Advocate

Since I last blogged, I found a book that I like a lot. I have been on the lookout for a book that might help us navigate our world with Liam, but so many of the books I’ve seen/researched are geared toward a specific disorder that Liam hasn’t been diagnosed with. There are tons of books on Autism/Asperger’s, ADHD disorders, Down’s Syndrome, etc. Of course 18 p deletion is so rare that no one has written a book specifically about it (that I have found, at least), so I was in search of one that might at least cover some of the things that we encounter. I’d say we browse a Half Price Books store about once a week or so, and earlier this month I found one! It’s called Special Kids Need Special Parents by Judith Loseff Lavin.

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It was published in 2001, so while it is not exactly “current,” it still feels that way and I have found it to be helpful to me already. If anything, it helps to validate my feelings about being a mother of a special needs child– I flipped to a random part at first and read the words of several different parents in a similar situation as us and felt so…. relieved, I suppose, that they were feeling the same things as me. I like it also because it covers a variety of disorders, from ones similar to Liam’s to just physical abnormalities and all those in between. It gives tips on how to deal with all kinds of issues that we know we will encounter, such as: dealing with feelings of grief and anger; finding suitable, reliable childcare; how to cope with teasing; the impact a child with special needs can have on a marriage, siblings, and grandparents. These are the topics that I’m finding the most helpful for me so far. You might be thinking, is she endorsing this book or something?! I’m really not… I’m just excited to have found something that might be helpful to me and others that have kids with special needs. Of course in this day and age with access to anything on the internet, it may not seem necessary, but sometimes it’s nice to have a generalized approach to these issues and read it from experts that you can trust.

Anyways, in other news I start back at work in a couple of days and I’m finding that I have a new perspective on the entire world of education now that I have a child who will need classroom intervention or special education services. I consider myself to be a pretty patient teacher, and the special ed students that I’ve had in the past have never been a problem for me or my classes because we made it work with the help of inclusion teachers and assignments that were adapted to individual needs. Now that I’m going to be teaching again with this new knowledge about Liam, I hope that I will be even more patient and understanding about each student’s struggles, and of course I want to learn as much as I can about Liam’s options when he gets to school so I can be the best advocate for his education that I can be. It might mean that he will be pulled out of regular classes instead of being expected to perform on the same level as his peers, and that’s okay. It might mean that he will have an aide follow him around to each class all day to help him with school work and behavior, and that’s okay. It will definitely mean that we will have lots of meetings with principals and special education teachers each year to monitor his progress and set new goals, and that’s okay, too. We want to do everything in our power to ensure that Liam gets the best education that will work for HIM, and I hope that my experience as a teacher will help us make those decisions more easily.

2 thoughts on “Advocate

  1. Thanks for the update on Liam. He is so lucky to have such loving parents and sister to care for him. The more information you can obtain regarding his diagnosis, the better to understand that you are not alone. I will continue to keep him and you in my prayers.

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  2. Thank you for writing and being another special mom. I know you are doing a great job. It’s a big challenge but there are many blessings and there is lots of growth. I was so thrilled that my book, SPECIAL KIDS NEED SPECIAL PARENTS, was helpful to you. Writing that book was a labor of love and while my goal was to help others, I found that it helped me, too. One of the gifts of being a special parent is all of the wonderful and genuine people you meet on the way. May you and your family be blessed with strength, wisdom and love. Sending you many hugs. Most fondly, Judy Loseff Lavin

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