New funding for same old services?

Lately, "services" have been on my mind, through various different sources. It seems like the word itself has become a loaded one, linked to both parental relief (securing services) and parental despair (failing to receive needed services). Several days ago my local Toronto paper has published this article, announcing that the government is proposing a huge infusion of money for children on the ridiculous Ontario waiting lists (I've written about our waitlist sagas here and here) by eliminating the wait lists for direct funding. While according to the article the money would come within two years for Sophie, and as always I'm sceptical at best (my permanent state) it seems like a step in the right direction.

All the thinking about services and funding has made me reflect on the last two years, from the services angle. My husband and I often talk about how misleading the system is and how powerless the parents are made to feel. When Sophie received her diagnosis, in August of 2012, we were handed 2 giant folders. Each was stuffed with forms, brochures, handouts and places to call to "apply for services". We fumbled around (while processing the news that our child has a serious developmental disability, and caring for a newborn, and for 2 older children) and managed to fill out all allotted forms and secure all appointments and call the people we were told to call. We felt hopeful, productive, like we were on the ball. Then the responses started trickling in. We quickly realized that there was no imminent help coming from anywhere. Every agency we contacted added Sophie to a waiting list, expressing hope that she should be called up within 18 months. We also applied for funding (Special Services in the home) which we were told was very helpful, but unfortunately now was frozen, so again she would be put on the waiting list awaiting the "unfreezing" of the funds by the government. When would that happen? we asked. Lots of commiserating shrugs. While the new promise is that the funds will be allocated within two years for children and four years for adults, that's still a lot of time to fill.

However, in those two folders of not-very-helpful materials one list was sorely missing. Not one brochure or list gave any advice as to what to do to help the child while he/she is on the waiting list. This I think is a very disturbing ideology. Upon Sophie's diagnosis, when she was about 2 months post an illness and horrific regression, when she had a newborn brother in her life, the developmental pedeatrician insisted that the best thing to do is to put her in full time daycare IMMEDIATELY. We looked down at our two year old Sophie, cuddled in the nook of my arm and we couldn't justify how putting her in full time daycare now was really the best thing to do. I have cared for two older, well-adjusted children in the home. Why was it automatically assumed that I couldn't care for my autistic child and make her thrive? Yet the assumption was there, less than subtly stated.

I did what I always do when faced with a problem- I gathered all possible information, disqualifying ones that didn't make sense to me or conflicted with my values immediately. It is true, I never cared for an autistic child. All the agencies or service providers made it seem like it is beyond parental ability and thus the desperate cry for services. I decided to find out what she is really missing out on while on the waiting list and create it for her at home. So I made her a sensory diet in our apartment. I took her to playgroups, parks and rec programs and playgrounds in our community (we were out doing something every day, baby in tow). When I learned about PECS I made her a binder and labels for everything in our home. I never cried "give me services!" Instead, I asked for information. What can I do to help her? How do I do this? Where can I find this? I found out quickly that overworked, underfunded agencies can't provide you with services immediately, but all were willing to answer my questions and share information. And I took it from there. I talked to anybody who would listen about Sophie, gathering little morsels of knowledge and compiling them into a method.

When I started blogging, I read stories of parents ahead of us on the journey. As a parent of a newly-diagnosed toddler, I was just entering this world. Reading other stories, especially from parents who also took matters into their own hands was empowering. Realizing it is up to me to help Sophie, that yes, I can get some support here and there, but really I will have to do the bulk of the work myself was a turning point. Of course, Sophie then started a half-day specialized preschool which she was waiting a year for. But still, I didn't stop researching and reading what else I could do. I decided to go all out for communication, moving beyond PECS and into a complex communication app. Did I get indulgent smiles regarding Sophie's "level of readiness"? Probably. Did I start off completely on my own to prove that she can do it? Yup. Unfortunately in this system, nobody would believe that a 3.5 year old as "severe" as Sophie is capable of handling an app of that capacity. Did I ask anybody what they thought? Nah. I know my Soaps. Since I was her primary "therapist" for the past two years, I knew her inside and out and I knew what she was capable of. Would I be able to know her so well if she were in a full time daycare and doing after-hours therapy? I am not sure. I'd probably read the progress reports from the "experts" and take them at face value.

