Skip to main content

Posts

Showing posts from April, 2015

Juggling cats

I feel like I'm juggling cats right now. Well, I suppose I can't really say that because I've never actually juggled cats so I don't know for SURE that this is what it feels like, but ugh, it's got to be close to it. So much to do, and so little time to do it all! I've hit my end-of-the-school-year wall about 3 weeks early this year and we are officially to the drag our butts across the finish line phase. Throw in the most awful allergy season in the entire 13.5 years I've lived in this state and a few germs and we're just a hot mess around here. I have a bunch of projects with deadlines all of a sudden and our poor respite provider keeps getting sick and having to cancel, which makes it hard for me to do anything during the day when Raya is home. The school health aide at my big kids' school has had me on speed dial lately for one reason or another. After picking one kid up early from school and then a trip to the allergy & asthma doctor today,…

It shouldn't be this hard.

I had a meeting yesterday. It was not an IEP meeting, but rather a meeting to discuss the re-evaluation we will be doing to determine whether or not she will continue to qualify for an IEP going into kindergarten. What I did not know was that we would also be discussing concerns and needs for kindergarten, nor did I expect to hear the phrase "We don't have the staff for that" as many times as I did. I expected to have mountains to climb but was not expecting to be confronted with them yesterday and was not really prepared for those discussions. Now that I know the areas that I will meet resistance on, I can at least start preparing my case and finding out what rights & protections we have for those things. I'm telling myself that's a good thing. I am also hoping and praying that it will not be as difficult as I am now afraid it's going to be to get what she needs (and we are not asking for anything unreasonable), and my prayers will be more specific now …

Living in the Woods

Parenting is hard. There is so much to worry about. Throw in complex medical conditions, and what is considered "hard" about parenting changes. The things that are at the forefront of the mind are very different for parents of medically complex children. The stresses of parenting a child without medical conditions certainly exist, and they are real and valid. For parents dealing with medically complex children, those typical worries still exist but they have to take a back burner to more basic, primal needs that keep the child alive.

The term "medically complex" is a vague, umbrella term used to describe a wide range of medical conditions that present unique challenges and require special care on an ongoing basis. There are no official parameters regarding what conditions are considered to fall under the umbrella of medically complex, but chances are that if a child requires ongoing care with a herd of doctors and therapists, he or she is medically complex. Many m…

Autism Awareness Day: Some thoughts on acceptance

I need to preface this by saying that Raya does not have autism, and that my purpose is not to somehow cheapen or lessen the struggles that families of children with autism go through. Even though autism is not on Raya's diagnosis list, she does struggle with many of the issues that children with autism struggle with. Since today is about awareness and acceptance, I wanted to share some thoughts and feelings that I have had recently about acceptance of children with special needs of any kind.



A few weeks ago, one of the kids had a friend over to play after school. Something small but significant happened that day. It hurt my heart and I have been trying since then to sort out my feelings and put them into words, but I haven't been able to. Last week, another small but significant thing happened that put my world back into balance, and I think that today is the perfect day to talk about both experiences.

Our kids are blessed with great friends who live within walking distance o…