2 weeks

Today marks the 2 week point of our little experiment! Today also marks the day she goes from half a pill to a full dose - oh boy! I can now say that I am not imagining the changes in our daughter. She is using far more words and is more interactive with us. When I say interactive, I mean of her own choice! We are not forcing the interaction, she is seeking it out. That is new. Other things that are new - she will say 'thank you' to me without prompting. When I enter her line of vision, she will say "hello Mummy", again without prompting. Last night, she blew my mind!

I tucked her into bed and left the room to get something. When I came back she was lying her bed reading her book. I had a basket of laundry in my hand and went to her closet to put her clothes away. When I came back out, she asked me "What are you doing?" I said, "I just got done putting your laundry away, now I am going to go and make a cup of tea" Then I realized that she had asked a question so I asked her "What are you doing" and she thought for a second and then said "I am going to go to sleep, goodnight" Oh it was a beautiful thing!

Other people have noticed things too. A neighbor came to the door on Sunday and Alex greeted her with a "Hello Miss Jo" which is something she would never have done before. Before, she would not even have acknowledged her existence.

So it is still early days, but I am feeling happy and optimistic right now. We shall see what happens now she is switching to a whole dose. I hope she can handle it!

Stay tuned

5 days!

It has been 5 days since she took her first pill. When I say 'took her first pill' I mean had her first pill shoved down her throat while she screamed, punched and basically fought with the strength of a thousand men! By day 3, it was impossible to get the half pill anywhere near her. After much trial and error, my husband finally hit on something that has worked thus far! Crushing the pill and sprinkling it on a thin layer of Marmite and then covering it with another thin layer - she licked that stuff up!

Apart from the actual pill taking, it has been hard for me to gauge any differences in her. I believe I see them, but I know I am more than a little susceptible to a placebo effect. I hear more words and see more interaction, but is it really there? Or is it just wishful thinking? I have not told any of her teachers that she is taking this medication so I am hoping they will be better able to detect a real difference in her.

So that is where we stand right now. She is at summer school right now and seems really happy to be attending. Probably not as happy as I am, but happy nonetheless!

Oh and if anybody has any idea on how to get an autistic child to take a pill, please send them my way!!

A New Adventure

It has been a while since I posted anything on this blog. I think I find it hard to write when there seems to be nothing super exciting going on. However, if I was to just wait for big stuff, I would be missing out on all the little tiny minutiae that makes up a life with Alexandra. She has so many fabulous little moments during the course of a day.

That being said, I do have some major news to write of and it has been some time in the making! A little backdrop:- more than 3 years ago, Alex went to have a hearing test at Portsmouth Naval Hospital in Virginia. They wanted to ensure that her hearing was ruled out before they gave a complete diagnosis of autism. They also needed to do this under sedation as they could gather a more accurate test that way. After repeated attempts of putting an IV into her failed, they asked permission to use ketamine which would calm her enough to allow the IV to be put in. We agreed, the test was done and after an hour or so, we got to take her home. The strangest thing happened the rest of that day. Alexandra was not autistic! For the rest of that day, the she was social, happy and talking like she had never done before. The fog of autism slowly returned but for 24 hours, we had a daughter that was not autistic. I reported this to her Developmental Pediatrician who was excited and told me she would research this and let me know any findings within her community! Years go by and we are now on the West coast. 6 weeks ago, this Doctor tracked us down and called me. It was more than 2 years since she had seen Alexandra but she had never forgotten. She called to tell me that she had finally found a study that matched the experience we had had with the ketamine. She sent me all the research findings, the medicine information and told me that I would have to get our new Developmental Pediatrician on board. This would be no mean feat as she errs on the side of caution when it comes to medications.

Long story short (or shorter than it could be) after much research of her own, our Doctor prescribed Alexandra with a drug called Namenda and she took her first pill yesterday. The study on this is amazing and it is so hard to not let myself get caught up in the possibilities. This has so much potential but I know I have to stay on an even keel and not get too ahead of myself. So that is where we are at right now. I am going to use this blog as a diary and a way to report anything that happens while she starts off on this adventure! I will post a link to the initial study later today but I need to go get the lovely lady ready for school - god bless summer school!

Stay tuned!

Mondays - All About Alex

I have been a bad blogger again, I know!

Monday is one of those days that is all about Alex. Every day is all about Alex and Owen, but Monday is a day that is scheduled finely. We had a very hard time finding therapists here in this area. When we finally got a speech therapist, the practice closed a month later so we were back to square one. Luckily we found a speech therapist again after about a 6 week lay off and we drive about 30 miles to get to her. Occupational Therapy however, was beyond elusive! It took over a year of being in this area to finally find one and once we found her, we were not letting go. Consequently, since Alex has changed schools and is enjoying a longer day, there is a very small window between her getting off her school bus and her OT appointment. It involves a lot of me driving on two wheels while she enjoys a snack in the back seat! I know, it is not an ideal scenario but we have to do what we have to do.

