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I Think I Fell Down the Rabbit Hole.....

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  • I Think I Fell Down the Rabbit Hole.....

    This is a strange new world for us - my daughter and I. I never, ever would have thought *it* was TS.

    I have been told that *It* was bad parenting, crappy genes, and early childhood trauma. According to daycare providers, Youth & Family Services, my family, her birthfather's family, - *It* was caused by something I did.

    DD's issues became apparent within the first year of life. She was exceptionally sensitive to auditory, tactile, and visual stimuli. A thread in the toe of a sock, the sound of running water, an embroidered wall hanging each had the power to trigger an outburst of epic proportions. Tantrums didn't last 20 minutes. They could go on for hours - 2, 3, even 5. Food aversions, fears of particular words, obsessive, controlling behaviors have had me on eggshells for nearly 8 years.

    At some point this summer DD began throwing her head back while sticking out her tongue. Then she started repeatedly scraping her teeth across her lips, leading to deep cracks and cold sores. One evening she ran down the stairs shrieking , "I can make my toes stop jumping." A couple days later she told me that her knees had 'weird magnets' in them which made her knees keep bending even though she told them to stop.


    Four weeks ago I had taken her into the ER because I was concerned that she might be experiencing some form of psychosis. She was sitting on the couch watching me crochet when she very calmly told me that she had bad thoughts when she was with her brother (he's 2). Not wanting to ask any sort of leading questions, I asked her if she could tell me what it was about her thoughts that made her think they were bad. She then shared a detailed account of how her 2 year old brother had misbehaved on an airplane during a family trip (neither she nor her brother have ever been any where NEAR an airplane). According to DD, her DB had opened the airplane door and 'made everyone fall out'. She then said, "I know he's little mommy but I think he should get in trouble." As luck would have it, our family doc was in the ER that night. As we were chatting, DD was 'tic(ing)' to beat the band. He scribbled something down on a post-it then passed it to me. Written in bold was TOURETTES. Combined with her behavioral history, a TS dx made a lot of sense to both her doctor and I.

    Our family doctor had recently hired a new associate. This new doctor had come to Canada from Europe where she had practised as a pediatrican. After obtaining licensure here, she has joined our GP's family practise. She has always had a particular interest in pediatric neuropsychiatry and had recently returned from a conference focusing on TS. We are exploring alternate methods of treament in addition to conventional therapies. Except for occasional use of Chloral Hydrate as nighttime sedation, DD is unmedicated.

    Her tics have become so severe during the last 2 months that I am reconsidering homeschooling. Is it possible that the added stress of a new school year is making her tics worse ? What about nutrition ?
    What else can I do ? I hurt for her. I cry WITH her. When my baby girl, my barely 8 yr old tells me that she wants to leave her life, WHAT DO I DO ?

  • #2
    Re: I Think I Fell Down the Rabbit Hole.....

    Oh, MommyB, I truly feel for you. :'( If there is anywhere you can go that can be of some sort of reassurance, I would have to say this is it.

    I, too, have heard the gammet of "he's doing this deliberately", and "this is a learned behaviour" and "you will need to attend parenting courses"...I have questioned my parenting skills for almost 11 years.

    For me, it was almost a relief to receive a dx during the summer. I now KNOW that I have done an incredible job of parenting both of my high needs kids, and it is incredible how teachers react differently towards him when I explain the dx.

    My younger son (he doesn't have TS) tried to jump in front of a bus last May - and rather than realize that he was asking for help in his own way, the principal suspended him from school for 5 days and told him "everyone was sick of his behaviour." He is now seeing a pyscriatrist, and being treated for his anxiety, and doing much better. I think the sooner more people realize that children can and do have mental health issues, the better off they will be. I am sure that your doctors will do all they can to address your dd's levels of anxiety, and if you stress to them how badly she has been feeling, it should be sooner rather than later.

    It sounds to me like your dd has a great support system in you, and it also sounds like you have some well-informed doctors. I know my ds' tics do increase greatly when he is under a lot of stress - both positive and negative - so it could be that she is stressed about ticcing while in school. It may be very benefical to see if you can have some in-servicing arranged for your daughter's school - it will help all the adults and the students understand why she does what she does. But, if it is an option for you, homeschooling may be an option, too. Personally I couldn't do that, but it seems that there are a lot of people that are able to do that very successfully, and given our children's lessened social skills, I sometimes think that may be the better way...

