Darlene Wierski-Devoe and her husband, Dave Devoe, believe that it was only their constant pressure on doctors and programs that got help early for their daughter, Sydney, who was diagnosed with anxiety disorder at the age of 3.
Her specific condition, social anxiety, is essentially an extreme, persistent and disabling form of shyness that leaves people dreading even the most mundane social interaction.
At first, Sydney was suspected of having autism, but her parents kept pushing for a more thorough assessment. They were put on waiting lists and Ms. Wierski-Devoe would call nearly every week to check their standing. She spent long hours at clinics and tried to help Sydney at home.
And it was at their first appointment with a developmental pediatrician that Heather Bishop and Sean Quigley heard their daughter, Erynn, then 5, might have biopolar disorder a disease they did not even know kids could get. The doctor was reluctant to pin her down so early, and prescribed Ritalin to treat attention deficit disorder.
When she was told about the medication after bedtime stories that night, Erynn asked, "Mommy, can I take the pills all my life?"
For the first time, Ms. Bishop recalls with tears, "I realized Erynn understood how different she was."
But Mr. Quigley and Ms. Bishop soon discovered, like so many families, that a diagnosis was just the start of more problems, at school and at home, while her psychiatrist struggled to find the best way to treat her.
Both families have struggled for years, trying to get their daughters diagnosed, treated and accepted. It's an ongoing challenge they spoke of candidly for the Breakdown series in Saturday's Globe and Mail.
So we're pleased that both Darlene Wierski-Devoe, Heather Bishop and Sean Quigley have joined us for a live online discussion, to take questions about coping and caring for a child with a mental illness.
Send your questions now and read their answers, which will be posted at the bottom of the page.
Editor's Note: globeandmail.com editors will read and allow or reject each question/comment. Comments/questions may be edited for length or clarity. HTML is not allowed. We will not publish questions/comments that include personal attacks on participants in these discussions, that make false or unsubstantiated allegations, that purport to quote people or reports where the purported quote or fact cannot be easily verified, or questions/comments that include vulgar language or libellous statements. Preference will be given to readers who submit questions/comments using their full name and home town, rather than a pseudonym.
Christine Diemert, globeandmail.com: Thanks to Darlene Wierski-Devoe for sharing your story with The Globe and joining us today to answer questions from our readers about coping and caring for a child with a mental illness. I'd like to start the discussion by asking, what is your greatest hope for your daughter Sydney as she goes through her life? Also, what is your greatest fear?
Darlene Wierski-Devoe: It is my pleasure to be here answering questions today.
My greatest hope for Sydney is by far that she will grow up being able to realize how much potential she has. I want nothing more for her than for her to wake up in the morning and not fear the day but embrace it. I want her to be able to walk into a room full of people and not feel like all eyes and on her and feel immobilized.
I recognize that anxiety will be with her every day of her life but I want her to be able to grow strong and confident and have friends. I think one of the hardest things for me right now as a parent is seeing how many of the children want to be her friend but are confused by her actions. One minute she's chatty and the next minute she's burying her head. I want her to be able to have friends and enjoy life instead of watching it all go by.
My greatest fear, that's a hard question really because I always fear for her future. We are in a great place right now and we have understanding and co-operation but I can't say if it will always be like that. I worry that in her years to come if she can't battle the "anxiety monster" as we call it she will be on the sidelines and misunderstood.
Christine Diemert, globeandmail.com: Thanks Heather Bishop and Sean Quigley for sharing your story with The Globe and joining us today to answer questions from our readers about coping and caring for a child with a mental illness. I'll ask you the same question I've asked Darlene Wierski-Devoe. What is your greatest hope for Erynn as she goes through her life? Also, what is your greatest fear?
Heather Bishop and Sean Quigley: I think our greatest hope for Erynn is that she will be able to live independently, go to College, University, get a job and start her own family.
Our greatest fear is that she will succumb to those who believe she is "less than" because she has a mental illness and believe she is unable to pursue her dreams.
