Thursday, December 18, 2008

Dear Noah......"I don't know how you stand it!"??????


This is not a post to complain about my dad or anything like that because I love my dad ....but dad did make a comment to me last night when I talked to him that got me thinking. He has made similar comments like this to me before. We got to talking about you Noah....and how you used to far you have come.....what you might be like one day in the future....etc. We talked about issues that have bothered you in the past and things you struggle with now.

In the past when we still lived in Colorado and would only come back to Ohio for an annual family did not really know you or understand you and they did not really get exposed to who you really were and what you were like. A lot of time has passed and you have made a lot of progress. BUT back then and even today with many people other than just my dad....I will hear from time to time (when the topic of having a child with autism gets brought up).....the inevitable question, "How in the hell do you stand it?"

Last night on the phone talking with we were talking about you and autism in general and others we know who have children with autism or even more than one child with said to me again "how the hell do you stand it?" "I don't know how you stand it!" (and not said in the same way one might when talking about a parent dealing with a severely handicapped child or sick child....where the question then is given with sad undertones). I imagine people on the outside looking in do wonder how we can handle it.

I jokingly said to dad one day "that's why God gave me a child with autism and not you," ...."maybe he knew you would have a hard time handling it?"

Dad is dad and will always be dad but even he has made huge progress over the years. Dad struggled to handle even us "normal" kids...whatever that might be. I do not doubt for a moment that he would have had a very difficult time with an autistic child.

I know dad meant no harm to me or anyone by asking that. He just probably really wanted to know because he has said many times he could not handle it.

He then added "I suppose you get used to it with time don't you and you probably don't even know anything different now with Noah do you?" "It's always been that way and that is all you know?"

This got me to thinking. He is right in many ways. I try to think back Noah when you were first born....and as you slowly started to grow and develop and we could tell some things were definitely not right with you.....if I ever wondered that same thing dad and others did? I don't remember feeling like that....I guess because dealing with you or any issues that came along that you might have were things I just needed to address and I did not have time to really think about them.

Even with all the toileting issues (which still go on today to a much smaller degree...and you will be 10 years old in a couple of weeks).....even then...when I wondered how long this would go on and I would get so frustrated wiping your butt for you 20 times in a day or more.....I don't recall ever wondering HOW the hell I handled it. I just did.

It is funny...but over time..all the "quirks" you have - - to me now are so "THE NORM" that I barely notice them. I don't question why you must eat only macaroni and cheese where the noodles are not broken or have slits in them (as I sit picking out only good noodle pieces). I GET the fact that trying to sneak a non-name brand food item your way will fail every time. I understand that everything with you has to be so-so.....the french fries in the oven not too brown and yet not too under-baked. The cookies being baked just right....or else they go uneaten. I understand you cannot handle certain smells and textures .......certain sounds. ALL things in your world and now mine are like this. AND yet all these things that should seem like extremely pain in the butt things to deal with.....don't seem to bother me so much anymore if they did in the past. I just try to make your world and everything in it a bit more "tolerable" for you so you can just handle being IN the world.

So when asked "How the hell do you stand it?" I would have to say right back....."how the hell could I not?"

I cannot possible imagine a world without you and other children or adults like you in it. You are here for many reasons ...of this I am sure. You have a purpose. To say to someone with an autistic child "how the hell do you stand it?" is almost like saying to them "how in the hell do you handle having your child at all?" which sort of stings.

I am not mad at dad or others like him who have asked me this before or the doctors or teachers who upon hearing all your diagnoses say "oh no....that's a shame." I have never seeked a "CURE" for your autism....I only seek ways to make your world easier for you to handle so you can blossom into the being God created you to be. So you can make a difference.

Sure there were times I had very short patience with you....and I think that is probably what dad was talking about more than anything. How does one keep the patience and perseverance going? How can one do the same things over and over and over and tell you the same things over and over and over maybe hundreds or even thousands of times before one day that magic light bulb in your brain gets turned on and that new SYNAPSE/CONNECTION is made and you GET IT?

