As my good friend told me, there will be ups and downs, just like the waves in the ocean. She's right. This friends life isn't all that different from my own. She, too has a child with a disability. She, too has one parent who works and one who stays at home. She, too knows how emotional this all can be. Our only differences are that her beautiful little boy has physical differences where as Wesley has behavioral differences. She works outside of the home while her husband takes care of their boys.
So, I just came from a really big wave that sent me really deep this time. I know there will be more, but I also know that the upswing isn't far away and I just need to look around me for the people who are trying to pull me up.
I have a lot of catching up to do! Last Monday I had a feeding and swallowing specialist come and meet with Wesley and myself. I've been trying to get someone for months to help me figure out his food issues and how to work around them. This is where the quick drop in the wave started. The specialist gave me an abundance of ideas to work with Wesley, but she mentioned how it would be easier if I did them alone, without Casey. I'm not sure if she understands that these two boys are attached at my hip with crazy glue. They don't come off. Not to mention that Wesley is a strong willed child. When he doesn't want to do something, he flies off the handle. That leaves me to not only deal with him while he's melting down, but to pick up the pieces when the tantrum is all over. Day after day after day of this can really take it's toll on someones emotional well being as well as psychological well being. We started yesterday using shredded carrot. He does an action (holding, smelling, kissing, tasting) 5 times for a count of 5. Each time, he gets a goldfish cracker. Once he completes two rounds, he gets to play with a special toy he's been jonesing for since he found it in my closet. I was saving said toy for his birthday.
Still waiting for school to start. As luck would have it, they decided to hold the Open House the day before school starts and that's Wes' follow up with the GI doctor. I'm going to sneak him in during the morning Open House for the A.M. preschool class. I still don't know who is para-professional will be. I'm drafting an email for the preschool coordinator because I want to know before school starts, not when it starts. I don't think these people know who they are dealing with. The boys and I have been taking walks over to the new school to play on the playground. I had a talk with Wesley a few times about this being his new school, but his same friends would be there with some new friends. All of his teachers will be there too. I'm hoping he understands and this will make the transition a bit easier. I'm debating whether it's a good idea to take him the first day or to let the bus take him and start the routine off right from the start. I really want to take him, but I know there are many changes for him already.
I'm proud to say that Casey has learned the art of swimming 2 year old style. I bought these Speedo swimming suits with built in floaters. We were invited over to Wes' para-pro's house to swim. Casey has become more and more comfortable in the water and this time, he jumped in and swam. It was an unconventional position but it worked for him. He was vertical rather then horizontal and his tiny little legs were kicking a mile a minute. Gradually, I had less and less grip on him, until I was just following him closely behind and he was swimming on his own. I'm so proud of him! His verbal skills are increasing daily. It amazes me that I can carry on a conversation with him and he responds. He's a pro at the art of manipulation at the tender age of 2. That's my boy!
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2 comments:
Glad you're feeling better. I spent last in a hospital bed with Matthew doing a 24 hour EEG...that was exhausting and NOT fun. Let me know how the food "training" goes...I've been trying to get M to at least touch fruits & veggies. I guess the next step is smelling/kissing them - but he puts up such a fight!
Jess, Once again you amaze me with your will. The process of the carrots definately needs the type of dedication that you are always willing to give. I am not sure where you get your drive to help your children but it is truely inspiring. I think that brining Wes and Casey to the school is an awesome idea and I hope you reap its benefits. I am not sure how you keep track of everything you do, or where you find the energy. You are an amazing mother and I look up to you. I think I will come up with a super mom hero name for you! I tell Chase and Carter that Im Mighty Mom and I sing the theme song to mighty mouse but I say mighty mom instead. We all get a kick out of it!
Ride the waves my friend!
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