Alexandra Harkins from London: Thank you for sharing your stories in the article, 'Children of Darkness'. The difficulties that you encounter in trying to obtain help for your children are very concerning - especially some of the experiences you've had with schools.
Although I know of many teaching/support staff who listen and respond to families in caring ways, it might be helpful if you could offer a parent's 'wish list' to all of us who work with young children.
(Ms. Wierski-Devoe, I am spending time this afternoon reading your blog at raisingsociallyanxiouschildrenblog.com and have found many useful suggestions and links. But most of all, I appreciate your thoughts and insights as a loving, devoted parent. Thank you.)
Darlene Wierski-Devoe: I can't thank you enough for even asking that question because the fact that it is being raised as our "wish list" is in and of itself the first step.
I understand that the teachers are the professionals and are the ones that know about children and curriculum and I never wanted to step on anyone's toes but from our last three years of schooling (this year going on four) a few things have been made perfectly clear when it comes to success or failure.
My wish list:
1. To understand and accept the fact that Anxiety is a disease and it can be debilitating for children.
2. To never, ever, EVER tell a child that they will fail or that they can't do something. Any concerns should be addressed outside of the presence of the child. These wonderful children hold the weight of the world on their shoulders and when anything negative is said in front of them their world just crumbles. It makes them feel even worse about themselves.
3. To realize that goals for children with anxiety are in small steps e.g. walking in line without being first with the teacher or just smiling back at you or walking into school without crying.
4. It is so important that those working with these children have an open line of communication with the parent as in a communication book or access to email so if something has happened the previous night or in the morning both parties have warning.
5. Be patient. Things will come for these children it just takes a nurturing, safe environment and time.
Heather Bishop and Sean Quigley: We have been fortunate to have worked with some amazing principals, teachers and educational assistants at all three schools that Erynn has attended - all have been very caring.
That being said though, we don't feel like the School Boards do enough to educate their employees about mental illness and train them to work with our children. Nor do they always provide the tools necessary for our children to succeed - ie: quiet spaces where they can decompress, one-to-one assistance so teachers don't have to deal with our kids and 25 others, etc.
In addition, some of those with a little knowledge, choose to try and diagnose our children even though we already work with competent psychiatrists, treatment facilities and doctors. At a school meeting, a school board official, who had never met our daughter, told our psychiatrist that she didn't believe Erynn had bi-polar disorder - that should not be allowed to happen as it causes a great deal of stress for families and school staff.
In addition, there is a lack of communication and coordination between School Boards and mental health/social services agencies. Right now these groups (and Ministries) work as completely separate entities. What would be helpful, is if School Boards had a position attached to them, like a "Patient Advocate" who can help families navigate these confusing systems of care.
Taliba Ismeme from Halifax: There are many alternative treatments that are being proven to help children and adults with psychiatric conditions such as biofeedback/neurofeedback. These are often less invasive and don't include the same alleged risks for adverse reactions as drug therapies.
Are you receiving enough information from your doctors that enable you consider these options to your children as well?
I'm wondering if psychiatrists are providing parents and children with treatment options that are equally effective (biofeedback for example has research to back its effectiveness)?
Darlene Wierski-Devoe: It's funny you should mention about alternative therapies because I was going to blog about that this week.
I have not been involved with any biofeedback/nerofeedback. The only thing that was suggested by the Psychologist was that my parenting skills were questioned and that we in the future should look to drug therapy.
We refused the idea of giving Sydney medication, instead we went towards a more holistic approach. From a naturopath/holistic stand point this is where we've been; Sydney has unfortunately been the ungrateful recipient of a number of food allergies. One of which landed her on three weeks of Benadryl and missing the first two weeks of her JK year.
It's hard to tame anxiety when you're not in a routine for very long.
Sydney has spent the last three years getting "well". We are in contact right now with a wonderful naturopathic doctor who has helped us make such wonderful strides forward. I firmly believe that between our naturopath, our cognitive behavioural therapy that Sydney was involved with in JK and now ongoing support for the current team of professionals have all enabled Sydney to move forward.