Did I ever question? I don't think so. If I did I imagine I soon realized there was no time for questions.....I just needed to understand that was just how you were...and that you would and will continue to change and grow...and learn things....and handle more things over time. Yes it can be exhausting at times Noah. Sometimes I wonder if you will ever get certain things and yet in the back of my mind at the same time I hear a voice telling me ....I know YOU WILL......maybe in a week.....maybe a month or maybe in a year.

I love you Noah.....

Mommy....who does what she has to do for you...because I am your mom ...and I love you. You are not a pain for me.....or a chore.....but a joy. I don't feel like I just can't stand being around you and I certainly don't see all the downsides to having a child with autism I guess. YES there are challenges.....maybe more than the average family....but I truly feel God blessed me with you.


UPDATE: You just came into my office....and jumped in my lap..asking me if tomorrow I would take you out and buy you lunch somewhere.....and I asked you if you could do something or sell something to make some extra money to help pay for all these eating out episodes. I asked you if there was something you could do to make some money (teasingly). You said "I" could just "give" you the money. THEN you put your head on my chest.....when you suddenly realized you were staring down at cleavage...something that has sparked interest in you recently.....and you began BLOWING air down my shirt....and that made me laugh and then you laughed ...

You stood up and we were both laughing so loudly......and you suddenly announced "THAT is what I could do!" And I asked you "What?" "You would blow air down women's chests for money" "WHO do you think you would be doing that with?" (as you kept struggling to get back at my chest to blow down my shirt some more)

TO which you promptly replied, "no....that just wouldn't be right!" ARE learning totally get the "inappropriateness" to that entire scenario!


motherofanothernoah said...

I have a son with autism and he's young and wild...You know who I can't stand are those people who you mentioned the "so sorry/how can you stand it people"

Betsy said...

There is just nothing bigger than a mother's heart!

And....the last paragraph...what a hoot! I remember my boys suddenly becoming aware that my chest looked a little different than all the other family members. They kept trying to take peaks down my shirt. LOL

Osh said...

what a wonderful post today Melinda, thank you.

Osh said...

what a wonderful post today Melinda, thank you.

Wanda said...

Oh what a delighful and insightful post dear...

I hung on every word and so understand about your Dad....God in his wisdom gave you Noah... How fortunate he is... and a blessing to you.

You bless my life with your honest and beautiful diary of your lives.

God Bless

Jack and Joann said...

I read your post and thought to myself that a mother's love comes the closest to the love that God must have for us. It is unconditional and asks for nothing in return.

Human love doesn't come close to God's love for us. It never has. It never will. We are after all humans and not God. So that explains your Dad's and others' comments.

But God loves us unconditionally with our weaknesses and failings in compassionate understanding. In return we need to try to love unconditionally all mankind even when our emotions say dislike or worst hate.

Another thought: a friend once said to explain why she is not bothered with homosexual priest who are good priest and NOT child molesters but just born with a homosexual orientation as well as a spiritual calling, "GOD DOES NOT MAKE JUNK!" So where a person with human failings may look and see imperfections God looks and sees a shining brillance and great gift. An example, would be those folks who were born without arms and hands but learn to drive a car and type with their feet! These are truly amazing gifted brilliant folks.

And to wrap up I think a mother's love comes the closest to God's love and ability to see a shining brillance and great gift.

So enjoy your gift of Noah and thank you for letting the world witness this type of unconditional mother's love.

And I do know this with the passing of time: love makes you happy and joyful and at peace while hate makes you bitter and unhappy and not at peace with yourself.

I know, it sounds like something out of the mouth of a Miss America applicant but this is what I believe.

I also want to echo what Wise Wanda stated. It has been a pleasure to read your blog to Noah. He is a little cutie! Merry Christmas.


Old Lady Lincoln said...

Noah is special and he has a very special Mom. Love you both very much.