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Friday, August 24, 2012

Wants and Needs..Seperating the Two.

     Everyone wants a "normal" child. This is what we expect when we take our pregnancy tests and find out we are having a new bundle of joy. You go through phases off and on wondering if everything is ok, what he/she will be like, if he/she will be healthy and pretty and smart...etc etc. You want all these things for your child. You day dream about what it will be like and how much you want time to speed up so you can be with them. I wanted all these things, with both my children. I still sit here and think about all the things Luke wont be able to do, what I wish he could do..what I WANT for, making friends, playing with toys correctly, talking, loving his sister, playing football, going to prom...this list can go on for quite some time.

     One of the hard parts for me and still is is accepting that a lot of these things will most likely never happen. I think about it a lot, maybe more than I should especially on rougher days. For the most part Lukas doesn't have a lot wants that I can tell. He is usually very simple, wants something to drink, to watch a movie, something to eat, a diaper change. I have also come to learn is what he needs. He needs me to be strong for him, to advocate for him, to understand his different cries and moans, to have patience, acceptance and most of all love. A lot of people wants things they will never have..a million dollars would be freaking awesome but I don't play the lottery so guess money! When it comes to my sons Autism, I need to accept it. Its ok to mourn over things that we thought were going to be, its part of the grieving process and human nature but we can't dwell on it.

     Although he has Autism, he loves me very much and for the most part he seems happy. Of course we have rough days but they pass. I often feel helpless because I don't know what causes bad days but I have accepted that no matter how many good days we have, bad days are sure to come and like the weather they too shall pass. No he doesn't play correctly, he is obsessed with DVDs and wants to look at them, hold them, sometimes break them on accident but its what he likes. He will watch the same movie for days then get sick of it and go on to the next. Some times he plays with trains but he doesn't really play the way you think. He likes them a lot, holds them in his hands and puts his mouth on them. He is very much about sensory, mouthing is a big thing with him as well as touch. He doesn't like toys that make tons of noise, he has to put his head down and close his eyes..there is one exception to this rule..his pull string Woody doll from Toy Story. That is about the only toy he plays with correctly. Does this make me sad, yes of course...I would love to play with other kids, pretend play or just NOT see things going flying across a room in my house but it is what it is.

     He is perfectly happy not doing those things though. He doesn't have wants the same way other children do, he is wired a bit differently. Aren't we all though? I know we have to encourage him to want to do these things and I hope that at some point he can but its not what he NEEDS right now. Maybe I stand alone on this opinion and that will be fine. I feel like a stand alone on a lot of things. I think its more of what society thinks is normal and what we must try to force our children to conform to. If he wants to be different let him, I say. Ours kids are who they are, we love them any way they come through good times and bad. We say all the time as adults, if we have to change who we are to make other people accept and love us, then they aren't worth having in our lives. I think that should go with children as well. Some people don't see it this way and that's fine, because they want what they want after all.

     There is a big difference between what we want and what we need. For the most part I know my sons needs. He needs me to be there and love him for who he is. He is special just like my daughter is special. All kids are unique and special. I think if everyone loved a little more and was a lot less critical on things they don't understand or don't think is normal we could all see a big change.

Thursday, August 9, 2012

Where is a Genie in a Bottle When You Need One?

     I have said this before, you will probably here me say it a million more...Luke not being able to tell me what is wrong is the worst. There have been many occasions where I feel helpless and I just say over and over, please just tell me whats wrong! Although I have high hopes for him getting his speech back and love when he has his good phases and babbles and talks, for right now he is nonverbal. We get nights where he just wakes up screaming to the high heavens. Nothing I can do can calm him, he can't have anything touch him, its not pain because I give him Tylenol right off the bat. Its like he wants to literally crawl out of his skin. My voice sometimes soothes as well as my touch, other times its like I am the devil. If I speak or touch him it sends him into an even worse tantrum. I get hit often, when I catch his arm when he goes to slap me, I then have to dodge him biting. If he cant get one of those off, it resorts to kicking. I give him lots of space then but sometimes he comes after me. I have to tell him no hit, not nice and just try to hug and kiss him.
     Again today, he was sleeping on the couch, peacefully and then bam! He gets up, falls to the floor and starts screaming. He immediately tears off his diaper and lays there crying. I go over to him, I don't touch at first but I say hey hey hey mommas boy whats wrong? Everything is alright, mommas here and I love you. All in all it took me almost a hour to calm him,which is good compared to some nights when he screams for 3-4 hours straight. How I wish so bad he could say...

"Momma I want to go outside".
"Momma I don't feel good".
"Hey I love you".
"Can I have this to eat"?
"This is really bothering me".

The list goes on and on. I couldn't imagine how frustrating it must be to not be able talk. To explain all the things going through your head and how you feel. I sit there helpless time and time again, wishing for someone to grant me one wish...just one! Let my baby talk and let him be able to tell me whats wrong. I do what I can for him. I am always playing the guessing game, do I touch him? Can I talk or will that make him upset? Maybe a song...hmm no he is extremely mad now. Is he in pain? Hungry? Thirsty? Want a different movie? Did I make him the wrong thing to eat? Most days I run off spurts of energy. I don't know how I do it, all I know is that I must do it. I don't have another choice. So in closing...if anyone ever finds a Genie in a bottle, you can have 2 of the wishes. I just need one, that's all I ask. For now I pray to the big man upstairs and await my one wish coming true.