Sydney is now on a number of supplements and minerals that are helping to detoxify her body as well as lessen the severity of the anxiety. Within the first two weeks of working with the naturopath she came to me crying and when I asked her what was wrong she replied, "I don't know". I nearly started to cry myself.
It was more of a response than we had ever gotten from her and it was the beginning of the road ahead.
Heather Bishop and Sean Quigley: We have investigated biofeedback as an option (and have a friend who works in this field outside the province). Unfortunately, it is not readily available and can be expensive if sought privately.
Our hope is that it will gain recognition and be more readily available to the next generation of children with mental illness should it be proven to have a positive effect. Right now, there are so few studies it is difficult to determine whether it is a reliable method of treatment.
We have however, sought other non-invasive, non-chemical treatments for our daughter's illness including social skills classes, meditation, reiki, etc. All of these have been effective and we believe that combined with medical treatment they have helped her to gain some sense of stability.
ChristineDiemert, globeandmail.com: Since we are in front of an online audience now, I'd like to ask Darlene to talk a bit about the blog. What have you learned and who have you met since starting your blog. (It's an excellent blog BTW.)
Darlene Wierski-Devoe: The blog was started at the beginning of this year when I was completely frustrated with the support and understanding of those around me particularly the school system. I was certain that there were other parents out there dealing with anxiety issues and I wanted to connect with them. I personally need to talk about what's going on with Sydney. I encourage feedback and opinions because I never know when something will work or help if I approach it differently. I think when you're dealing with such emotional highs and lows you need an outlet to discuss things. I am hoping that the blog can be just that and more. I have learned that anxiety touches so many people and renders it's ugly head in so many ways. I've had kids that are in their teens email me and professionals that too have anxiety issues and want to help in any way possible.
The most important thing I've learned is that this is just the beginning. We have days where the anxiety is at a low and you think to yourself, "Alright so what was I so worried about?". Next thing you know you're holding back tears because you see the struggles of your child and all you want to do is hold them.
I'm really hoping that support groups for parents can grow because there is so much strength is understanding and unconditional acceptance. Sometimes we need to cry, sometimes we need to laugh and sometimes we need to just listen. Hopefully the blog will help to facilitate all of those things. I just received an email this morning from a mom who had a child who walked to school without tears and she was so happy. I'm with her, something so simple for some is so difficult for others.
Laura Simpson from Vancouver: Thank you for taking the time to answer our questions. In your opinion, what are some of the biggest problems in the school system in terms of deal with children with special needs? What are some strengths? Do you have any advice for educators who may be reading this forum?
Darlene Wierski-Devoe: We've focused a lot about the weaknesses I'd like to change the tune to the strengths. Here are the things that I believe have made all the difference this school year:
At the beginning of the year we had a meeting with a number of professionals that are involved with Sydney. The principal, vice-principal, teacher, SERT, speech therapist, behavioural action team, the school boards child and youth counsellor as well as my husband and myself.
The first thing that we spoke about was our hopes for Sydney. We were so impressed by everyone's genuine desire to help. What we have to understand is that Sydney is fully aware of her surroundings perhaps even more than most children. She has a very sensitive nature and she will thrive is she feels safe. Once we told them our desires the teacher had a chance to speak. We were told that she used the washroom at school and it hadn't gotten back to me yet. I leaned over the table with tears in my eyes and repeated, "She used the bathroom?". She had only been in the school for 2 weeks and already she was using the facilities. To many this seems inconsequential but indeed it is an amazing step. Little steps are so important and cannot be dismissed.
Everyone involved is open to our opinion, the opinions of the parents, the ones that are with these children day in and day out and know them so well.
Flexibility is a key component for all parties involved. Nothing is set in stone and we all need to try whatever approach will work.