As our Facebook followers know, we had a successful meeting with an AAC consulting agency, which upon seeing Sophie clearly capable of using the app ("huge potential" was their assessment) will now give me a 12-session block of support in my home to work with me and Sophie on the communication goals we set on Friday. Their involvement will also be a huge asset in future school board battles (I'm nothing if not a realist) in regards to Sophie's use of the ipad at school. The name of their agency backing us up will mean much more than just me saying what Sophie can do. They can also send someone to provide teacher training and be an AAC liason between me and the school board. But- would Sophie have all this if I didn't get her part of the way myself, working on the app daily so she could strut her stuff at our meeting? Certainly not. Her competence sadly is not presumed, it needs to be proven.

Now, I am not suggesting at all that we withdraw services from families! I am just proposing that we empower the families while supporting the child. Perhaps a brochure listing community programs the parents can do with their child can be included in the "diagnosis package". In our city there are early years centres, parks and rec programs (including swimming), playgroups, toddler gyms, etc etc- most are free or next to free and none (that I've seen) have wait lists. The only reason I knew about their existence was because I took advantage of them with my older kids- none of them were offered to me as places to take Sophie to work on socialization, exercise, sensory therapy and the like.

Another thing we could offer parents is not just "OT sessions" but OT training. While working with the child get the parents, even the siblings involved. Use everyday-objects to engage and provide sensory therapy at home. Same with communication. Offer AAC as soon as the child is identified with a speech delay. I discovered PECS through my own research. When I asked a therapist about it, she expressed doubt whether Sophie was ready (she was). Better yet offer an AAC app for parents (this is where the extra billions in funding could come in handy). Anybody who can use PECS (which is mostly everyone) can use an app. Train the parents in its use- make the parent the leader of the child's team.

Why am I insisting the parents be central members of the therapy process? Therapy without parental participation is akin to wealthy countries "helping" poorer ones by invading them and taking over their government. The poor country becomes dependant on being managed. Since it never had to run its own affairs when it does manage to reclaim its independence, it falls apart. This method fails over and over. If parents put all their trust for their child's success into the hands of a third party, should they lose those services (because of cutbacks, aging out, etc) they are lost- because they were told since the beginning that they need "experts" to manage their child. They don't even know where to begin.

This I believe is the primary reason for the "caregiver burnout" that figures so strongly in the media. On one hand you have the tragedy model of autism. Parents are offered condolences upon receiving a diagnosis for their child and advised to find a placement for maximum hours of the day. They are not given any counselling/training/daily living tips in the early years. Nobody attempts to see things from the child's perspective or dare I say help the parents accept that they are different. Instead of working with the child's strengths and trying to take them to the next level, parents instead are urged to focus on the child's "deficits" to try to bring them as close as possible to "normal level" (the basics of ABA therapy). Needless to say, this often triggers tantrums, meltdowns and aggression which is then blamed on autism (by parents and "experts" alike) and which in turn makes parents feel they need even more services to help them cope with this child, which is getting increasingly out of control.

So in a nutshell - yes, services are important. Putting more money into helping those with developmental disabilities lead more meaningful lives is very important. Putting direct funding into the hands of families is definitely a step in the right direction. Shifting our society's perspective about autistic people and their needs is critical. Because, if the new funds are just used to provide intensive ABA therapy for more hours to more children, and not focusing on the family as a whole, not emphasizing communication for everyone, and not offering supports based on presuming competence and acceptance of the different autistic neurology- instead of perpetuating the deficits model- well, I predict that the new funding while well-intentioned will not achieve the desired effect.

Believe they can and they will



The many facets of a milestone

As parents of special-needs' children the idea of progress (or lack thereof) is always on our minds. Initially it might be watching our children fail to meet typical milestones, still hoping they will catch up. Then after it becomes obvious they are not catching up it becomes a desperate search for any signs of forward movement, no matter how small. While parents of typical children might boast about trophies and academic achievements, we tend to rejoice at each word said, any emerging sign of self-care or independence or a friend made.

