Saturday, March 23, 2013
Here's my letter to my local MPP...I mentioned I'd post it...
So here it is, in all it's glory.... I am leaving out names, just to be fair... I realize it may be hard to follow, and I'm sorry about that. I am leaving it as is, just because I don't have the energy to change it right now. but feel free to ask questions, make positive suggestions in the comments section....
Thank you for speaking to me on the phone yesterday about my daughter. Just to recap, we were talking about the failure of the early intervention mental health system in Guelph to support my daughter, B, in receiving the help she needs in the evaluation, assessment, and treatment of her Sensory Processing Disorder. We started to look for intervention for B when she was less than 2 years old, as her behaviours and coping mechanisms did not seem to fit with the "norm" for her age. We started by calling the Growing Great Kids Program - run by public health - and had E assigned to us as our public health nurse. She made 2 visits and received 3 of my phone calls over an 18 month-ish period, but did not recommend or initiate any sort of screening or assessment for her, despite her witnessing a few extreme behaviours. She stated that B was Highly Spirited, and that made her intense, but she was "normal". At about 3 years old I started advocating for speech therapy for B, as at the time she had some language barriers for her age, as well as difficulties in pronouncing certain sounds in her mouth. We were referred, at my insistance, and the recommendation of E, to Wee talk, assessed after over 3 months of waiting, and sent home with a "home program" to help me teach her to do her "L" sound (something that wasn't an issue yet due to her age). Despite me insisting that she would not benefit from a home program, and despite E's recommendation to speech therapy with a therapist rather than at home, that was the assignment, and we tried to follow the program at home. As expected, this was unsuccessful, as her frustrations led her to rip up colouring and other "assignments", and otherwise react negatively to attempts to "train" her to pronounce a letter that she was not developmentally ready for. In this time we saw E again, and I had at least one very frustrated and desperate phone conversation - where E agreed that it seemed that B may have issues with Self-Regulation, but still, she didn't have an assessment done or scheduled. She discussed at this point the city's Early years mental health program, and put us on the waiting list for that. I asked if there were any programs/support for parents dealing with similar issues, and she recommended me waiting until B had been assessed at the early years mental health program, and then asking for support through B's worker. She insisted that it would be the fastest way for me to get the support I needed. Three months later we went to her follow up wee talk appointment, and explained her lack of progress and frustration with the program. We were then referred, by K at Wee Talk, to a speech therapist at St. Joe's, and waited 3 more months to see her. Within ONE visit with M at Wee Talk, it was determined by the speech therapist that B was in desperate need of Occupational Therapy, and M made the referral within 1 week. B was not yet 4 at this time. It was also determined that B's speech issues were not something that could be treated with speech therapy at this time, as the problem was the physical formation of her palate, which would not be corrected until she was much older, either naturally or with orthodontic/surgical assistance. We were then told by M that the waiting list for OT through Kidsability was very long, and should we want service sooner, we should pay for private OT assessment through a local private clinic here in Guelph.