The school systems need to educate the staff further. Just because you've had an anxious child or selectively mute child or a child who has any mental health issue in the classroom doesn't mean you know how to deal with them all. It impressed me to know that a number of staff members have taken it upon themselves to take advantage of classes/forums dealing with different disorders. They want to know more, they hope to be better educators by learning more.
Heather Bishop and Sean Quigley: It is a pleasure to respond to questions about the educational system!
In general, we believe that educators want our children to be successful. Unfortunately, the educational, health care and social services departments do not always cooperate as fully as they should.
In addition, the educational system does not provide adequate training or funding to support teachers who have our children in their classrooms and schools where our children attend. Also, applications for funding are made in advance of the year in which funding is received. So, if your child is identified in say Grade 2, the school does not receive funding for extra services until Grade 3 - if you're lucky and the timing all works. This means that schools are dealing with children without the proper resources to help them for months or years. And that's if they get diagnosed quickly!
In addition, families are also under stress during this time due to the pressure being placed on the school - they are often called to come get children, have to rearrange work schedules and deal with many child care issues besides.
The biggest strength the system has - is its people! We have been fortunate to meet and work with a wide variety of caring individuals at all levels of education.
It is a shame that these individuals are not always recognized and can't always talk more openly about the issues facing students in their classrooms. So often, children are very understanding about their peers' differences - unfortunately, parents are not always so open. It would be wonderful if our schools could do more to educate parents within the school community about ALL KINDS of differences and challenges that students face. This would go a long way to ensuring our children's acceptance.
ImTheOneTellingYouHowItIs from Canada: Hi, and good on you for putting yourself out there to help others. I myself have Bi-Polar. I refuse to take anything touched by a pharmaceutical company or endorsed by the Government, yet I constantly wonder what normal is like. How have you found the treatments to be working??
Have there been numerous different ideas on the diagnosis and were drugs thrown at you throughout the whole process?? My main concern is that they are more inclined to push prescription drugs then to get to the real root of the problem.
I feel that Bi-Polar can be contained on its own with the mind and education. Do you fear that pumping your kids full of unhealthy prescription medicines isn't the right thing to do in the long run??
Heather Bishop and Sean Quigley: I question what you mean by "normal?" I guess we have always felt that it was not so important for our daughter to be "normal" (I mean really - what is that?") as that she be able to "live in the world." This is FAR more important to us. So, she needs to be able to clean up after herself, she needs to be able to get through a day without hitting someone, she needs to be able to know how to take care of herself - wash her hair, brush her teeth - what it doesn't mean is that she has to like everyone and she shouldn't expect everyne to like her. It also means that she has to take responsibility for her actions - good and bad - just as we do.
So, in answer to the other questions, if we thought she could do that without medication - we would fully support that but for now, medication really does help.
We were very fortunate, that at every step of the way, we were encouraged, by doctors and treatment facilities and agencies to question all methods of treatment that were proposed - especially medication.
At one time, we did take Erynn off of all her medication and it was a disaster! Do we ONLY rely on medication? NO! In fact, we have sought out other ways for her to learn to control her behaviour including social skills classes, meditation classes, reiki, some extracurriular activities, writing, reading and much more.
We believe that medication by itself is not enough - you really do have to treat the whole person and we have tried to look at as many other treatments as possible to provide her with all the options we can to keep her healthy and stable.
Susan Parker from Toronto: Unfortunately a diagnosis is not always possible, especially if the child/teenager is adopted with no medical history or will not cooperate with doctors or psychiatrists. Our son would rather be labelled bad than have a mental illness. At 18, he has not completed Gr. 9, is not able to get a job, has been arrested 4 times and over the years the police were called to either school, group home, our home at least 20 other times when he was not arrested. We have taken him to doctors, psychiatrists, social workers, etc. etc. We almost wish that he were still on probation because he is over 18 and there is no support for him.
A highly respected psychiatrist at CAMH with over 50 years experience has told us that he is confused by our son. I was not able to work through the worst of his behavior from age 8 to 15. It is no coincidence that my husband lost his job at the end after a particularly difficult 18 months with our son.
