Monday, April 17, 2006

Monday Musings, but I'm not calling them Confessions!

Kim and Suse (if I could do the highlighted links, I would. But the technology isn't obvious to me.) have recently posted (as have others, I'm sure) their guilt about their special needs sons.
I don't often cry, but I did reading both their posts. I live their guilt. I cry their tears of hopelessness and hopefulness at times.

Oldest is almost 6; is ahead of the curve for reading, writing and empathy. He seems light years older than some of his contemporaries. And also 'school of hard knocks' younger. We have chosen to let our sons live a more gentle life and have controlled their tv viewing, peer group and outside influences. We have elected to delay their entry into primary education by one year, each. They are summer birthday boys, so we feel well within our rights. As a result, they are both very gentle, kind, loving little boys. They are also pretty quiet, as boys go.

Youngest is almost 5; and he is way ahead of the curve in math and numerical skills. But very much at the bottom of the rung for speech, interaction and social skills. He arrived at 7 months of age to our family; and he was very ill with ear infections for the first 7 months he was with us. He also was a very needy child; very clingy to me to the point that I had to run out of the house to escape; screamed if he couldn't see me, and wouldn't tolerate variations in any part of his routine. Didn't he UNDERSTAND that there were 2 babies in the house (Oldest is not quite 11 months older)? That I was flipped out by 2 babies in 2 years? That K's job still meant 60-70 hours of week a week, even though he tried to work less? That I didn't know he was a different baby, and needed so much more of me? I look at photos of our family back in the early days of being the Four of Us, and want to sob. Youngest looks bewildered, sad and lost. I look the same, frequently. In some of them, I am tearing Youngest's hands off me; I simply couldn't take one more minute of his clinging, pinching grasp. In some of the photos, Oldest is trying to comfort Youngest, which really makes me sob; the Baby is trying to comfort the Baby. Why didn't I see then that Youngest was different, that he needed some professional help? Why did it take friends of mine saying "Hey, he should be doing "x" by now - do you think you should have him evaluated?" and then finally getting the appointment, but then it took Four More Months to get him in? Then putting up with what was 'offered' vs. 'demanding' what he should have gotten, early on? How much time have we lost because I was too scared, too much in denial, too LAZY to do more research? How much have I set him back permanently due to being angry with him most of his very young life, parking him in front of videos to get a break, feeding him the wrong food, not getting intervention sooner?

But, I have forgiven myself, mostly. I did the best I could. His skills fooled me into thinking he was ahead of himself. He walked at 9 months, ran actually. He could count to 30 when he was 19 months old - nevermind that was the only talking he was doing. He didn't make eye contact with us, but he was avidly taking apart things and putting them back together - isn't he gifted?

But the one thing that I did, the deal that I made with the Devil that I will never forgive myself for, was having surgery on his foot to correct Syndactyly - connected toes. The surgery was successful, but who knew about Asians and Keloids? That a keloid on the foot would be a horrible, terrible thing? That it would be inoperable to repair, and would continue to grow, as that's what keloids do? That it would mean he could not walk properly, as putting pressure on that huge keloid causes him great pain? That it would affect him for quite probably, the rest of his life? This is the biggest grief that I carry. That it was elective surgery, and I made the election for him when he was too young to vote. And it may hurt him forever. All the other things I can forgive myself for, but for this surgery, I cannot. I think I have forgiven myself, and then he limps towards me, and I die. A. Thousand. Times.

13 comments:

BabelBabe said...

Oh dear, how could you have known? You were trying to do what was best. We all make decisions FOR our children -- talk to me sometime about the debate of circumcision or not, since there were no religious considerations -- not quite the same but the idea of making a decision for a child incapable of making it himself just yet...heartstopping implications. As you apparently well know. I am trying to be comforting in some way -- you couldn't have known. *Please* try to forgive yourself.

jak said...

I'm crying just reading this- I'm so sorry you feel this way-I makes me feel sad-you hadn't traveled this raod before-you did a great job and when you found out youngest had different needs- you did what needed to be done- you are a frist time mommy to a speical needs child-you find your way by experiances and learning-if he was your second child with speical needs-you would have more answers and knowledge as to what to do.

That's funny Babelbabe brought up circumcision-we were just talking about our son who is 11- he is uncirced. and we lived in San Francisco when he was born-his doctor didn't recommend it- the hospital doesn't do it unless reguested- we just didn't see a need for it- now we live in a more conservative area and find out he's embarrassed by it! he's nervous about gym class?:(

I feel bad- not the same as Youngest's keloids-but you didn't know-you couldn't have known-

as far as the clingy thing and feeling guilty- I know that too-My Jillybean was the same way-she had nothing to do with her dad the frist few years of her life- she had to be peeled off me(as of just last year and she was 7! and she cng to me everyday at drop off time from per school thru second grade- i felt bad for her and often I would feel bad for me- I would feel angry and resentful that I just couldn't enjoy her the same way I did my son-I love her very much she was just a different challenge- I would live her just feeling awful and i would be in a sweat! I felt like a bad mother when this used to happen-she has been harder then my son in alot of ways-but she is also so loving, giving, smart and funny-she is a joy- and I learned as I went along how to better handle the situations-most of the times my friends thought I was being so calm and handling her so good- but inside I was feeling awful- it makes me cry right now- but we need to not feel quilty-parenting is a learning as you go kind of thing.

