Tuesday, April 22, 2008

A Day in the Life

I love my children, more than the air that I breathe I tell them. Tali is then quick to point out, "but without the air you breathe, you wouldn't be here." To which I reply "exactly!" and she just raises her eyebrows.

Some days, at the end of the day, I just feel spent beyond my emotional budget. Raising children was never guaranteed to be a cakewalk. In fact, the only thing I'm certain of in child rearing is that there are no guarantees.

But parenting a child with special needs just wipes me out some days. Many days. I've never written that, but you may have guessed that life isn't all just the fun parts that I've shared. I feel sometimes as if I am a SWAT team member rather than a parent. I recall myself saying today "Julian put down the scissors. Those are very sharp. Juli - no, don't run with them!" I then had to push a table against the wall to corner him and thus retrieve the scissors.

Coming home from visiting Grandpa in the nursing home, Scissors had to carry him into the house like a sack of potatoes as he kicked and screamed not wanting to get out of the car. "Sure Julian, I'll just sit here in the car until you've menaced me enough and then we'll go inside. Or perhaps, I'll leave you in it and you'll knock it into neutral and run it through the garage. No problem," I thought. So ruling out those options as possible ways to cap off the day, I called in Scissors to get him out of the car, hence the kicking and screaming.

The child exhausts himself along with us. It breaks my heart sometimes that life should be so difficult for him. Sometimes it drains every ounce of patience left in my body until I find myself yelling at him.

The other night he put on his pajamas - an every day task for many six year olds, but still difficult for Julian. He did great but the top was uncomfortably backwards and I saw him fidgeting with it. I said, "Oops, looks like your top is backwards. Here, I'll show you a way to fix it without having to take it off," because with Julian it's all or nothing at all.

He said "Oops -mistake," to which I replied "that's okay, I do that all the time. That's why I know how to fix it. I've done that at least a million times!"

He said in an incredulous tone "you make mistakes?"

In that one moment, I just felt what it must feel like for Julian. Every thing is easy for the rest of the world, but difficult for him. I could have imagined this, but he seemed a bit buoyed by my answer, "all the time, that's how I learn to do things."

I also love my kids more than there are grains of sand on the beach and stars in the sky. They seem satisfied with that answer. I'll save my complaints about his sleep problems for another day; I hear him walking around.



Claire said...

It's ok to express frustration from time to time. It ain't easy raising any kind of kid in this day and age. Julian sounds like some of the kids I work with. I go home exhausted after school on many days, so I can empathize with you. It's just hard sometimes, especially with a lack of sleep :)

tsduff said...

Sweet mother that you are, I know there are rough times. My sister has one daughter suffering with mild autism, and I can remember Julee struggling many a night with Tamlyn's night terrors, endless screaming and kicking... heartbreaking sessions for all. When I was babysitting my nieces and nephews whilst their sibling had brain surgery and their parents were staying at the hospital, those nights were long and uncertain. But we all lived through it - Tamlyn and her twin sister Rachael are now 11 (living in Albania) and all is well. Hang in there - you will all get through this and come out okay.

Miz BoheMia said...

Oh amiga mia I bow down before you because I am sure that I cannot even begin to imagine how exhausted you must be! No special needs kids here and my goodness how they wear me down already!

A lot of what you wrote about Julian sounds very much like my son though. It takes telling him something 20 times before he listens and resorting to "cornering tactics" and the like are commonplace in this house too. God forbid he make a mistake and the shrieking and crying and anger he expresses are monumental though we are working on having him use words to express what he feels rather than shrieks... something Lil' B was able to do right off the bat and something he needs extra focus on. I hear from a lot of girlfriends who have both sexes as children that their children share the same similarities and coping mechanisms so...

I think a lot of Julian's behavior is regular "boy ways" of handling things but add to that special needs and I can imagine how they must be accentuated and I take my hat off to you my dear G! You are one amazing mama and it is so normal to vent and vent you must and I am glad you did!

I like reading Terry's words up above... very comforting indeed... wish I could be there to give you a big hug and babysit! :-) But since I am all the way on this here Golden Gate coast o' mine, I will send you and your beautiful family many neshikot for now...

Mucho love...


G said...

Firstly, I'll say that I'm sure I can't convey in words what a comfort your comments are, but I'll try.

Claire, better to let it out here than to yell at Julian, my dear heart. He can be a little wild stallion but then again, they make them tough where I come from :) Thanks for your words of encouragement.

Terry, those words mean more to me than you can imagine. I sometimes get stuck in this moment and think "will he ever outgrow this?" so reading your comment was a salve for my tired eyes. You are a wonderful sister to have - to your real life family and here in the blogs.

MizB, it's good to have friends to talk things through with. I am so happy to see you back with your calming sweet words. You know, sometimes in the day to day stress, I do forget that a lot of it is just what you said - Julian's boy ways which are much different than the girl's :) We just don't get much of a break because my family is far and offers from friends haven't been so forthcoming. Scissor's mom is nearby and she is wonderful with Julian so there is that. But thank you ever so much - I'm glad I vented because I feel better already from my friends' words of encouragement here.

Thank you all so much. Now I should take this opportunity to lie down as I have some headache/sore throat thing and everyone is out at the park so that I could do so.

Love and big neshikot to all. XOX

Ariel the Thief said...

Your writing says that not only do you love your children and are so tired but somehow you always find the right thing to do and say. That is something cannot be learnt. You do very well, poor, tired, loving Mom. *hugs*

G said...

Ariel, thank you. Although sometimes there are the not so good mixed in with the right thing to say :) Nobody's perfect, eh? *hugs back*

Doug said...

I always figure there are too kinds of parents in the world, those exhausted by addressing their children's special needs and those exhausted from lying to themselves.

Good choice, I think.

G said...

Yes, I guess I'm exhausted in a good way. I think.

Anonymous said...

That Doug!

Tell Julian often that you make mistakes and learn as you go. He needs to hear that now, and will continue to need it as he grows up.
That one sentence will help him as much or more than any therapies. It's freeing :)

I'm writing an article on living with NLD for the LIP--"our children's brains" series

I'm trying to go with a humorous approach as so much of it is funny

But had I gone with my gut feelings my apartment would have been on the market months before it went. I heard too many voices in my head tell me about my imperfections--and consequently my apartments

It will sell, and this might be the biggest lesson I have ever learned. I'm not a mass of imperfections and should always go with my feelings.

Julian will always know people make mistakes--I knew it intellectually but not in my heart

G said...

Pia, that Doug indeed :0

Firstly, let me say that I'll look forward to reading your piece as I always read that particular column. Secondly, I'd like to say that I so appreciate your comments when I do discuss Julian as you are coming from the side of somebody who knows what dealing with the difficulties can mean.

It is important, in general, for children to see us "warts and all" but especially for the Julians of the world. We are all far from perfect beings but each of us brings something to the world that is unique and valuable.

Just yesterday Julian greeted Tali and I at the door, hugging us and saying to Tali "come in, my sweet." Never mind if they were fighting ten minutes later, those moments are priceless.

On the topic of self doubt, well I understand that more than a little but it's good to persevere and overcome it. Good luck with the sale and thanks for your insight.