The article said the child kicked the door off the hinges. How about kicking through the wall of his bedroom and out into the room next door because he didn't want to go to bed or kicking the window out of our van because he was told he couldn't have a friend over after school.
There were several times when we took our son to Sick Kids Hospital after he raged for 5 hours and my husband couldn't hold on to him for any longer, only to be told that we should take him to our doctor and have him assessed which we had already done.
We do not know what to do to 'treat' 'handle' 'cope'?? with this. We are struggling financially, emotionally and socially. The parents at the school he and our daughter went to over a total of 12 years totally ostracized the whole family after our son fell apart in Grade 8.
Because we have been so determined to help him we have not given up on him, he now lives with us again, is not violent and is mostly cooperative. However, because he did not received treatment in the past how is he going to become a productive member of society?
Heather Bishop and Sean Quigley: Dear Susan - DON'T GIVE UP! The love you feel for your son is evident in your letter and our hearts go out to you! We encourage you to let your son know in every way you can that you love him no matter what - we know this goes a long way to helping our kids cope in their darkest hours.
Remember, that any diagnosis he receives does not belong to the doctors or counsellors or anyone else - it is yours to use and wear in order to help you ensure he receives the extra care he so desperately needs.
You may want to consider trying to pull toegther everyone who is currently working with your son and anyone who has worked with him in the past (including the police) to re-examine everything that has worked or not until now. Keep in mind that your family's greatest strength is each other and from that position of strength you can cope with the darkest and the brightest of times (we are living proof of that!). In the meantime, do not be afraid to seek help for yourself and your husband.
It really does "take a village" to raise our children and you both need to avail yourselves of the help that your caregivers may be able to provide.
Also, I can understand why he would rather be "bad" than mentally ill - it is our hope that by speaking out and making stories like our daughter's public - this stigma can be reduced and others will know, like Erynn, that her "brain just works differently!"
Darlene Wierski-Devoe: Your courage and determination and will to continue helping your son is what is going to help him become a productive member of society. Keep forging forward and utilize every source of support and resource available. I have only seen aggressive behaviour in Sydney a handful of times and I can't imagine how hard it has been for you. Find solace in those who understand and/or are willing to listen when you need to talk.
John D. from Canada: I'm looking for information on experience with Risperidone for treating Anxiety and OCD.
My son is 11 and has been on this medication for 2 years and we've recently added Clomipramine 2 months ago to help with tics. I've recently read about the results of a study where the SSRI Zoloft had been particularly beneficial to treat Anxiety with OCD.
Any thoughts on this change in course of treatment? As expected, my son was originally diagnosed as ADHD and we went to Straterra first instead of a stimulant. This did not work and eventually went to a stimulant (Ritalin) which seemed to be increasing the tic response as the dosage was increased. My son has always been on lower end doses of medications due to his sensitivity.
My question here is about the issue of changing direction in medications, particularly away from Resperidone to Zoloft.
Heather Bishop and Sean Quigley: Medication is such a tricky thing. There never seems to be just one opinion about any medication and you can find lots of articles and opinions to refute or recommend your course of action.
That being said, we have tried to keep a medication as long as it is working and we have also tried to change medications when our daughter is at her least stressed, ie: during the summer.
We can't speak to the specific change you mentioned, but I would encourage you to seek your doctor or psychiatrist's advice too and, ask them what their other patients' experiences have been.
We have always found that speaking to other parents about their experiences with medications has been useful and has also provided additional information about possible side effects.
Darlene Wierski-Devoe: We were told that one of the best options would be to put Sydney on medication but we chose not to. We understand that in some cases there may not be a choice but we placed our trust in trying a homeopathic route. I am not a medical expert by any means so I can't address your specific concern. I can only tell you that the tinctures and homeopathic supplements have by far helped to ease her symptoms and have given her some breathing space where she can work through her feelings and fears.
mary Mary from Toronto: What is your take on the services provided to youth that help diagnose and support them with mental illness? Do you think they are sufficient? If not, what else do you feel still needs to be done? Also, in terms of hospital stays, as they hit the transistion stage from youth to adult, would you feel comfortable with them staying in the adult wings of the psychiatric hospitals?