We are now awaiting a second appointment that will hopefully take place next month. That will bring it to two OT sessions a week - and it only took 3 years! Patience is hard to find sometimes but we have to remember that assets have yet to catch up with needs! Alex has been in a new School program for about 3 months now and it has made a difference like none I would have believed. She now goes five days a week and her days are longer. She has blossomed and grown in so many ways. I had suspected for some time that she could read but now I have seen it and others have too. She tends to hide her light under a bushel. This weekend we found out that she can write too. I happened upon a stash of words that were written on her craft paper. Red, Raft, Paper, Party, Dog, Cat and many other words, each on their own piece of paper and each perfectly printed! I just wonder how much more is still waiting to come forth. Then I wonder how many children are not lucky enough to have the therapists and teachers that my daughter has. She is wonderful, fabulous, smart, sweet and a pain in the butt, and thanks to the roll call of people who help her, we get to enjoy that!

Oh and her two bottom teeth fell out so she looks delightfully goofy too!

Drifting

I have noticed lately that I am the most erratic and sporadic blogger there is! I visit a few blogs on a regular/daily basis and I find myself irritated if they have not yet posted that day! Yet I feel no obligation to write for myself. I am aware that this blog serves mainly as an outlet for me but it would be nice to even allow myself that luxury on a more frequent basis!!

Where did I go in all of this?!

So all weekend has been about the bathroom exploits of one little girl named Alexandra. Many victories have been achieved with just one disappointment. She would not poop no matter what I tried. As I sat on the floor of the bathroom for what seemed like the 14th hour in a row, I suddenly realised how much my life has changed and a feeling of somewhat panic overcame me. Nothing too much but definitely an awakening of how I lost myself in the process of raising my children. I started to look around at blogs and stumbled across some wonderful examples of what I thought I would be when I grew up. I always imagined that if (and it was a big if) I had children, they would somehow just become mini versions of me. Well that is not exactly true. Both my daughter and my son are hip, cool children who are always well dressed and look as put together as can be. What changed was me. I was once a hip cool well dressed put together woman. Now I look down at the grey t-shirt with some athletic team emblazoned across the chest, and the rather frumpy jeans and I wonder what the hell? My face has not seen make up in god knows how long. My hair was last cut by my good self in a fit or rage at its complete inability to look fabulous on demand. How did this happen? How did I let myself go? And how did I let myself go this far? It cannot simply be having children. I see so many women with children looking just wonderful. So maybe it is having an autistic child that did it. But I don't think this can be the case either. Maybe I just hide behind that but it cannot be the reason. I see many mothers at the therapy waiting room who look as though more that 5 minutes has been put into themselves that day. So it is me. Great, something else to work on!

So I must lock away the "well I spend so much time taking Alex to her therapies" or the "Alex is very destructive and cleaning up the devastation takes so much of my time" or the always popular "I spend so much time chasing her around and making sure she is safe that I have no time for putting an effort into me". All these are true but they are just excuses. So I need to get busy and start looking after me a little. Maybe a nice haircut to begin - ooh what is in fashion these days? Should I go for the Jennifer Aniston look or is that already passe?! Oh, I guess some current cultural and style references may be in order!

Oh there is a God!

Well I made my resolution that this was the time to potty train my sweet little Alexandra. After writing it last night, I woke up feeling that it had to be now or never - my inner Elvis came a shinin' through! So after her morning at school, she came home full of smiles and joy. I had removed all diaper temptation from the house, lest I weaken and just opt for the quiet life. Her immediate request was for a diaper but I calmly told her that there were no more diapers and she would have to use the toilet from now on. This did not seem to bother her at first but as the afternoon progressed and her bladder ballooned, she became more agitated. She would go to the toilet, sit for a moment and then simply get up and leave. Still no actual elimination of bladder matter! After 6 hours of this, she became very mad and I almost buckled but I held firm and (look away faint of heart) I locked the bathroom door and left her to it. She was mad for about 5 minutes, but then I heard nothing for a while and I managed to look under the little space beneath the door (what do you do on a Friday evening?) and saw that the floor was soaked and so was she. She had finally peed! Granted it was all over the floor, but it was in the bathroom and I took that as my victory for the day. But there was more to come. After giving her enough positive reinforcement to sink a ship, she was given all kinds of love and the ice cream that she had been begging for all day. An hour later, it happened. She simply got up from the couch, went into the bathroom, put her little stool next to the toilet, put her seat on the toilet seat, climbed up and peed into the toilet - no muss, no fuss. I cannot explain how gut wrenchingly, overwhelmingly, unbelievably proud of her I was at that moment but it just made me feel awash in love and hope and all of those good things that make us warm and fuzzy inside. Yes today was a great day. Tomorrow? Who knows. Today - they cannot take it away!

one of our alps of autism has been climbed!