Tuesday, August 7, 2012

Good Always Out Weighs the Bad

    There are many bad times in the life of a mom who has an Autistic child. No one can really prepare you for all the things you will go through together. I mostly write on here when I can't keep my feeling in anymore on a certain situation, it's usually negative so I decided its time to write a more positive one. Things have been wonderful lately with Lukas. With the exception of a few nights here or there, he has been in such a wonderful mood. I want to think its because we got him a therapy swing, which he does not ever stay out of lol. I would really like more babbling out of him but I understand it's hard for him, he can go months without saying anything but a moan. The laughter I have been getting from him lately trumps a lot of those feelings though.
    So much eye contact and smiling lately, he is quick to crack a smile and laugh so hard. People laugh all the time but when my little guy laughs and I mean really laughs its the best sound in the world. He has been wanting to play more, which is amazing because he used to play all the time with toys and now all he does is throw things. He has been picking up his trains and making noises. This might not seem like a huge deal but for us it is. He is starting to play appropriately instead of throwing, believe me toys aren't cheap and this kid can throw like no other.
    I had been so worried that he would regress over the summer on his down time and with transitioning to a different school. So much worry and stress for nothing. He is really doing well at his new school, dropping him off is still rough, transitions are never easy. When I go to get him it makes it all better. He comes out smiling and looking for me, he immediately looks to the left because this is where I usually park. They let him go and he comes running to me with the biggest smile and always welcomes me with a hug and most the time a kiss. I feel truly grateful to God for his affection towards me. I know a lot ASD kids don't show affection at all, not because they don't like anyone but because they just don't know how. I read another blog earlier today and she was talking about all the things that come along with Autism and what they don't tell you. One thing really caught my eye though, she said when she gets hugs, its like holding your baby in your arms for the first time all over again. And it truly is. It makes my day to get hugs and smiles.
    I am sure there will be many more bad days to come but there will always be good days. Progress is slow but you know the turtle can win the race against the hare. We will get there and overcome a lot of thing. As long as I have my kids by my side I am the luckiest person alive.

Monday, August 6, 2012

First Time for Everything

    Thing have been going pretty good here lately. We got Lukes' vest and swing in. He isnt too crazy about the SPIO but he sure does love his swing. Meltdowns have been minimal, he has been much happier and smiling so big it lights up the room. Past few nights have been hard, he is waking up screaming again and we have no clue what is wrong. Nothing I do can soothe him, I cant touch him or talk to him. Everything makes it much worse. Worst part about his Autism so far is the inability to communicate with us. It has to be so frustrating and sad to not be able to talk. We always get past the storms though, there will be many bumps in the road and there is always coffee!
    This past Sunday we went to an aquarium, Luke loves water and fish so much. It is very relaxing for him. We did have a very nice time but one comment almost ruined it all for me. I know there are many more like this, and looks like this to come but it was my first. It took me by suprise and at first I was upset but I didnt want to let it ruin my experience. See on Saturdays and Sundays the aquarium only allowes strollers from 3p.m to close (I assume its due to them being busier), but it also clearly states that Special Needs Strollers are always welcome. Now I know my son doesnt "look" Autistic, who does? Its not a disease. So we go at open, 10 a.m. and the first lady smiles at me and says nothing about the stroller. We get to the next area right before you buy the tickets and the young lady says "We have a rule about strollers on Saturday and Sundays. They are only permitted after 3 p.m.".

Me-"Yes I know but your website clearly says that you allow special needs strollers at any time".

Her-"Well yea for actual special needs". (Que the eye rolling and gives me a look like I am an idiot)

Now here is my logic, if I brought up the fact that I looked into it and brought up that special needs strollers are welcome and I bring my son in a small stroller, then why are you, the lady who deals with the public going to roll your eyes at me and act like I am a moron. Like I said I know my son doesn't "look" Autistic or special needs, I didn't know they had a special look. I calmly said to her, "He is Autistic, I need him in the stroller". She immediately said sorry, a few times. I told her it was fine but for his safety and anxiety, I need him to be in the stroller. She again says sorry.
    Let me say this, I am not mad at her. Its not her fault and once again, Autism doesn't have a "look". It was just the shock of her rolling her eyes at me and looking at him like, there isn't a damn thing wrong with him and I am a moron. This is very mild compared to some of the things I have read from other mothers about looks and comments. I know I got off easy but I guess it finally hit home in a way for me. Once I got home I quickly looked up my go to gal pal who has a son on the spectrum and vented to her. I like to talk to people who really get me and know where I come from and have experienced it first hand because it makes me feel so much better. She gave me some great advice, to get a medical bracelet for him and to call ahead to places and tell them we are coming and the situation with Luke. I would have never thought of that and its brilliant. I haven't had a lot of experience in dealing with all this yet and she has the best advice always. I would be truly lost without her.
    So please all my readers, do me one favor. When you think a child is spoiled in the store or having a fit or they look different or act different, don't judge. Please just smile and carry on. Understanding and acceptance means the world to us. We all need to feel loved and accepted any where we go. We often feel left out and talked about and it hurts. I hope in meeting me, the lady will not be so quick to roll her eyes or hopefully take a different approach to someone who is bringing in a stroller. Education is our best tool. Its what I must do for him, so when he grows up things will be different and easier.