BRIGHT's Question: You have really appealed to those parents entering into the world of special needs. Do you see your book filling a well-needed gap?

Dawn's Answer: I do see this book filling a gap.   I decided to write it, in part, because of my own frustration of not finding a book such as this when my child was young.  I feel like it could have been very healing to make a connection with another parent who could understand what I was going through.

I hope the people who are just starting this journey get the most out of it...specifically, that they are not alone. Someone else in the world understands their heartache on a level that anyone else without a special needs child can't (despite their best efforts).

But I also think that there's something in it for parents of older children too.  In reading my book, it will bring them back to the beginning of their journey and I believe that revisiting that place once in a while helps us to clearly see how far we've come as parents and as human beings.

For the professionals, who I hope read this book, I want them to be able to see the bigger picture with our kids.  I want them to understand that there is a whole other story going on in life besides the 15 minutes they spend with our child.

For friends and family members, I think this book will serve as a voice for their friend or relation who parents a child with special needs.  Sometimes it's very difficult as the parent to explain what's going on both on a daily basis and what's going on emotionally.  I think being able to read about it puts it into another perspective for them.

BRIGHT's Question: How would you advise a parent to channel angry feelings towards what happened to their child into a positive thing?

Dawn's Answer: I'm a firm believer in journaling.  I think it's important to have a place to write down what you're feeling, be it negative or positive, that is safe from censure or recrimination.  A journal is the one place where the truth comes out and by doing that, often times we can find the answers we seek.  Even if the question is, "Will I ever be ok again?" 

Having a journal though will not necessarily resolve anger, but it helps to focus the anger and "put it some place" so that we can be functional for our child. 

For myself, I didn't wake up one day and decide that I was going to put the anger behind me.  In fact, it took a good five years because, although I knew that I could not live my life angry, I also felt that I couldn't just "put it behind me" either.  If I did that I felt like it meant that I forgave the doctors and that felt too much like a betrayal of Jake. (It's really a much more complicated issue that you think!).

I guess when I started seeing all the good things that came out of this tragedy, it was easier to "release" the anger...which is different than making a conscious decision to move past it.  Does that make sense?

BRIGHT's Question: You went through quite an additional journey with the building of your home. What advice would you have to adapting a home for disabilities and what in particular do you see you could not do without?

Dawn's Answers: About the house?  Well, let's just say that if I had to choose between building another house and death by fire, I would probably strike the first match!  That said, it is likely that I had such a difficult time because I am an "Idiot Magnet".  Idiots are apparently drawn to me by an invisible force!

 Be that as it may, however, if I was going to advise anyone, I would tell them to spend the extra money and hire a general contractor!  Failing that, expect that it's going to take at least six months longer than what they tell you.

There really isn't anything I could do without....Wait, strike that.  I could have done without the Jacuzzi tub in the master bathroom.  Though my step-daughter faithfully dusts it once a week, I still don't have the  time for a good soak. (I wasn't kidding when I said that to Liz Walker!)

Everything else was a necessity, like the elevator since Jake is non-ambulatory; the wider hallways and door, etc.  If anything, if time and money allowed, there are a few things I would  either change or have added, like a Barrier Free Lift, for example.

BRIGHT's Question: How have you navigated through the educational system?

Dawn's Answer: I started early...very early.  When Jake was only a year and a half old, I started checking out schools.  Also, I immersed myself in all the information I could find about IEPs, etc.  Additionally, before beginning the navigation process, I already knew what I wanted for Jake, where I would compromise and, more importantly, where I wouldn't. 

I think it's important not to walk in blind.  If you do that, your child could be missing out on some important services.  Remember, this is your child and you don't have to accept the "first offer".  There is almost always room for negotiations.

Also, I stay on top of things.  For example, if they want to decrease Jake's OT from 3 times a week to twice a week and I don't necessarily agree, I will say, "OK, we'll try it your way and then revisit the issue in 2 or 3 months.  If your way doesn't work, then we'll do it my way."

Advocating for your child is important, but it's also important to be flexible on issues that may not be as important as others.  Sometimes, even if I know my way is better, I still will give them a little time, even if it's just long enough to shoot themselves in the foot!

 BRIGHT's Question: What are your hopes and aspirations for Jake?

Dawn's Answer: I just hope that he continues to be the happy child that he is.  I hope that his struggles are lessened because I am his mother.  I hope that when he is ready to move on to the next life, he can look back on this one and know that I loved him and that he did a great job as my teacher.

 BRIGHT's Question: What are your thoughts on continuing therapy and trying new ones for Jake?