Heather Bishop and Sean Quigley: One of the biggest challenges facing families is actually getting INTO the system in order to be assessed and get a diagnosis of any kind. Mental illnesses are very complicated and can't be diagnosed after one visit. In our case, we filled out forms, our daughter's caregivers and school filled out forms (numerous times), we met with various professionals, our daughter met with professionals, we all met with professionals - it was a very long process. Sadly, while you are in the midst of the process there is very little support for your child or the school they attend and this is a HUGE issue.
In an ideal world, School Boards would have "floaters" - teachers, LSTs and educational assistants who were not assigned to a specific school but who could be sent to various schools to assist with children who are in the process of being diagnosed and identified. In london, we have a pre-school program called "ALL Kids Belong" that works with daycares and preschools in this way.
They work with the children, help parents find agencies to help them and also work with the daycares to provide alternate programming and tools to assist them in dealing with challenging children.
A program like this is the public school system, would be of benefit to children is transition and would also assist classroom teachers and enable them to devote more time to the "normals" in their classes. There also needs to be a much more unified approach in terms of the education, health and social services agencies working together to diagnose children and help families. Many times, you end up filling out the same forms for several agencies and this is redundant if they were all working together.
We would be VERY uncomfortable with our daughter spending time in an adult institution. We would be concerned about her maturity level and ability to relate and cope with the issues facing adults with mental illness - which could be quite different than hers. This was also a concern when she was hospitalized with teenagers and we were fortunate that the care facility understood our concerns and handled this very sensitively - she did not attend group sessions with the other girls for instance.
Darlene Wierski-Devoe: This question is a hard one because Sydney is still so young. I know that when I was looking for support I found a number of places that help youth and teens. To be honest I think we need to open the doors of mental illness; of which I hope this article has done.I think there needs to be more support out there for parents so they can help to aid in the well being of their children. Most times I act through instinct and it would be nice to have some strategies under my belt from experts.
I don't think I would want for Sydney to stay in the adult wings of the psychiatric hospital if it ever came to that at that age.
Shanan Spencer-Brown from Canada: Thank you so much for sharing your personal stories. You are helping to inform readers who don't understand the tremendous toll faced by families of children experiencing mental health problems and the widespread impact of this issue. I wonder if you can speak about the stigma associated with mental health problems. Is this something you have personally faced? What would you like to say to 'society' about how we can support families of children with mental illness?
Darlene Wierski-Devoe: I am in the process of forming a support group for parents not specifically for anxiety but any mental health issue. In talking to parents it has always amazed me as to how ashamed parents are about the prospects of their child's mental health problems.
So many people where interested in the support systems that I had discovered but would not come together as a group with strangers because their child was not "diagnosed." My philosophy is that if you are concerned with your child's behaviour and/or demeanour why would you not talk to others that are in the same boat.
There is still that stigma that we can't say she's got anxiety, she's just shy! When it impacts everything they do we need to support them and everyone around them. I am not ashamed to say that Sydney suffers from Social Anxiety Disorder because it is such a big part of her life right now. What I'd like to say to "society" about how we can support families and children? These issues are real, these children do not wake up in the morning wanting to be miserable, or mad or aggressive.
These children are all part of our society and need our help. Our fight for our daughter has been a very long one and only recently have we had the pleasure to feel like we are all working together for one cause not separately for our own agendas.
Heather Bishop and Sean Quigley: We have certainly faced stigma however, we have always tried to be very open with our daughter and others and we firmly believe that by not acknowledging mental illness, we help create stigma - that's why it's been important to us to speak out.