Social media has given us the means to brag about and celebrate our children's achievements because we all get how hard they were worked for and anticipated. As members of the special needs' community, we all get the pride and happiness about everything our child is able to do, because by now we don't take anything for granted. While for some that might be sad, for me it was a lesson in perspective and humility. As a parent of two older, typically-developing children I never gave some milestones a second thought. While of course we celebrated "big milestones" such as walking, first words, potty training, so many seemingly trivial "firsts" have escaped my mind. I don't remember when my oldest son started eating with a spoon, or when he started putting his socks on. Or when my daughter was first able to draw a happy face or started caring for baby dolls. It wasn't even in my mind that it could NOT happen, so I didn't really notice when it did.

I think that's normal really. If we kept track of every single thing our children were able to do, our minds would explode. With our special needs children, it is reversed. The list of the things they can't do is often larger than the list of things they can. If we kept a running list of all the "can'ts" then our minds would explode. So we find the "cans" and we focus on those. I don't think I have ever been as keen in observing nuances of development and behaviour as I am now with Sophie.

I so often read parents' reports of an annual check-up and being crushed when the doctor pulled out the "age-appropriate" chart and started running down the list, reminding the parent (as if they needed reminding!) of how far the child diverged from his or her peers. It happens in doctors' offices and during many meetings for various services. I get that an overview of a child's development is necessary, especially for supportive services. But in most of these situations, the person already has a copy of the child's diagnosis and delays. Especially a paediatrician. I think it should be a standard practice to review the patient's most recent developmental report (let's say which placed the four year-old at roughly an 18 month old's level of development) and then proceed with a 2 year old's milestone chart to see how many accomplishments the child achieved. Wouldn't that feel much better for the parent? We all want to brag about our children a bit. The age outlined on the title means much less than being able to say "yes she can do that!" for at least some of the things.

On that note, Sophie has been making slow and steady progress since her diagnosis. There is no chart for Sophie's kind of progress, at least none that I've seen. How do you measure that she's falling much less and walking more steadily? That she can almost break into a run, although not quite yet? That she's getting much better on the stairs? Or behaviourally is there a chart for "somewhat longer attention span?" Seeming to understand and follow directions better? Showing interest in her surroundings? Attempting to interact with more people by offering shy smiles and longer gazes? Because she can and does all of the above. And there's of course her emerging communication (via AAC) She requests "watch Thomas" with proficiency (usually the precise engine she requests is Jack or Spencer). She picks snacks from the food menu. And just this morning, for the first time ever she directly answered me (I "spoke" through her app "need bath", to which she promptly responded "no"). There's no chart for that either, and yet it made my day.

Weaning off stroller- another milestone

Being a special needs parent is hard in this competitive world, full of charts and progress reports and measurable milestones. And yet, I feel lucky to have found this community, where nothing is taken for granted and every achievement is celebrated. When I post Sophie's little tidbits of progress and see all the "likes" and warm comments, I don't take that for granted either. I always try to reciprocate in the same manner and there are so many little (and not so little) special kiddos I'm rooting for these days. So thanks y'all. I'll keep bragging about my Soaps until you're all sick of me ;)



Ido in Autismland, and Sophie too!

It's been too long since I've written here. Facebook has kept most of my readers up to date, but i want to keep this space current as well. As Sophie is growing, and our perspectives are shifting (such a teaching journey, this is), we are not only increasingly at peace with Sophie's neurology, but learning so much from her about ourselves and perhaps life in general. I read a book recently which I have been reflecting on. As you can see by the title of this post, the book was "Ido in Autismland". It is a journal-like memoir of a nonverbal autistic boy, which he wrote when he was between the ages of 12 and 15.

I find reading memoirs of autistic people, especially ones who use alternative means of communication to be enlightening. Obviously at this point I can't know for sure what Sophie is thinking, but understanding how her brain processes information is very useful in being able to relate to her. Observing her myself, I have formed some theories already and reading ido's memoir confirmed some of them.

