Wednesday, May 23, 2007

A Continual "Letting Go" (part two)

One way to think about parenting is that it is a series of "letting go's". We let go of our kids' hand when they take those first teetering steps on their own. We let go of the bike when they make their first weaving solo trip on their two-wheeler. We let go when they walk into that big brick building on their first day of school and become part of the educational system. We let go when we hand them the car keys. We let go when they graduate and move away. And finally, we let go when they stand in front of their friends and family with their soul mate and begin their very own family.

With each letting go comes a mixed bag of feelings. Sometimes a bit of sadness, a tear, a lump in the throat, and a bit of worry. But that is often overshadowed by the feelings of pride and joy as we watch them grow and become the men and women they are capable of becoming.

Parenting a child with special needs has many of those same moments of letting go. But in many instances, there are other times to let go that can be very difficult.

Whether we realize it or not, many of us have an idea, an expectation, of what life will be like. When a child is first diagnosed with a disability, we are forced to start letting go of our expectations. We let go when, at a very young age, he stops getting any invitations to birthday parties. We let go when there are no friends to invite to his party. We let go when the preschool teacher calls for us to pick him up because she can't control his outbursts. There is a long series of "letting go's"... being placed on psychiatric and behavioral medications, adding new names to the long list of specialists involved in his care, starting family therapy to help siblings cope, needing more special education support in the classroom, setting up special funds and guardianship documents to provide for long term care, and most recently, extending his time in school so that he will not graduate with his class (see The PPT). Each "letting go" is a change in expectations about what our life will be like, and more importantly, what his life will be like. Each "letting go" is letting go of a dream.

Some experts who work with parents of kids with special needs compare this process to the well known stages of grief - denial, anger, bargaining, depression and acceptance. And we've certainly experienced all of those stages as parents. But what makes it difficult is that parents of kids with special needs go through this process repeatedly. I may be in a very good place of acceptance when suddenly there is a new "letting go". Then I find myself back in anger or depression and working my way through the feelings once again.

Most parents who have a kid with special needs will, at one time or another, stumble across a copy of Welcome to Holland by Emily Kingsley. This short analogy does a pretty nice job of summarizing some of the feelings for parents of these kids. And when she talks about the pain of "letting go" of the dream, she says it will "never, ever, ever, ever go away". And she is right. There is a certain relentless quality to coping with the needs of a child with disabilities.

Please don't read this and jump to the conclusion that we spend our lives being sucked into a quicksand of depression and sadness. That is not the case at all. Son17 is a great kid and has made huge strides in growth, maturity, and the development of coping skills for many of his disabilities. The doctors we've worked with have done remarkable jobs in providing therapy and medications to help him be more successful. And we've been very fortunate to have the support and help of many very talented professionals and many gifted and understanding teachers.

I also realize that in many ways, we are the lucky ones. Many families struggle with disabilities that are much more complex. There are plenty of kids who are medically fragile, kids with more profound learning disabilities, kids who are neurologically compromised in ways that cause seizures or other neurological complications. I can only imagine the struggles of some of those families.

For all of us, parents of neurotypical kids and parents of kids with special needs, we let go. Over and over. Many times we let go of the same things.

But sometimes not.

22 comments:

Chicky Pea said...

((((((((((((HUG)))))))))))

I totally understand the letting go process. I have to say it was sort of like that for me when I was trying to get pregnant. As I like to say, I am fertility challenged and it took me over 7 yrs. to finally have a child. I had taken for granted that when I wanted to have kids it would just happen and when it didn't I had to let go of that notion and move onto the next level, and there were many. Even once I got pg it was not easy and there were other expectations I had to let go of. I believe though, that all of these letting go's make us stronger as individuals because it forces us to have to cope with things. Again, you are a wonderful Father. Your son is very lucky.

Jenster said...

Thank you for continuing to reveal your family's life with us. With each post I find you and your family to be exceptional people.

meno said...

Kind of like parenting a "normal" child, but many many times more letting go. It's hard enough with mine, i can only read in awe about you and yours.

Thanks for the PPT explanation.

EsLocura said...

Another great post. Your willingness to share so openly is appreciated. I admire parents, all parents more each day.

Rainbow dreams said...

I've been catching up the last three posts at once.. I struggle with the continual letting go of parenting....and for us that isn't compounded by disbilities... thank you for sharing and for giving insight into the realities you face, Katie

Oh, The Joys said...

Em,
Thanks for writing so honestly and with such integrity about your experience.

I appreciate learning from you.

Best,
Jessica

Sheila said...

I have trouble letting go... of anything.

whimsicalnbrainpan said...

Thanks again for sharing your world with us. And just in case I haven't said it, son 17 is lucky to have you as his Dad.

Dorky Dad said...

Thanks Em. I really appreciate your having shared that, as well as your feelings.

I think normal parenting can be frustrating and depressing, too. I can only imagine that it would be more so with a special needs child -- but the rewards would be great indeed.

I will say that your son is fortunate to have such a great set of parents.

Kismet said...

We are in a similar boat with a different crew. Thank you for putting so eloquently your thoughts and feelings of your journey. The love you feel for your son (your whole family)is palpable.

You are a great parent.


~K!

Melody said...

You made me shed some tears Em! You wrote this post beautifully... I know others before have written this but it is true, you are a terrific father!

Jocelyn said...

Oh, this is so poignant, so lovely, so well done, Em.

To understand why you're feeling the way to is essential to restoring equilibrium, isn't it?

Jazz said...

Son17 is lucky to have you as a dad.

I am humbled. I'm not sure I could let go with such grace and serenity as you.

SzélsőFa said...

I've read the 'Welcome to Holland' short upon your advice and I liked it. Also I liked this extremely careful and sensitive post about you and your family - about letting go. My elder kid, now 10 has never been diagnosed with anything near what your son has, but he also has his special needs and ways. I kind of hear what you're saying here.
I too, has gone through the 'why can't he have real friends' - 'why the teacher sends him home from time to time to have a day or two off', and the 'wow this kid is so special I'm so overwhelmed by him' kind of feelings.

Redneck Mommy said...

Great post Em. You captured it beautifully.

I just wonder if I am ever going to have the chance to let go again.

I'm still shaking my head with frustration...

Bardouble29 said...

Fantastic post my friend, thank you for sharing about your son and your life. HUGS

Logophile said...

In some ways, expectations are the hardest things to let go of, those and hopes.
You are a great daddy.

thethinker said...

Again, it's great of you to share this. I read so many blogs by parents and it's good to realize that what they write isn't necessarily representative of all types of children. It's good to contrast what I read there with what I read here to get a bigger picture of what parenting is really like (not that I'm considering it anytime soon).

Winston said...

There are some parents, and some children, who cannot or will not let go. I am close to one of those situations and it is most unhealthy -- for both. A "child" in his/her late 20s should who lives away from home (another city) should be able to survive and figure things out without calling home several times a day. And it seems the mother gets in a panic if those calls don't come in regularly. Maybe this is a definitive case of co-dependency.

MarmiteToasty said...

Your family is an inspiration to many...... I have learnt so much from your blob, about so many things..... so I fank you.......

x

tulipmom said...

I can't tell you how much it means to read these posts. I always feel such relief when I discover another parent who truly GETS it.

velvet girl said...

A beautifully written post, Em. I can empathize about having to let go of any hopes of normal (because of my son's deadly allergies). But (as we've come to say over the years), "it is what it is" and you just have to try to find the silver lining in it all.

Thank you so much for sharing all this with us.