My float said...

You made the best decision you could under the circumstances. I feel for you. I have some friends with a litle boy with syndactyly and they have no idea what to do about it. It's quite rare, from what I've read, so even the doctors don't always know the best course of action.

I am sure you are a fantastic mother. Children always go to the people who can best look after them.

Kim said...

G'ah! This road we travel.

Felix clung to me like your youngest. Wouldn't have a bar of Chef until the last year. When I think of his world - when we talk about what it is having a brother with special needs, and that he needs to know that Mummy and Daddy understand and know what he deals with:
"That I have an older special brother and a younger baby brother and because I'm in the middle I have to take care of both of them?"

Oh heartbreaking.

Bec of the Ladies Lounge said...

Hi Vickee
I think it's all been said - but if you want to know how to hyperlink (cos Kim had to show me) you write the word or phrase in the draft post, then click and drag to select it, then click on the button at the top of the posting box that shows a green globe and a chain link. When you do that a box will pop up with "http://" already there. You can type in the url you want your original word/phrase to link to - or paste it if you've gone and copied it from the other website (that's often easier but you have to jump around a bit and keep several pages open!). The link should be obvious in your post when you're finished.

I don't know if that's helped or hindered - Good luck!

Suse said...

I am sure you are a great mother. As you said to me, we're all doing the best we can with what we have.

Forgive yourself.

blackbird said...

I have said this to bloggers, friends and my own children -

Parents (good parents, normal parents, young parents, old parents) do what they think is best for their child.

NO ONE (save for the mentally ill, the drunk, the addicted) sets out to destroy their child's life.

We are faced with decisions that tear our hearts from our chests, sometimes on an hourly basis, and
we
do
our
best.

If you had not chosen surgery there would have been other torments.
Will he be healthy?
A good man?
A productive person?

I'm sure the answer is 'yes' to all three.
Let go.
Go on.

(and perhaps explore alternative treatments or therapy to help him adjust)

MsCellania said...

WOW! I did not expect this outpouring of support. Each one of you has offered great words of comfort. Thank you all so much!
I will add that for the Matter of The Foot, we do the following:
Youngest gets fitted about every 9 months for a new whole-foot orthotic brace. It is a mold of his wee foot, and so offers a comfy space for his keloid to live, enabling him to walk more normally, not supinating and putting all his weight on his heel. We also buy special shoes to accommodate the brace (at $125 a pop!) We also have Occupational Therapy/physical therapy that desensitizes him to the keloid and helps him counquer his physical world (more to work on there than the keloid). I use 2 products on the keloid: a true Snake Oil from Vietnam that numbs the keloid, and a Scar-So-Soft herb prep from Hawaii that is wonderful for keeping hypertropic and keloid scars soft and heal. Both spray on, and youngest likes both of them. The snake oil is a bit stinky, so we don't always use it; just when there is a great amount of walking to be done. I also keep a 'sag wagon' (we don't call em strollers!) in the car.
We are also very matter of fact about his keloid; it's part of him and a presence to be dealt with. It doesn't get more attention than it needs, or less. It's a scary, ugly thing, and kids tease him about it at the pool. We have had to work scripts with him to get him to handle the teasing.
I'm generally strong about youngest and the footy; just sometimes when I read so much about special kids, I wail, and then add the addendum of 'Well, I did this TO him' not in a 'Beat THIS' sort of way, just a Bit of a Fit way.
And I do know a bit about snydactyly. If any of your friends have this condition in their children, I have Da Links!

Susie Sunshine said...

The parenting books leave out the guilt part of motherhood. Skip right over it as if it isn't there.

It's always there. The vaccination that may or may not have caused autism, the crib that collapses and is later recalled, a baby born with a hole is his heart-were you sick when you were six or seven weeks pregnant?-because that's when the heart develops.

Forgive yourself. You didn't know.

blackbird said...

see!

so pro-active
so involved
so caring (running scripts!)

I appreciate you more all the time.

MsCellania said...

Ack. You guys STOP now I am bawling and my boys are concerned.
Because you see, mommy doesn't cry in this house. If she started she just might now stop.

Carolyn said...

You have nothing to feel guilty for. You made the same choice I would have made were it my child.

And as far as not recognizing special needs, it seems obvious when you are looking back.

It isn't obvious though when you have never lived it.

My son was older than two and a half when I caught him. Sure he didn't talk, but I thought that was because he was a boy, I thought! And I welcomed the break from my incessantly talking daughter.

Besides, like your son, he is very intelligent. Looking back, I can see it, but only armed with the knowledge I have now.

Mommy guilt is so fun, isn't it?

Lazy cow said...

Vickee, I couldn't bring myself to post when I read this initially. It's been on my mind the whole time. I have nothing to add - just pretend I said what Blackbird said.