Comments on Fighting Monsters with Rubber Swords: SCHUYLER'S MONSTER: Making a New Kind of Family

I know exactly what you mean by the "normal" rules...

2008-01-19T11:22:00.000-06:00

I know exactly what you mean by the "normal" rules dont apply. I just wish the rest of the "normal" world could recognize it.

My daughter is 15. Since she was diagnosed in the 1st grade, I have walked on egg shells between school administration, other parents, sports related activities etc . . . I am so scared all the time that a move I make will hurt her in the long run. . . If I push too hard or if I dont push enough she will suffer.

My heart goes out to you and your beautiful daught...

2008-01-17T19:23:00.000-06:00

My heart goes out to you and your beautiful daughter. I too have a special needs child and struggle with it daily. My daughter was diagnosed at 20 months with severe hearing loss, but with the help of hearing aids is now able to speak. I pray that new developments in medicine may someday help your daughter. God Bless.

I love what you said here.

2008-01-16T21:48:00.000-06:00

I love what you said here.

I think this is my favorite video of the bunch...I...

2008-01-03T12:35:00.000-06:00

I think this is my favorite video of the bunch...I remember when we fist got our diagnosis, one of the most devastating things for us was that we felt that, in addition to everything else, we now were a "part" of something, a club of sorts, and that we'd be expected to participate.

We'd never been "joiners" (my husband's phrase) and the thought that we'd have to become such people seemed like one of the hardest things for us to accept.

Well, of course, we know now that there are as many ways of parenting a child with special needs as there are parents. And while we all share a deep, abiding love for our kids, that love can manifest itself in any number of ways.

It's liberating, and refreshing, to allow ourselves permission to be whatever kind of parents we need to be.

This is wonderful and so important for other famil...

2008-01-02T21:15:00.000-06:00

This is wonderful and so important for other families to hear/see. I agree wholeheartedly that each family must find their own way of coping, but it's comforting to learn that other couples struggle (and sometimes break) and how they deal with it.

Yes, you'd think that two people parenting a speci...

2008-01-02T13:07:00.000-06:00

Yes, you'd think that two people parenting a special needs child would be a perfect match, but it is hard - you become more like old war buddies. My husband and I have different ways of dealing with it all, and we try not to judge each other but...well, it's hard, what else is there to say. Guess we both have post-traumatic stress disorder and that's not a match made in heaven!!

Love your videos.

Thanks for sharing these videos, Rob. I find the m...

2008-01-02T07:12:00.000-06:00

Thanks for sharing these videos, Rob. I find the message in this one particularly moving.

Whenever I've worried about whether I'm doing something (as a parent) the right way, I recall something my mom said to me shortly after my son was born: There are a lot of ways to do it right. I think that's true for any family and probably especially when you have a child with special needs. You have to do what is right for your family. I'm glad you and Julie are finding your way.