I know that in the general autism community it is a somewhat controversial topic that nonverbal people are able to communicate with intellect and deep insight into their situation. At best, people dismiss those that do as exception to the norm, at worst as straight-out fakes, manipulated by idealistic parents. However, with the current accessibility to video technology, more impossible-to-dispute videos are becoming propagated, including that of Ido himself. But I'm not here to "prove" whether that is plausible, realistic or even common. I trust all my readers can form their own opinions, I am just sharing my own feelings.

Reading this blog you know that communication is my number one goal for Sophie. Now whether she remains at the level she is now of "watch Jack watch Spencer watch Arthur" and occasionally "juice box" or is able to eloquently express poetic reflections on the human condition on par with Emma, that remains to be seen. I have a feeling though that she will acquire a rather impressive vocabulary because I see that mischevious twinkle in her eye when the app is opened. She really likes communication and I bet has loads to say!

Anyway, back to Ido. The first thing I noticed about the book is that the tone is genuinely that of a young boy. In the beginning he was quite bitter and it showed through the sarcastic asides. Of course one can hardly blame him for feeling resentful, as he was not only without a means of communicating for the first seven years of his life, but was also often discussed in his presence as if wasn't there and in not at all accurate terms (he heard himself be referred to as not comprehending, unable to perform and failing to make progress). I'd guess we would all be just a tad bitter. However, in a precociously mature fashion,he frequently reflected on those feelings and aspired to move past them or see them in context. There was a lot of grace and forgiveness for everyone whose intentions were good, if misinformed.

When Ido described how difficult it was (is) to make his body do what he wants it to do because of oral and body apraxia, it made me think of Sophie. I know that she has this problem too. Actually I often say that her biggest problems are motor planning and spatial awareness, along with initiative. Ido's insights on those topics were invaluable. Like this quote (Body Apraxia, December, 2008):

I understand everything but sometimes my feet interfere with my thoughts. It's like apraxia in my body. I want to say "no". My mouth says "yes". I want to go to my parents' room. My feet go to my room. This is a terrible problem because then people assume I don't understand basic information. It has happened many times over the years.

For me, it's not hard to see that just because Sophie can't carry out a seemingly simple instruction, it doesn't necessarily mean that she doesn't understand it, or worse yet, that she is "defiant" or "in her own world". I know her brain filters out information in a different way than mine. She always finds little ways to show us that she is in fact "here" with us. But Ido was drilled over and over in ABA trials which only underscored all the ways his body was failing him, by making him point to objects, pick up objects, manipulate cards, and so forth. Add in stress and it was physically impossible for him to do these tasks and crushing to his self-esteem. He said at one point he began to lose hope.

Of course for many neurotypicals (or people without this level of disability) it might seem incredulous- if he was intelligent and self-aware, if he could read, why didn't he signal sooner? Why didn't he yell, grunt, point, write, type, ANYTHING, even just "I am here-help!" I think that is where the limit of our own neurology comes in. We cannot imagine a brain so different than our own, that everything that we take as "fact" and "common sense" in fact is not. I suspect we will never really understand (short of acquiring some form of brain injury) what its like to process thought, movement and sensations in a way like Ido does (or perhaps Sophie does too). Some things he had to say about that:

I know my thoughts are getting lost on the way to my mouth (Apraxia misunderstood, December 2008)

I don't know why initiating is so hard (...) If someone tells me to, I'm able to react; otherwise I'm stuck in my stupor (Initiation Disorder February 2009)

If I have my eyes closed I don't know where my hands are (Proprioception, march 2009)

It's like my senses mix together (...) I see qualities in people like color. (...) I also taste objects (...) their taste is as obvious to me as their appearance. (..) if I hear notes in music I see each note visually. (Mixed senses, February 2009).

I don't want to quote anymore from the book before I give it all away. I can't recommend it enough, and I think it's a very worthwhile read, especially for parents or educators of nonverbal, severely autistic children. Every little chapter gave me something to ponder and reflect upon. Ido also runs a blog which you can find here. These days I am grateful that I do have access to so much varied reading material to educate me, although Sophie does a pretty good job of that herself - she amazes us everyday.


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