I’ve come across a book that I think all parents of kids with special needs should check out. Although The Parent’s Guide to Speech and Language Problems would appear to be relevant only to the particular population named in the title, I found it to contain some universal chapters. I would particularly recommend portions of this book to all the parents of children and teens with Marfan and related disorders, especially the newly diagnosed.
Chapters 10, School Daze: Navigating Your Way Through the Individualized Education Program, and 11, Are You Covered? Cutting Through the Red Tape of Insurance, are particularly amazing. I think because the author, Debbie Feit, is a parent of two kids with special needs, she knows better than any expert how to explain “the system.” Chapter 10 goes through the evaluation process step-by-step, then details the IFSP (for kids under 3) and IEP (for kids 3 and over). Feit provides examples of IEP forms, goals, and potential problems, as well as how to address those. Reading this before starting the IFSP process for the Menininho was so helpful; I had a good idea of what to expect and what my rights were, as well as what kinds of questions to ask and what services to seek.
Chapter 11 is a potentially even more vital read. Raise your hand if you’ve been denied by insurance for some aspect of your child’s care. I KNOW a lot of Marfan families have been in this position. Some of the specific examples in this chapter aren’t relevant, but the general information is. Feit, as usual, starts with the basics of what questions to ask to get general information on coverage. She then walks you through the steps of submitting a claim and how to appeal if it’s denied, including how to file an external appeal (how many of you knew about this option?). She even includes an example of a letter to send for the appeal; you can use the basic outline and tweak it to suit your child’s condition and needs.
The rest of the book is specific to the needs of children with speech and language problems (autism included). I breathed a huge sigh of relief when I came across not only the “normal development” chart, but the “when to seek help” chart. Menininho didn’t have many of the skills listed for normal development, but met just about every criteria under when to seek help. My concerns were validated! I knew Mark & I weren’t crazy!
Feit and her co-author, physician Heidi Feldman, do a great job of laying out the book in a very logical format. The formatting makes it easy to skim too, so that you can find the information you’re looking for. For example, they provide information on the most common communication disorders in one section, suggested therapies for each one in another, so that you can easily find what’s relevant to your child’s symptoms/diagnosis. I’d say the book is biased towards discussing verbal apraxia over other disorders, but that’s what Feit’s children have so it makes sense that’s what she would choose to write examples about. Snippets from other parents are included in boxes throughout the book.
Two other areas I personally found useful were the sections that broke down the benefits and drawbacks to various methods of therapies (including alternative therapies), as well as how to know if your child’s therapist is a good fit. While there were a couple of things that have annoyed me a bit about Menininho’s therapist (just little personality quirks), I’ve been able to go back to Feit’s list and see The Man is actually a great find. He gets along with M, and M. likes him in return. I’m a participant in every session, I get weekly verbal and written feedback as well as assignments of things to work on with M. on our own in between sessions. And most importantly, M. is making progress.
When the audiologist confirmed that Menininho had some kind of communication problem, I checked out several general books from the library to help us form our “battle plan.” Nothing I read was as useful as The Parent’s Guide to Speech and Language Problems and I can’t recommend it enough.
Buy it: if your child has a communication delay or disorder, particularly if you’re at the start of the diagnostic process. It’s currently selling for under $10 on Amazon.
Borrow it: if you child has any other kind of delay/disability (or if you do, for that matter!)
I was not compensated in any way for this review. I’ve never spoken with either author. I just really liked the book and wanted to let all of my friends know about it!