on the principal and school board. As well, it really lands on parents to advocate for their child's rights and the Ministry does not make it easy for parents to navigate the system. Especially with each and every school board in every part of the province (sorry I am talking exclusively of Ontario as I don't know how it is in other provinces) interpreting things like special education and the safe school's act differently.

        Sara - in response to your post in particular. I feel for you, feeling cut off from resources and supports - trying to get people to listen to you and provide something for your son. If you feel comfortable answering - what part of Ontario are you in? I am just thinking I might be of some assistance to you, but more so if you are in an area I am familiar with. Regardless of where you live in Ontario, your child's rights are the same. It is just hard when children are young and TS and its related conditions are so often interpreted as "misbehaving" or not severe enough to warrant intervention. Let me know if I can help in any way.



        • #5
          Re: New here with a 6 year old with Tourette's, OCD, ODD, ADHD+

          I was looking for information on Strattera today and found this posting that is 2 years old. I am hoping for an update from this Mom Sara who has a boy that was on Stattera 2 years ago. Her son sounds like my son's twin. After being diagnosed with OCD last year at 6, and having varying tics on and off for about a year and a half, now at 7 in grade 1 he was diagnosed with ADHD combined type. The doctors suggest Strattera to help him achieve his potential- as he tested much higher than avearage (in the 90 and above percentile) in numerous areas, but is being limited by the attention deficit problems.- can't finish school work,sometimes just won't do it all etc. It is sad for me to see the frustration and anxiety that my bright, enthusiastic boy experiences, but I am so wary of the medications. I was told that Strattera seems to work best when there have been no prior medications- which is our case. Any updates or advice on Strattera?
          Thanks for listening.


          • #6
            Re: New here with a 6 year old with Tourette's, OCD, ODD, ADHD+

            Hi Cindy!!!

            I understand how you feel. I just found out about my son at the end of March. He has TS+ (Anxiety disorder, ADHD (inattentive), LD). I am waiting for an appointment with Dr Carroll (psychiatrist that specializes in TS) to go the MEDS route. I don't even know where to begin.

            As for Strattera, I have a friend in Winnipeg that both of her kids have ADHD and they are on it. From what I have heard from her this is their drug. They do so well on it.

            I am sorry I am not much of a help. I hope you find your answers soon.


            • #7
              Re: New here with a 6 year old with Tourette's, OCD, ODD, ADHD+
              Dear Sara, my name is Raymond Vacchino. I am an international concert pianist and have TS. I would get severe head jerking causing unberable whiplash pain.
              I also work with children with TS and other concerns through Music Therapy. I had a message ready to send to you but if you write for too long the message gets lost.
              So, I will just tell you that I am a forum member and author of articles on Music Therapy/an alternative treatment. You can read my articles by clicking on alternative therapies or find my name beside a music therapy thread and click. All of my information will be there for you to read. I find the music in everyone I meet.
              Music has the healing power and potential to help so many children and adults. Even classroom conditions are apart of music therapy. It is worthwhile reading about and considering!! I was going to suggest a doctor but I see many people have already made suggestions. I would love to discuss the power of MUSIC with you at anytime.
              You can e-mail me, my address is available and I will also give you my home phone number, please do not share it.
              (416-421-0555) I look forward to hearing from you so we can talk about just how much Music Therapy can provide for your son.
              Take care!