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!

It’s been a busy few weeks on the Menininho front. I’ve gotta say…pushing for therapy was the best thing we could have done. After 3 sessions of speech therapy we’re already seeing improvement. I’ve noticed M. engaging with us more than usual when he wants something. There have been more episodes of pointing during breakfast to whatever foods catch his eye and banging on the sink when he wants his sippy cup. This kid is motivated by food and so for right now I’m worrying less about him getting a balanced diet and putting more focus on rewarding him for pointing. If he wants to eat mostly bread, yogurt, cheese, raisins, bananas, grapes, and applesauce for a time, so be it.

He and I have also toured three different group therapy centers (basically therapeutic preschools) since I was successful in my appeal for him to be approved for that service (did I ever blog about that?). I can’t wait for him to get started! Unfortunately the center we love is full right now and we have to check week to week to see if they have an opening. We’d appreciate any good thoughts/prayers/vibes you care to send our way that they have an opening for him soon. Menininho really responded to his visit there and not only do they have a 1:1 staff to child ratio, they also have a speech therapist, occupational therapist, and behavioral therapist on staff. Mark and I are confident that the program will not only help M. with his social interactions and attention to activities, but his sensory issues as well, not to mention give him another place to reinforce his signing.

Tuesday night was positively thrilling. I was away at my first ICAN meeting (more on that next week) when I got a text from Mark that read “ .” When I called him on the way to the car he’d only say he had some good news for me. Not gonna lie…I was expecting him to say he’d reached the #1 spot in gold level for Starcraft 2 or that something had worked out really well with his project at work.

Turns out? I was wrong. OUR KID SIGNED! Yes, while I was gone, Mark spent a half hour with M. and a box of raisins, working on the sign for “more” (the one The Man is having us focus on). While M. has occasionally has taken our hands and made the sign with them, but never done it himself. Until Tues. night. I was so excited I jumped up and down, called my mother (it was midnight her time), tweeted it, and made it my Facebook status. Yes, I told you I’d shout it from the rooftops.

Yesterday I was able to get Menininho to sign for me a few times. He is by no means consistent with it but that will come with time. I am just over the moon that my son is able to use a form of words to communicate with us! Hopefully the screeching will stop. And this gives me hope that the verbal words will come with time and that he’ll be able to learn more signs.

I know some may say that he just needed extra time, but I don’t buy it. We’ve been signing with him since he was 9 months old. We’ve tried all kinds of methods to get him to mimic us. I know it’s the therapy, and I can’t wait to see what other advances are in store for our little boy.

The Menininho had his first speech therapy appointment yesterday. FINALLY! His speech therapist is a guy, which was a little surprising to me just because I’ve never met a male speech therapist, but hey, that’s cool (let’s call him The Man from now on). Overall I really liked his methods, such as immediately rewarding M. after moving his hands into a sign once, then saying YAAAAY. The speech therapist we’d seen for the initial evaluation, whom I wasn’t fond of, insisted we move his hands into the sign ten times before rewarding him, which just led to a really angry toddler. Menininho actually responded amazingly well to the shorter method and by the end of the session, although he couldn’t make the sign, would mimic YAAAAAY after his hands were made into the sign for “more” (the sign of the session). This was huge and I pray this kind of improvement continues.

The Man was also willing to be flexible with his planned activities. For instance, when he saw Menininho was interested in playing with goldfish, he let him do that for quite awhile, all the time practicing “more.” But eventually, he guided M. to other activities as well so that he could assess his adaptability and sorting skills.

Yes, there were a few things that I wasn’t 100% happy about, but hearing that YAHHHH from my son over and over again is enough to keep me happy for now. Mimicking sounds just isn’t something he’s really done before. Even better, it continued after the session and into the evening.