Some Days

Some days parenting a child with special needs is difficult. Most days I can handle the 4th time she has spilled her cup. Most days I can handle her high sensory needs as she crumbles her food and drops it on the floor. Most days I can handle her impulsiveness and distraction. Most days I can handle her jumping into dirt/rocks and mashing herself into anything messy. Most days I can handle her extreme emotions. Most days I can handle her overstimulation. Most days I can handle her limited sense of danger and the fact that she needs constant supervision. Most days I can handle having to hold her hand for stability. Most days I can handle teaching her to play appropriately with her toys. Most days I can cheer her on and encourage her ride her bike. Most days I can handle that all our savings have gone to pay for therapy for Elizabeth and our home renovations have halted.
But I also have days where I hate what prematurity has done to Elizabeth and our family. Some days I can't handle cleaning up another spill. Some days I tell Elizabeth that at almost 4 years old she should stop and look for cars and begrudge not being able to take my eyes off her for a second. Some days I snap at her for digging herself into dirt and pebbles. Some days I roll my eyes when she breaks down in tears over something that is not important. Some days I hate that I have to stay with her for a class to keep her safe and encourage her to pay attention. Some days I just want her to go off and play and not have to worry about if she playing appropriately. Some days I want things to be easier. Some days I hate myself for snapping at her because it is not her fault that she does these things. Some days it is my fault that she is getting into things because I have not worked enough on her sensory/proprioceptive activities causing her to seek input. Some days I look at our unfinished home and want to scream. On most days I look longingly at other parents and wonder how it must be to not have to worry about how your child walks, talks, hears and plays. Some days I hate myself for feeling these angry thoughts. Some days as her mother I feel despaired, Elizabeth knows these days because she usually asks 'Mama are you happy?', I of course tell her I am so happy because I have her. We are so blessed to have her but some days it is a lot for me to handle.

AWAKE

We started Elizabeth's trial of Artane to help with her dystonia. AS suggested by the Neurologist give at bedtime as it often causes drowsiness Ha. Elizabeth from 1:30 until the morning was awake. At first it was humorous as every couple of minutes we would hear 'Mum', "Mom', 'Momma', 'Mommy', Moooom' and then 'Mum'. I would go and try to settle her back down with tucking, her heating pad for her sore knee but she still was awake. In the middle of the night she explained 'mom my eyes are open they will not close'. Her going to the bathroom at 5:00 and falling in the toilet had us awake for the rest of the day. We are now giving her Artane in the afternoon and she is sleeping through the night again. I really need my sleep so I am thankful, I am not sure what we will do when she is to take the Artane 3 times a day, hopefully by then it will not keep her awake.

Recycling

We have found a good use for Elizabeth's old AFO's, her new water shoes. Elizabeth loves running through the water park but without her AFO's she is wobbly and gets knocked down easily. Elizabeth still startles and a blast of water causes her to startle and fall but with her AFO's on she is much more stable. We get a couple of odd stares but for me it is great I no longer have chase her through the water waiting to catch her if she falls. She can run around and I can stay dry, it is a fun time us both.

Playing

Social and play skills are still a concern for us so I am trying to spend time teaching Elizabeth how to play. Teaching appropriate play is difficult for me as I really do not know too much about appropriate play for a 4 year old. I have no difficulty working on Elizabeth's other PT, OT and speech goals as they are concrete; we have exercises, worksheets and tons of crafts to meet her goals. Teaching Elizabeth to play is just as important as her walking , speech, ability to print etc and it is something I often leave out. Elizabeth will go off on her own to play but I would not call it functional play (unless it is dinosaurs), in her play kitchen she will smash the dishes and make noise and her pet shop toys she will scatter around the house but it is not play that other children would join in on. After some research I found Lovaas' program and it encourages scripted play which hopefully can be faded over time. I am familiar with this program as it is used for children with Autism and for a short time I worked as a IBI therapist for children with Autism. Using his scripts we played restaurant and practiced serving each other meals. I began giving Elizabeth the key phrases and over time she is not needing prompting to stay and play appropriately. Of course Elizabeth would not be Elizabeth if she did not take time to be goofy.

Made my year

Elizabeth finished her 2 week performance arts camp where she attends pre-school. Her group the Kinder-Campers participated in the end of camp play 'Toy Story'. Elizabeth loved camp and did well 5 mornings week and because it was at her pre-school the staff already knew her. She came home with tons of crafts, enjoyed dancing with the older campers and learned new songs.

I will admit I was not looking forward to the end of camp play as watching all the dancers is another reminder of things that Elizabeth will be unable to do. I had prepared myself for a teary time and hid in the back to wallow.

What I wasn't prepared was for how amazing Elizabeth was on stage. Her group came out twice once as sheep (if I remembered to press record you be able to view that video as well). The second dance the children were dressed as Aliens which Elizabeth loved of course. She was stomping her feet, moving her arms and following the actions of the others. I loved every minute of wathcing her and unfortunately my videotaping does not do justice.

Next year I will get a better video camera and arrive early to get a good spot. Next year I will also bring a bouquet for my amazing dancing daughter.

Vacation

We once again enjoyed a wonderful week away at my parents trailer. The weather was somewhat cooperative considering this summers horrible weather. We spent lots of time at the beach, Elizabeth built castles, moats and just got dirty. Elizabeth still has her sensory needs and the sand is one of the best ways for her to get her 'fix' in. We have perfected the arrival and departure at the beach. Elizabeth is immersed as soon as she gets near the sand which is not the best for her AFO's, a quick grab and stripping of her shoes keep her AFO's relatively sand free. The departure involves rinsing her while holding her above the water (with a quick grab she will get into the mucky sand) and carrying her to the car as she will bury herself again if near the sand. This perfection requires 2 adults, fast reflexes and preparation.
Elizabeth has also developed a love for corn on the cob and now is eating it off the cob.
Of course it could not be a vacation without her best friend Owen coming to visit. Owen and Elizabeth were heard chatting in the bunk beds past their bedtime.