Thanks Thanks:  0
Likes Likes:  0
Results 1 to 9 of 9

Thread: Looking for support and advice

  1. #1
    Join Date
    May 2014
    Location
    Edmonton
    Posts
    12

    Default Looking for support and advice

    Hi Everyone, I'm new here and new to TS and Tic disorders. My 6 year old son is having issues with tics and getting support is proving to take a while. In hindsight my son first started displaying tic's last summer, and included blinking and thrusting his head back and his chin out. At that point, we didn't recognize them as tic's, just as some quirks that made him, him. Then he started with sniffing, and coughing. He also would do this double jump thing. Since then he has developed arm twitches, finger movements, snapping his jaw shut, grinding his teeth, barking, plus more. We went to our family doctor at the end of March and have a referral to a general pediatrician at the end of June. In the Interim he is starting to really struggle getting his schoolwork done, due to his tics (if he could dictate his work, he's fine, but to be able to sit and write it out, he can't get through it). We have met with his school, and we have started the process of getting him set up for an IEP, but no clue as to when that will be. He is currently sharing an aid with another student, but that's only because a student she use to support has left for the remainder of the year. Next year we may have no one.

    He's also struggling emotionally. He tells us he just wants to be 'normal' again. We do our best to console him, but he has become very moody and grumpy....but maybe the moody/grumpy is a normal 6 year old! We have a Tourette's clinic here, but we were told this weekend that even with a diagnosis, we may not get into the clinic. Not sure what the best course of action is to get him some support. Not sure what the pediatrician will be doing? Anyway, that's us in a nutshell!

  2. #2
    Join Date
    Oct 2007
    Location
    Paradise, NL
    Posts
    74

    Default Re: Looking for support and advice

    It sounds like you're on the right track to start - getting the IEP should help make sure that everyone (you, your son, and the school) understand what is expected of them. As I understand it, once the IEP is in place, the school is pretty much on the hook to have a support person, if that's part of the plan.

    Definitely reach out to the Edmonton chapter - I've met a few of the folks running things out your way, and they're great

  3. #3
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: Looking for support and advice

    Hello KBTyson!

    Welcome to the Forum.

    My 6 year old son is having issues with tics.......He tells us he just wants to be 'normal' again.
    I would want to investigate why he believes he is abnormal, because at his age of six, when his self awareness would not likely provide him with sufficient feedback as to his tic activity, it would almost seem someone has been providing your son with negative feedback when he expresses his tics.

    It might be inadvertent remarks made in the home that bring undue attention to his tics or perhaps a playmate, a parent of a playmate or school / kindergarten staff member who is teasing, embarrassing or even worse, reprimanding or punishing him for his symptoms.

    Matt's suggestion to link to your local TSFC Chapter would be your best course of action, so your son has the opportunity to meet other kids living with Tourette. He needs to be made aware his is not the only one in the world with the disorder and that his disorder does not define him.

    Your son has many many qualities that make up who he is, his intelligence, his creativity, his personality, his charm, his skills and talents.....his Tourette is only one small part of who he is and the focus needs to be on his other characteristics.

    You may also want to plan for introducing your son to the scores of kids who will be attending the TSFC National Conference in Vancouver in October 2015 where he can really gain some valuable perspective and you can gain invaluable information and support.

    In the meantime, we will be pleased to help provide insights and support to help you through this challenging time.

  4. #4
    Join Date
    May 2014
    Location
    Edmonton
    Posts
    12

    Default Re: Looking for support and advice

    Thanks for the reply Steve. I have been in touch with the Edmonton group and plan to attend the next meeting. I'm looking forward to attending. They are having a swim party on the 31, but unfortunately, we are out of town .

    I'm not sure where he came up with 'Normal'. I have talked to him about it, to see if anyone is teasing or talking to him about it, he said no. I don't think it would be at school as his school is a very inclusive school, and many of the classrooms have children with varying physical and cognitive abilities, so someone being unique isn't new for any of the kids. His teacher has been great about letting him leave the class when he needs to get his tics out and with accommodating him where he can.

    Because at first we didn't realize what we were dealing with, we tried to stop him from sniffing all the time. Since we figured it out we have explained to him that we shouldn't have done that and that home is a place where we won't ask him to stop.

    Right now we are just going through this blindly so I am looking forward to getting some support and feedback to help guide us to help him out.

    Thanks again for the feedback.

  5. #5
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: Looking for support and advice

    In light of your son's age (what is his name if you care to share it?) at age six, he likely has little if any developed self awareness of his tics. To him, his tics are part of his functioning as is his eye blink, his eye color, the way he walks and the way he holds his knife and fork...in other words it's part of who he is and is the difference between knowing that he tics as opposed to knowing when he tics or is about to tic.

    I would venture to say he doesn't know when he tics or is about to tic, the latter being the awareness of a premonitory urge that precedes the actual tic. It's a bit like the itch we feel from a mosquito bite that precedes the need to scratch.

    Children prior to the age of self awareness are usually unable to verbalize the premonitory urge, which usually matures around the age of ten.

    Using the awareness of when the tic is about to occur is one of the tools used in habit reversal and cognitive therapy (CBIT) to teach kids how to manage their tics without medication intervention, when appropriate.

    Home should be your son's "safe place" to express his tics with no interference from family. If he needs special accommodations in his room for certain tic expressions, then he should be provided what he needs.

    Good sleep hygiene habits, time to wind down before bedtime with no interference from electronic devices should help him with good quality sleep.

    Additionally relaxation exercises to help him in times of stress should provide him the tools to help settle him down and lessen tic activity.

    Tics are involuntary, but are influenced by environmental factors such a stress, fatigue and excitement. External factors can influence tic activity such as being teased or embarassed, hearing people cough, hearing people tic, talking about tics, being alone even watching TV.