Having said that, we also recognize that not everyone feels that way and we respectfully encourage people to speak out in a way that they are comfortable.
As far as "society" is concerned, we believe that whether you recognize mental illness as a chemical imbalance or anything else - our children are different and need to be supported no matter what! In our experience, other children are prepared to accept our children's differences more readily than their parents in many cases!
I encourage parents to speak to each other and try and understand other children. Do not shy away from asking what is going on. I wish that we had spoken directly with more parents. At Erynn's first school, she did presentations to her class about her illness but I wish we had also coordinated sessions for parents to help them understand and also to encourage them to come to us and ask questions or voice concerns.
Heather Kamps from Toronto: Do you have an IEP in place with the schools to address specific classroom and learning issues? Have you been involved with Sick Kids in Toronto at all?
Heather Bishop and Sean Quigley: Yes, we have always had an IEP in place. We have found that Individual Education Plans are most effective when they are VERY specific.
Our daughter's IEP includes percentages so for instance, she "will respond to requests to begin working 50% of the time after 2 promptings." In essence, this means that the school understands that 50% of the time she will NOT respond after 2 promptings. As she has achieved success, these percentages and expectations have increased so that her IEP has always been a "living" document that follows her progress.
We should also point out that in the beginning, she was only expected to respond 25% of the time - so 75% of the time they knew it would not happen!
No, we have not worked with Sick Kids although we know others who have. Our daughter has received care primarily through the Child and Parent Resource Institute (CPRI) in London, ON.
Darlene Wierski-Devoe: We were told at the old school that there was a waiting list and it would all take time so no an IEP was never put in place. This year we are taking some time to access Sydney's skills and knowledge. She felt so threatened in her previous environment that she was unable to perform so to be honest we never knew where she stood. Since September she has been bringing home a tremendous amount of work some of which is marked with scores and others that are just marked for completion. Her first test we received was a 26/27 and we were overwhelmed. As it stands right now she may be a little below grade but we'll see.
We were involved with Sick Kids but we've moved and now we have a different agency that holds the same type of program. We're just getting set up for that next week.
Karen Delaney from London: Hi, my name is Karen Delaney. My little boy age 6 was admitted to LHSC psychiatric ward last week. They have diagnosed with a generalized anxiety disorder and he also has sensory issues. He has been on respiridone and now also is starting prozac. The rage issues can be very violent. They were occurring at least once a day and sometimes last for 3 or 4 hours. Some days we would have 4 -7 episodes of rage. I have worked with an organization for 2 years now and I feel like I am not receiving the help or answers that I need. If you have any suggestions on where to go please let me know.
Heather Bishop and Sean Quigley: Our hearts go out to you! We know from our own experience how painful it is to hospitalize your child - we also have experienced the rages that you describe and it is exhausting!
You mention that you have been working with one organization, you did not mention a doctor or psychiatrist however - you may wish to seek additional support from them.
You are your child's first and best advocate and if you are unhappy, you need to seek the best treatment possible.
We are more familiar with London (because we live there!) and so we would encourage you to contact CSCN (Community Services Coordination Network) in London to enquire about alternate services. In addition, you may wish to visit our website for other links and information. You can also e-mail further questions to us there.
Christine Diemert, globeandmail.com: We've gone past our time, so I'll close the discussion now. I'd like to thank Darlene Wierski-Devoe, Heather Bishop and Sean Quigley for joining us today and being so candid.
Heather Bishop and Sean Quigley: We'd like to thank The Globe and Mail for the opportunity to participate in this article and forum. It has been wonderful to speak to people and if anyone has further questions, they can reach us through our website
Thanks so much Christine - it's been a pleasure!
Heather and Sean
Darlene Wierski-Devoe: Our family would like to thank The Globe and Mail, Christine and all those involved in this series. I hope that with each email, each person reading the blog and each time we tackle a situation with our children we realize that we don't need to be alone. Thank you for questions and feedback as it reassures me that it's for everyone's good that I share Sydney's story.