    I'm sorry if my post hasn't really answered your questions, but my heart was breaking for you as I was reading your post. And I just wanted to let you know that you are not alone in this, and I am sure other members of this forum will be able to help you with your questions.

    Be well,
    Jori

    Comment


    • #3
      Re: I Think I Fell Down the Rabbit Hole.....

      Thanks so much for the kind words.

      I'm just very, very tired. I never thought parenting would be easy. I remember as a child how my mother would look at me, shake her head, and say, "One day you too will have children." ... I guess that was her way of saying what goes around comes around: however, after observing several years of DD's behaviors, she feels karma went a bit overboard ;), lol.

      In my heart, I know that this will end up with me pulling her from school again. I did so briefly during her grade one year after she had experienced 3 weeks straight of full blown panic attacks and bed wetting. She was so lonely though :-[. She is now in grade 3 and every single day is a struggle - for both of us.
      She is having social and academic difficulties. The social stuff is due in part to the tics and anxiety. Academically, she struggles with focus (her tics affect her ability to sit still), her printing is still at a grade low grd 1 level.

      I think the idea about doing an in-service is great. It would certainly be an improvment on what has taken place thus far. We have tried school based team meetings where
      her teacher, the principal, school psychologist, LA teacher and myself all get together for a roundtable.
      So far the meetings have been unproductive. They sit there, rolling thier eyes, - not so subtley saying, "This mother is a crack pot. Must be where her daughter gets it from." I get tired of fighting. I would prefer to focus my energies on keeping my child safe and healthy rather than trying to convince the powers-that-be of DD's need for additional supports.

      She wants approval so badly. She is such a compassionate, generous kid. I hate to see her feeling so badly about herself.

      Comment


      • #4
        Re: I Think I Fell Down the Rabbit Hole.....

        Welcome to the TSFC Forum MommyB. We are here for you to talk about your questions and concerns for your daughter in connection with her Tourette.

        Is there a local Chapter of TSFC on your area? Click Here for a list

        Has your daughter been evaluated by any other specialists in connection with her behaviours?

        Steve
        TouretteLinks Forum

        Comment


        • #5
          Re: I Think I Fell Down the Rabbit Hole.....

          Welcome to the forum MommyB!

          I am glad you found us. This forum is a valuable place where you can find support and understanding.

          Most of us have been exactly where you are now. My son is now in Grade 7 and we still struggle with educating the schools and teachers. It does get tiring and overwhelming at times and there are many days where I just want to give up and shelter my son from the world.

          When those times come I access the supports I have built around us. They are invaluable to us TS parents.

          Our family attends counselling and has done so for 6 years now. We have found it very helpful. The Cognitive Behaviour Therapist works with our son in developing strategies for him to deal with his symptoms. He also spends time with us going over strategies we can try at home. Sometimes he will talk to the school to give them strategies as well. You may want to investigate this avenue. Your doctor should be able to point you in the right direction.

          Does your school board have a department of Education Specialists that work with the schools in developing an education plan for special needs children? You may want to look into that. This has helped in our case to have them involved.

          Does you doctor or school board have Psychiatric nurses who are specifically trained in TS/OCD that could go out to the school to offer support. We have also utilized this option since mid grade 6 and it has really made a difference.

          Does you doctor have his or her own nurse that would be willing to talk to the school to offer strategies?

          Does your child have an individual program plan (IPP) at school? This is what it is called in Alberta. There are similar things in other provinces. This plan outlines all of the supports, accomodations, and strategies your child needs and must legally be followed by the school. Goals are also in place on this plan that your child will work towards.

          Finally is there a TSFC support group in your area? They can point you in the right direction to find many of the supports I mentioned above. If there are no groups in your area the National office may be able to assist you in finding supports. The number is 1-800-361-3120.

          Hang in there! It will get better. We are here for you any time you need us. Please let us know how you are making out and if you have any further questions or need further information or just want to vent know you have come to the right place.

          Patti

          Comment


          • #6
            Re: I Think I Fell Down the Rabbit Hole.....

            Hi, MommyB! You're now home, rather than in the rabbit hole! Welcome to the TSFC Forum where we don't roll our eyes at all. We nod our heads and track with you because, in one way or another, we have all been there! The good thing is that there's nothing that will shock other Touretters or parents of TS kids and it's immensely freeing to know you're not alone.

            The other thing is that TSFC has encouraged us to see the good things that come along with TS. My 15 yr. old has gone from being very angry about being "different" to accepting that some of his giftedness in the creative arts is linked to his TS (all the extra neuronal activity comes in handy when you're on an improv team!) so he no longer wants to separate it off--it's just a part of who he is and everyone has something different.

            Spend some time finding out about some of the "cool people" with TS like Dr. Duncan McKinley (who writes a column for the TSFC newsletter and who is featured in several articles and documentaries available from the Foundation). My son adores Dr. Dunc, whom he met at a TSFC convention in Vancouver two years ago. What I found is that my son felt alone even when he was surrounded by "normies" but he came alive when he realized that he was part of the larger TS community. If you live close to a chapter, get involved or find out if there's a contact person near you. I'm a contact person in a small community and spend hours on the phone sometimes with parents who just need reassurance or acceptance. I also do in service presentations, which I highly recommend. The educators need to be educated too!

            As for homeschooling, we have done it on and off for years, depending on my son's situation. In BC, where we live, it's getting more and more flexible to change between the two systems. As a parent who's been in the school system for over 25 yrs., I would recommend taking a year by year or even month by month approach, rather than feeling like you've "failed" and have to pull your child out in a crisis mode and "settle" for homeschooling. There's a huge homeschooling network that you can also be part of. In our community, the distance education school provides a day a week of in-school classes with a teacher and the parents have organized swimming lessons, skiing, drama, etc. It actually got to the point where we had to say no to some things to get any school work done! It worked well for my son to work on his subjects between 4 and 10 PM, rather than the 9 am - noon I would have preferred! We had to learn that!

            My son still tends to pal around with the other kids who have been homeschooled, even though he's in full-time secondary school right now. He's found over the years that the homeschooled kids are much more accepting and less focused on ages--he's played with whole families of kids rather than just the one or two who are his age. There's a bond there. You can also take the time, if you're able to be home, to find out what your dd's passions are and to nurture them. The days of dry and dull correspondence are over! I suggest you hook up with the homeschoolers in your area and learn the ropes from them! You can get incredible accomodations with the schoolwork and I found that it was much easier to go through the distance ed. school for things like psych-ed. assessments. My recommendation here would be to choose positively for your child, rather than being forced into a "solution" you're not comfortable with. There are some downsides to homeschooling but most of them can be overcome if you join up with others. We have done straight homeschooling, 100% in-school, and various combinations of homeschool plus in school. Right now, my son is in school full-time but still takes PE at distance ed. because of body image issues. That way, he avoids the shower room and gets credit for the 5 dance classes he takes a week. Painless!

            You sound like a fully committed Mom who's going to find safe and good solutions to the obstacles your daughter's facing in the school system. Don't be afraid to pick and choose what you need from the various systems and to buddy up with others in your area who have "been there"!

            One thing about these kids is that they learn more by modelling than by rote memorization of facts so your daughter will grow by being part of a team with you and others (doctors, teachers, TS parents) to get the best solutions to some of these "problems". Your dd is not the problem and problems are just bumps in the road to be gotten over. My son still refers to my husband and I as "the team" and, difficult as he can be sometimes, even he admits that we have a far closer relationship than most of his friends and their parents. That's one of the pluses of TS: we've been "forced" to pay attention and get involved rather than just letting a system bring him up!

            Keep searching and talking, MommyB, and you're going to find all kinds of growing times mixed in with the challenges! I look forward to hearing more from you on the forum! I can tell you're a go-getter!

            Comment


            • #7
              Re: I Think I Fell Down the Rabbit Hole.....

              Hi MommyB:

              I am glad you have found our forum. Hopefully you will get lots of support from the postings here.

              Her tics have become so severe during the last 2 months that I am reconsidering homeschooling. Is it possible that the added stress of a new school year is making her tics worse ? What about nutrition ?
              Tics can become much worse at the beginning of the school year and then they usually calm down. With my son I found it was into November or even later before they really calmed down -- it depended somewhat on the teacher and how much accommodation he got (e.g. being able to leave the class when his tics were a problem).