    Tics can be made less frequent and intense when he can be engaged in a social activity or a sporting event. Tics are often entirely suppressed when engaged in an activity requiring focused attentions such as drawing, carving, painting, singing, or playing a musical instrument.

    Most important is for your son to develop self esteem and self confidence, knowing he can accomplish anything he wants in life...his Tourette does not have to be an obstacle.

    Read about my persona hero, Dr. Mort Doran from Cranbrooke, a neurosurgeon who happens to have Tourette.

    Then have a look at the many many stories of Tourette heroes who have extraordinary accomplishments HERE


    Have a look through the Forum, post as many questions as you might have and feel free to respond to any ongoing discussion.

    We're here to help and look forward to working with you gathering information to help your son.

  6. #6
    Join Date
    May 2014
    Location
    Edmonton
    Posts
    12

    Default Re: Looking for support and advice

    My son's name is Aiden. One of the reasons we came to the realization that what we were seeing were tics was because he asked 'mommy, why can't I stop my body from doing these things'. His tics literally went from virtually nothing last summer, to noticeable by December, to extream by April. Prior to December, A grade one home reading book that may have taken him 10 minutes to read and write the title in his Journal can take him up to, and even more than, an hour if he is having a bad night. His tic's are exasperated by fatigue, excitement, stress, boredom, and if he gets too far off his schedule. Sleep is a big issue as he has a very hard time winding down and is usually up quite early. I'm looking forward to lots of reading and sharing of information.

  7. #7
    Join Date
    Oct 2007
    Location
    Paradise, NL
    Posts
    74

    Default Re: Looking for support and advice

    Steve's right about the conference - I suspect your son would get a lot out of seeing other kids with TS

    Difficulties with sleep seem to be common in folks with TS, and the best thing for that is good sleep hygiene. Basically, it boils down to reducing things that excite the brain before bed. For example, no screen time for an hour or two before bed, because most screens give off light at the blue end of the spectrum, which triggers the brain to think it's time to be awake. Another is to try and keep fluid intake down to a minimum for an hour before bed, to make sure the bladder doesn't disturb sleep.

  8. #8
    Join Date
    May 2014
    Location
    Edmonton
    Posts
    12

    Default Re: Looking for support and advice

    We try to keep his routine as consistent as possible. Generally we eat early, between 5 and 6, he does his homework, reading and spelling for the most part. They can play if there is time, usually with his hot wheels or lego. 7-7:30 is a quick bath (15 minutes each kid), story, lights out before, or no later than 8. We've tried warm milk, which seems to help a little, as well as relaxing essential oils, such as Lavender. Tonight he finally fell asleep at 9:30. Tomorrow at school they have Phys Ed first thing, so I will see if he will sleep in a little and miss phys ed if needed. However, if it's like any other day, he will probably be up around 5:30.

  9. #9
    Join Date
    May 2014
    Location
    Austin Texas, USA
    Age
    40
    Posts
    119

    Default Re: Looking for support and advice

    In the Interim he is starting to really struggle getting his schoolwork done, due to his tics (if he could dictate his work, he's fine, but to be able to sit and write it out, he can't get through it). We have met with his school, and we have started the process of getting him set up for an IEP, but no clue as to when that will be.
    Controlling the urges is a thing that will take time, especially because your son is so young and bodily control in social in different contexts is something children are learning at that stage. But this is a matter of your son's learning being shaped differently so in some respects it might help to think of a part of the issue being that you son will take some extra repetitions to master a particular thing. But one of the neat things about TS is that there are some mental advantages as well. For me those seemed to manifest as knowledge getting embedded really deeply and strongly when I finally got more control of things (but errors would also get embedded strongly and occasionally took a lot of work to root out!), deeply embedded knowledge can be summoned quickly and with great skill. You may see places where he is doing particularly well, don't forget to point those out.

    He is currently sharing an aid with another student, but that's only because a student she use to support has left for the remainder of the year. Next year we may have no one.
    There is always the internet. Try to work with the aid on learning about how the help they are bringing works in a broad sense, and what sorts of science those techniques come from. This might help you to pick up on similar resources on-line in a worst case scenario.

    He's also struggling emotionally. He tells us he just wants to be 'normal' again. We do our best to console him, but he has become very moody and grumpy....but maybe the moody/grumpy is a normal 6 year old!
    Steve had a good point in that he is getting this idea that he is not "normal" somewhere. It's possible that just getting the diagnosis, and the reaction to it was enough for him to see it as a "bad thing" when honestly science is right in the middle of figuring out what "normal" breaks down into. Combined with the fact that there are all these messages in school that unconsciously tell children that they are all trying to become the same thing in lots of ways and things can get contradictory in the wrong places. Try telling him that there is no normal and point out all the different kinds of kids around him. Find him some TS role-models. This guy is my favorite,
    Samuel Johnson - Wikipedia, the free encyclopedia
    I have a suspicion that TS comes along with enhancements in pattern recognition pertaining to rules in rule-based systems. This guy largely invented the modern dictionary, a feat that took him nine years by himself, but took 40 academic contemporaries 40 years. I see many of our strengths and weaknesses in Dr. Johnson (really good with learning general rules in behavior and more complex things like math rules and language rules, but can be rusty with some details. Think about the absent-minded genius stereotype.)
    A Dictionary of the English Language - Wikipedia, the free encyclopedia

    We have a Tourette's clinic here, but we were told this weekend that even with a diagnosis, we may not get into the clinic. Not sure what the best course of action is to get him some support. Not sure what the pediatrician will be doing? Anyway, that's us in a nutshell!
    You will find something local eventually, but don't sell yourself short because asking around among other people with TS is a good course of action.

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •