It is a full time job to manage Kate's therapies, interventions and diet. Moms and dads out there dealing with a child with a 'disability', am I right? Don't get me wrong, I love that Kate has a team. I love every single person on her team. I just wanted to point out that managing the team is a feat. Let me give you an example of a week in Kate's life. Keep in mind that she attends daycare all week as her father and I both work.
Monday: 5:00pm-6:00pm Therapy with A.
Tuesday: 8:45am Dr. S.
Wednesday: 8:45am Speech Therapy
Wednesday 3:00pm Occupational Therapy
Thursday 3:00pm Meeting at the Autism Resource Centre
Thursday 5:00pm Therapy with A.
This does not even include the floor time therapy Alex and I try to fit in as much as we can or her gymnastics which helps her gross motor skills develop. Could you handle all these appointments on top of your full time job? Kate can't either. She gets tired. All of these people are extremely accommodating and will try to make these appointments at times that are convenient for two working parents but ultimately this is what it looks like. So, it leaves Alex and I relying on the kindness of family to help out and also extremely understanding work places that make accommodations so that we can make these appointments. I will be the first to admit that Alex is doing the brunt of these appointments. As a teacher, it is difficult to step out for an hour and return. I would like to be at every single appointment. I am afraid I am missing key information but that is why we have the team. You may wonder why would we subject Kate to so many appointments. The research is clear, however, that immediate, early and intensive intervention is crucial to Kate's development. I know some children are not offered these amazing resources at all. We are so lucky to have them. She does love attending these therapy sessions. Many of them are based on the floor time model and consist of lots of imaginative play. Some of it we pay for ourselves and some of it is through the hospital. I really cannot say enough about how wonderful all her therapists, clinicians and doctors have been. I have been clear that the wait time, in this city, for implementing the early intervention is unacceptable but that is another post. We are turning our bonus room over the garage into a therapy room for Kate. Again, huge thanks to the team members for helping out. I will post pictures when it is done. She is going to love it and she is going thrive up there. Anyway, you can see we are pretty busy with appointments during the week. The next most time consuming thing is Kate's diet. I could write a whole post on the theories behind biomedical treatments for autism but I'll save that for another day. Essentially, Kate is on a Gluten Free/Casein Free diet, which means she does not eat wheat or dairy products and we have also eliminated, to the best of our ability, artificial dyes and ingredients. If you have a child with autism you know that their diet can already be extremely limited. I make Kate gluten free bread twice a week and we supplement her diet with essential vitamins, omega 3s, pro-biotics and a supplement we call 5M because I could not pronounce it, let alone spell it. I will not go into anymore detail than this but as you can see Kate's diet can keep us busy as well. Not to mention, that we have another child that needs as much love and support as her sister is receiving. So, if we seem distracted and forgetful or distant, it's because we are all those things right now. We are not feeling sorry for ourselves and I hope this does not sound like a complaint. Alex and I always like to call each other out if we catch the other complaining about a First World Pain. These are problems, that are not really problems. For example: "I make too much money to qualify for student loans" or "I got in the shower and forgot my towel." We are all guilty of making comments like this. Lately, our priorities have been different so when I say, "you are not even in our top three," I am not trying to be rude. I am just trying to point out that we have a lot going on. We all have to set priorities and figuring out what we are going to let bother us is important. Let the little things go. Concentrate on what matters, what is meaningful and what is helpful. You'll be happier, I promise.
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)