              I would not automatically move to home schooling because of your daughter's tics. There are other things to try first. Check with the TSFC National office (1-800-361-3120) and see if there is an in-service presenter in your area who could do a presentation to your child's teachers and/or her class. Making sure the teacher understands the nature of TS and has strategies for the classroom can go a long way towards making school much less stressful and more rewarding.

              If an in-service is not possible, ask your school to purchase the Educator's Kit, or at the very least, Understanding Tourette Syndrome: A Handbook for Educators. Even if you have an in-service, you may want to get the handbook for your child's teacher. Some parents highlight the parts of the book that apply to their child and give the handbook to the teacher. That way you are not asking them to read the whole book, but are providing some information and strategies that will be immediately useful.

              One thing I remember being told when we were trying to decide where to place my son for school was to think what our ultimate goal is. For us, we want our children to have the best possible education. We also want them to have the courage to be who they are, tics and all. We want them to know that if someone doesn't like it because they tic then it is their problem and not our kids problem. For us, homeschool was not a good option, so we worked with the school when we could, and withdrew him from the public system to a small, private school when that proved to be a better option.

              So far the meetings have been unproductive. They sit there, rolling thier eyes, - not so subtley saying, "This mother is a crack pot. Must be where her daughter gets it from." I get tired of fighting. I would prefer to focus my energies on keeping my child safe and healthy rather than trying to convince the powers-that-be of DD's need for additional supports.
              An in-service or the Educators Kit can certainly help with this. Unfortunately many teachers and principals do not understand the realities of dealing with Tourette. and because some of the behaviours seem willful they start thinking the parents are the problem. Many of us have been through this. I have found the best thing to do is become as educated as possible about Tourette, any associated disorders your child is dealing with and learn strategies that may help in the classroom. Work with the school to get an in-service and then keep in touch with your child's teachers. Also become knowledgeable about the programs available in your school system, and the IPRC (Identification, Placement and Review Committee) and IEP (Individual Education Plans) (NB. Different names used in different provinces -- these are the identification of special needs and the program put in place for your child to address those needs).

              As you can see from all the responses here, you are not alone.

              Cathy
              Forum Moderator

              Comment


              • #8
                Re: I Think I Fell Down the Rabbit Hole.....

                MommyB

                I am so glad you found us and may I offer a belated welcome.

                For some understanding more about TS and getting that diagnosis can help with the transition and in our case for my own son it seemed too. We still had some emotional times though going through the process and dealing with roller coaster emotions.
                You need to find all the support you can get and arm yourself with knowledge about the condition to offer some guidance to the school.
                I've sat at the round table before too and often it does not work when there is not a clear view of the person we are discussing. You can understand the foundation of TS but if you do not understand how to be flexible and apply it to the children in need it makes it tough on everyone.

                My own son had bad thoughts and what I would consider just mind trips not understanding his place in life. This is something his physician should know about in detail.
                Added stress of trying to fit in at school, added stress of just existing can push anyone to the breaking point and as a parent you doing everything in your power to make it better but sometimes it just does not seem enough.

                Self esteem can be an issue through the process for some like my son. I made time just for him to do special things with him and found interests he really was drawn too to share and build on. If a child can find their gift or talent then everything else can be managed a little easier. This time also reinforced the support I was already providing and he drew strength for that.

                Journalize the experiences, use the crisis line for your local Mental Health Department to talk about your feelings and concerns and use the local ER for assistance instead of just getting through one more evening.
                All these tools will bring your experiences up to the front and get the attention you need for our daughter. It can also offer some peace of mind.

                Has your daughter had any other diagnosis from the physician? It is common to need extra help in some cases like mine during the transitional period and keeping everyone informed makes a difference and the going concern clear. I'd stress these concerns at that round table too. It can provide additional support for both of you and a clearer picture of what you are living.

                I am so glad you found us and please be assured in time there is light at the end of that rabbit hole you feel you fell into too.

                Please keep us posted and use this form to vent and express your feelings and concerns. Do some serious reading on the parent section, tic parade and use the search tool above for specific topics relating to our situation. It all makes it easier to cope with.
                PJK

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