Friday, January 30, 2009

Speech Therapy

Another day of Speech Therapy today. We left the house at 9:20 to get to our 10:30 appointment (taking the bus turns a 30 minute speech therapy appointment into a 2 ½ hour trek across our city!). Esme did so well waiting for the bus today – no crying or running away at all. While we waited, we practiced saying farm animal names. So far, Ezzy can say: horse, cow, chicken, duck, dog, cat, mouse and owl. Her pronunciation and prosody (the stress and intonation of her words) are far from where we would like them to be, but the fact that she tries to repeat these words is huge!

When we got to the office, we had a 30 minute wait until her appointment. The waiting room is filled with toys, so Esme sat down with the school bus and filled it up with Little People. I read two year old Reader’s Digests. After a few minutes, Ezzy came up to me with a stuffed dog and pushed it onto my lap. She started crying and wildly waving her arms around, contorting them in odd positions. She does this when she wants something but has no words to tell me what it is. Luckily I speak fluent “Esme”, so I knew that she wanted the stuffed dogs clothes to come off (it was wearing a baseball uniform. Of course). If there is one thing Esme cannot stand, its stuffed animals (and some dolls) wearing clothes.

When it was our turn to go in, Esme started freaking out, screaming “Bear, bear!” (We had left the dog out in the waiting room and she wanted it). She was also tired after waking up at 6:30 am! Once she settled down, she started working with the farm animal magnet board. The speech therapist would hold out a magnet and Esme would have to say the name of the animal. She tried her best to avoid having to say the names (despite our practice session while waiting for the bus!), but the lure of those little magnets won out in the end and she named all of them. Her favourite was the bee! When she saw the bee magnet she laughed and yelled out “Bee! Bee!” without any prompting at all. The next activity was following the direction “Get ______ “ (eg. Get Bee). Esme has so much trouble with this. Even though she knows what the bee magnet looks like, she cannot / does not follow the direction. She needed some hand-over-hand help, but after a while she followed a few of the directions. The problem is that she would rather get the magnet she wants to get, and really she couldn't care less if the Speech Therapist wants her to “Get Bee”. She wants to Get Cow.

All in all, it was a good session. Our speech therapist says that she is amazed at how far Esme has come in only a few weeks. She works so hard, at therapy, at the therapy we do at home, and just in her day–to–day activities. It’s not easy for her, but she keeps on trying!

Monday, January 26, 2009

Positively Autistic

I watched this video this morning...

Positively Autistic

I think this is a wonderful video, showing that autism is not a tragedy, that our children are not ruined or doomed to live an isolated, sad life.
I guess I differ from the mother in the video a bit, because I am treating Esme's autism. I am trying to help Esme become more typical through therapy, diet and biomedical treatment. And yes, I do have some mixed feelings about it. I want her to be herself, and love herself, and to know that there is nothing wrong with her. At the same time, I want her to be able to communicate, and get along in the world, and hold down a job (a job she loves, not just the only job she can do), and to enjoy the world around her. While I say we are trying to 'recover' her from autism, what we really mean is that we want to help her brain and body work better than they do.
I believe that Esme was born with autism, but something happened in her second year that caused her body and brain to spiral out of control. We want to get her back to a state of health, and help her catch up with the developmental things she has missed. I do not believe that Esme will ever be non-autistic, but what we want is for her autism to be a gift, not a detriment.
It's a scary thought to me to think of a world where we have gotten 'rid' of the autism gene, or the gene that predisposes people to developing autsim in any form. Certainly it would be wonderful to have treatments for children and adults who are severely affected, and these treatments are most definetly needed. But imagine a world without autism... who would be writing computer code, solving mind-boggiling math equations, figuring out physics conundrums, writing beautiful music... a world with no differences would be a boring (and scary) world indeed.

Ezzy's Pappy

We will miss you, Pappy.