Concurrently, we began assessment/treatment with early mental health program, seeing E. The written evaluation/assessment showed that she was medium/high risk in her behaviours, no discussion as to the root cause of these behaviours, and after 2 sessions spanning 3 weeks, we were told that we qualified for their services. We attended 4 sessions with E, where she focused on my interactions with B, and behavioural modification techniques (such as visual reminders of how to behave, games to play to help us express and recognize emotions). B found the activities fun, but they were not very beneficial to our situation, as we had already been implementing more effective techniques in our home for managing those behaviours. Seeing little benefit to this treatment, we finally decided to follow the advice of the speech therapist and seek private OT assessment, as it was now November 2012, and B was already 4 years old. We paid $200 to have an assessment done by N, the private OT. It was determined that there were several sensory impairments, as well as self-regulation issues as a result of Sensory Processing Disorder. A copy of that assessment can be provided at your request. It was determined that much more assessment was necessary to fully understand the depth of her issues, but as they saw that we were instinctively adept at providing a lot of the care she needed, and as they were aware of our financial limitations, they instead recommended a series of books related to sensory processing disorder, and advised us to create a "sensory diet" for her based on the books - this is a practice usually put into play by an Occupational Therapist, but they didn't offer us this service, as we were limited financially, and weren't sure if we could continue paying the $125 per hour to receive treatment and support from them. At this time, dealing with my daughters' disorder, a system that wasn't helping, and just needing support, I asked E at the early mental health clinic, over the phone, if there was any sort of parent support group - to help me cope with dealing with the day to day of our existence and B's disorder's impact on me and my family. E signed me up for her workshop "circle of security", which while interesting, did not in any way address my issues, or meet the needs I requested. I called her after the first week of this program to set up my next appointment with her and my daughter, and she told me that she didn't need to see us while I was doing the circle of security program, thereby ending ANY treatment that B was receiving. The circle of security group happened to have two sessions that fell over March Break, and we were away for those two weeks and the week before that, after a whole night awake with B, I had missed 3 sessions of the group. I recognized that I could not finish the group as I had missed too many, and asked about rescheduling the private sessions with her and B, mostly to maintain some continuity in care for her. At this point E stated that I had reached the max of her services, and it was time for me to put our sessions into practice, and she would call me in May (this after B had seen her all of FOUR TIMES).
While doing our homework and reading every book we were recommended by the OT, we were also weighing our options at this point (borrow more money for therapy or continue to wait for publicly funded OT program). At this point we got a call from the publicly funded OT, stating we had an appointment scheduled for that month (in January). We decided to go with that, and informed N, the private Occupational Therapist of that choice. Within a week of our coming appointment, the public OT service called to state that our assigned OT was no longer available to provide services to us, and we would have to wait until at least March for service. More waiting.
We FINALLY received our initial assessment last Thursday, March 14. B is now 4.5 years old. The OT that conducted the assessment was D - very wonderful woman, who B instantly bonded with. She conducted her assessment, offered some basic suggestions about making us a visual schedule for B to learn to follow, and offering to make the recommendation that B be followed by a pediatrician, but warned us that B was getting to the top end of the age in which they provide Occupational Therapy, since their restructuring (while we were waiting for our rescheduled appointment). That same evening, while we were away for the last weekend of March Break, we got a message on our phone stating that B did not qualify for Occupational therapy, due to her starting Senior Kindergarten in September (despite the program's mandate up to this point of early intervention to age SIX, and her only being 4.5 at this point). When I called D on our return from our weekend, we discussed the situation, and she agreed that B would definitely benefit from Occupational therapy, and the only reason that she did not qualify was her entering Senior kindergarten in September, and the further waiting list that she would have to be on to receive OT would put her past their cut-off period of June. We at this point signed up for their 2 day USWAY seminar (Understanding the Sensory World Around You), in the hopes of getting some sort of support still, through D. She agreed that the information provided would be information that we already knew, but we hoped to at least meet some other parents whose children were also affected by SPD, and maybe receive some support that way. She also gave me her supervisor's phone number, M-E, and told me that I could talk to her for further assistance. M-E reiterated that we did not meet their qualifications for receiving OT, because of her age, and then stated that she should have been referred for assessment back when she was 18 months old, and E the public health nurse, should have asked for the assessment/made the referral to Kidsability back 3 years previously. She agreed that we were one of the families that unfortunately "fell through the cracks" in the system.
I talked to you, at the M.P.P. office, at this point, and asked for my M.P.P.s support in helping my 4.5 year old girl get the therapy she needs to function to her best ability.
I offered to send you some links to help you understand the disorder she was diagnosed with. Here they are.
While all of this waiting and waiting and beaurocracy has gone on, my child, and my family, are still struggling. Bis not getting the support/therapy she needs. This is not right. We as a family followed all of the right avenues, started as early in our childs' life as possible to receive the support she needs. We are lucky to understand the system, and have tried to stay within it to the best of our ability. Please help me make it right for my little girl.