Many hugs to you. Yes the waiting lists are quite long and often if your child is not failure to thrive, very hard to get without an official diagnosis. Since you have the diagnosis, that is helpful. But even if you do get some help, it is typically very short-lived. We waited 18 mths for OT support and were granted 4 sessions, 5 at my very stern pushing. We are in Ontario also (GTA). There's no help in the schools here so unfortunately that is not an option
My son has sensory processing disorder and is a complete and utter challenge to feed regularly...and he's 7 now. He started reducing his foods at age 2 and they have never returned. He sometimes gets into a hyperventilating situation at the table, he cries, he won't eat if there's nothing there he feels safe with. He would rather not eat at all. He has severe food jags where a food is acceptable then all of a sudden it isn't any longer. It's easy to get really despondent over the situation and I fluctuate between being quite zen about it all to being so frustrated that he will never eat normally (by 'normally' I mean a balanced diet that does not regularly shift and change with food jags or does not create fear and anxiety when presented with food).
One thing I can recommend is the DOR - Division of Responsibility - method while you wait for help. The number one thing to do for these kids is reduce the pressure and anxiety around food. Kids who have sensory processing are often hypersensitive to input and overwhelmed by life in general, food is just another area this occurs. The mouth is a sacred place to them, a place to control, and so to try to force stuff into it rarely works and can, in fact, have the opposite effect.
I encourage you to read this website and, if you can, get the book from the library:
http://ellynsatterinstitute.org/So the Division of Responsibility is this:
The Division of Responsibility for toddlers through adolescents
The parent is responsible for what, when, where.
The child is responsible for how much and whether.
Fundamental to parents’ jobs is trusting children to determine how much and whether to eat from what parents provide. When parents do their jobs with feeding, children do their jobs with eating:
Parents’ feeding jobs:
Choose and prepare the food.
Provide regular meals and snacks.
Make eating times pleasant.
Step-by-step, show children by example how to behave at family mealtime.
Be considerate of children’s lack of food experience without catering to likes and dislikes.
Not let children have food or beverages (except for water) between meal and snack times.
Let children grow up to get bodies that are right for them.
The basic premise is family meals and that all food is neutral. You put the crunchy carbs in the same category as fresh fruit or meats or veg. They are all simply food. You make family meals that you would normally eat and would like your child exposed to. Exposure is key. But pressure is not. So the food is left in separate bowls for the child to select what they want on their plate. You give them a blank plate for the meal. The table should have at least 1 safe food item that the child will normally eat. You can rotate the safe foods served at meals if your child is ok with that. My child has food jags so a safe food one day is not always readily accepted the following day. It makes it trickier but not impossible. You find that you will create a roster of foods that your son can enjoy while being exposed to all the other foods you hope that he will one day eat. You don't cajole or convince or bribe him to eat any bites. You simply put the food on the table and make it available for him to try. Food is neutral, your reactions are neutral. There is no praise or high fives for eating. Food is there, it is his job to eat. You do your job by eating yours and modeling how it's done.
Now this method does not always result in a change in eating habits but what it does is two things 1) creates a relaxing atmosphere at the table which is important so that food can be enjoyed and consumed as a family and 2) create repeated exposure to the foods that your family will normally enjoy. Over time your child will learn how to eat family meals at a table, how to select foods and amounts, how to serve himself and, at his own pace, whether to try new things or not. Over time I find that they are willing to try stuff. Now that is not to say they will like it or swallow it or even eat it ever again, but the goal is not to increase the diet but to reduce anxiety so that an increased diet can potentially develop. It can rarely develop in a place of pressure of anxiety and although your child may eat because they feel threatened or rewarded, they will not develop a good relationship with food.
The other important factor is portion size. Portion sizes are often completely overstated and overserved, especially for kids. For a resistant eater, this can be the straw that breaks the camel's back. For my son, if he sees too much food on his plate, it's an instant shut down. Even a preferred food can overwhelm his brain if there is too much of it. So that is why the serving bowls are helpful. They learn to regulate and take what they need to feel sated. If there is a meal that cannot be served in bowls like that, then I would recommend that when you serve you serve a very small portion, take the portion you plan to serve and serve a quarter of that at first. Let your son know that there are seconds after a brief waiting period.
For the motor and oral skills issues, you need OT input. Is there any way to get some private OT while you wait? Not cheap, about $110/hr but even 1 or 2 sessions can actually help you a lot for stuff you can work on at home. They will show you things you can do with him to help the motor and oral sensory. There are some OTs that will come into the home as well. That can actually be helpful as sometimes kids do better in the clinics because they want to please...they are harder work at home
OT can help with eating as well, though we have worked with 3 different ones and almost all their methods involve pressure in some way. For some kids, like mine, this just does not fly. The more pressure, the more resistant and shut down he becomes. So I only caution you to tread carefully on that one, if you find a good OT and he/she is able to work on this without creating anxiety, then you should be good to go. It is very child dependent at that level.
PM me if you want any additional information. I'm not an OT or anything like that but we have been living this journey for 7 years now so I understand what you are going through with the food situation.