Friday, January 16, 2009

Speech therapy

Esme did so well at speech therapy today. It amazes me how quickly she can adapt - her first session was spent fighting, avoiding, crying and trying to escape! This time, with only one session under her belt, she was trying to follow directions, attempting some words and really attending to the toys on the table. What a change from the first session! Even her therapist was surprised that she is adapting so quickly to the demands of therapy.
Don't get me wrong, she still complained, whined, threw herself on the floor a couple of times... but when it came down to it, she did the work and tried her very best to do what was needed.
Way to go, Esme!

Thursday, January 15, 2009

Appointments Galore!

Add another 2 specialists to our roster! We made an appointment with the psychologist to do the diagnostic test for Esme. Only a month wait - that is so much better than the 18 month wait we have been looking at. We do have to pay for it, and it isn't a small amount, but it will get us what we need - a formal diagnosis so we can start receiving the services Esme needs. February 20th is our first appointment, but she will see us 2 or 3 more times after that before we get our results. It is a fairly in depth diagnostic tool.
We also are in the process of booking an appointment with a DAN! doctor for biomedical treatment. He is about an hour or so away, so it will be a challenge to get there for treatments, but we will make it work. That appointment should be in March or April. I will find out for sure tomorrow.
We are still waiting to make our appointment with the occupational therapist, though I don't think we will get in to that therapy until the summer or fall.
Esme currently attends speech therapy once a week and will start more in the summer or fall.
Esme's dance card will be pretty full for the next little while. We do get out to playgroups now and then, and I babysit a few times a week, so she does have some friends to spend her free time with.
This week we went to a large playgroup with some friends. It was so heartbreaking to see what a difficult time Esme has in a big group, and how far behind she is with her language, play and social skills. I know she will improve with time, but I hate that this has to be so hard for her, when it comes so easy to most other children.
A lot of the time I feel so frustrated, it just doesn't seem fair that we have to be dealing with all of these specialists and challenges when we just want to be enjoying our daughter. But then she will ask to cuddle or give me a kiss and I count my blessings.

Monday, January 12, 2009

A little about Ez

Esme was a great baby - she cried all the time, slept very little and needed to be held 24 hours a day... all that great baby stuff! She hit all her milestones right on time - she sat up at 5 months, walked at 11 months, and said her first words before her first birthday. She was a happy, healthy girl who loved to look at books, watch movies and play with her daddy! She was a little bit distant at times, but we just figured she wasn't one of these jolly babies who laugh at everything and anything.

When she was around a year old, things started to change. I started a home daycare and Esme began getting sick all the time. She ran very high fevers almost daily for months and was very unhappy. She would sometimes have seizures when the fevers got very high, and Cameron and I spent more than one evening at the emergency room with our little one. Finally spring came and the illnesses stopped. We breathed a sigh of relief. Esme was feeling good and was doing great. She was a little under a year and a half and had 18 - 20 words, though some of them were in Esme's "special language', she was a great communicator when she wanted to be.

When she hit 18 months she suddenly lost all but one or two of her words. She became very withdrawn, did not respond to her name and made very little eye contact. Needless to say, we were very concerned and booked an appointment with our doctor and with WeeTalk, a speech and language agency where we live. Since then we have been to all kinds of specialists. While we are still waiting for an official diagnosis (waiting lists for a diagnosis are 12 - 18 months long), her doctors and specialists agree that Esme has autism or ASD (autism spectrum disorder). We should get our diagnosis in the spring.

Until then, Esme attends speech therapy once / week. We are on the waiting list for Occupational Therapy and additional speech therapy. Once we have a diagnosis, other therapies will become available to us. While we wait for a diagnosis, we have also started some biomedical treatments and some ABA therapy at home (I was an ABA instructor therapist before I had Esme).

Esme is now 27 months old and is already making some gains. She is much less withdrawn these days, and makes pretty good eye contact - especially with Cameron and I. She has learned a few new words and signs, and is beginning to learn to use them to ask for things. She is learning to point and to follow a simple direction - though she fights us at every request! She is very strong-willed and figures out how to do anything she's put her mind to.

Esme is loved by so many people. This blog is to keep everyone updated about Esme's progress and to keep a record of Esme's story as she recovers from autism.