It's a Miracle!

A miracle occurred just now. Now, I realize some of you might not see this as a miracle, and that's okay. In this house, we celebrate every achievement, no matter how small it might seem. Tonight was HUGE though!

Every night it's the same routine, I change Gavin's diaper, get his toothbrush ready, chase him down, hold him down (while he screams bloody murder), and brush his teeth. He HATES it. Tonight went a little differently though. I came in with the toothbrush, he didn't move. I kept waiting on him to bolt as I got closer. Still, no movement. I bent down, ready to give "the calming speech" (that NEVER works). "It's okay Gavin, I promise I won't hurt you. We have to make your teeth clean and shiny." Anyway, I bent down and was getting ready to calm him, when the miracle occurred. He opened his mouth for me to brush his teeth.

 My next thought was, "Okay as soon as I start brushing, he will freak." That didn't happen either.
He sat there the entire time, and let me brush his teeth! The entire time I was cheering and bragging on him. Seeing that huge smile on his face (instead of the screaming) melted my heart. Way to go, Gavin!!!

What is it about Sunday?

Let me start by saying this, I LOVE my boys, they are my everything. Sometimes a momma just needs to vent though.

What is it about Sunday in this house???? EVERY Sunday is the same. Gavin wakes up WILD and stays that way ALL day. It is currently 8:15pm and he is running around the living room. He has done this all day, pretty much nonstop. The sleepier he gets, the worse it gets. When he gets sleepy, he is hyper AND whiny!

Not only do I have a hyper, whiny, three year old; I also have a (almost) 17 month old into EVERYTHING!

Why is every Sunday like this?!? Okay, Keegan is into everything everyday, and Gavin is wild everyday, but it's like on Sunday's they get together and say, "Okay it's Sunday, let's be 10x worse for mom. Hahaha!!!"

 

With all that being said, I still wouldn't trade them for anything. My house is chaos 99% of the time, I have to pray for strength MANY times a day, I am watching the wrinkles appear, and I can feel my hair turning gray. Even through the chaos, there is something else you will find at our house..... love and laughter. When I think I am to my breaking point, Gavin will run up to me and give me the biggest hug, and Keegan will sit beside me and put his head on my shoulder. At that very moment I realize just how blessed I am.

Update on Gavin

Wow, it has been a while since I have blogged. Between work, OT, ST, music therapy, and life....I haven't had time. I will give you a little update on Gavin. :)

Gavin is 3 1/2, and still isn't talking. About the only thing he can say is, "momma" and a FEW times he has said, "more momma." So, as far as speech, we haven't made much gain. I'm not giving up hope though. We are in the process of getting his hearing checked. He had a hearing test before, but it was recommended he get an ABR (brain scan hearing test) to make 100% sure his hearing is okay. This recommendation came from Glenwood Autism Center. We took him there a few weeks ago for a medical evaluation. They (the speech therapist and the psychologist) were concerned about the sounds he makes. In the words of the psychologist, "The sounds he is making aren't normal speech sounds. We hear those sounds come from children with hearing issues." So that is step 1. We are waiting on a referral to a hearing clinic.

We are still doing OT 4 times a week. He gets it at school, at a local OT center, and we have an OT that comes to the house 2 days a week. He has made SO much progress. Let you remind you of Gavin 6 months ago...

He couldn't do a puzzle (he just chewed on it)
Play-doh was a big NO (he ate it)
He couldn't kick a ball.
Brushing teeth and cutting nails was a nightmare!
He couldn't string beads. He would try, but struggled.
He didn't know how to play appropriately with toys. (He chewed on EVERYTHING.)
Any activity that included him getting his hands dirty (painting, shaving cream, ect) he would FREAK out!

Now:
LOVES puzzles, and is good at putting them together (simple puzzles, of course)
LOVES play-doh!
He can kick a ball, and he will catch it sometimes.
Still not a huge fan of brushing teeth, but it's getting better.
He will sit in my lap and let me cut his nails. I use to have to hold him down to do it.
He loves stringing beads. He loves stacking shapes on his stacking rod. He likes it so much that he gets MAD when Keegan tries to take it from him. :)
He knows how to play with most toys. I rarely see him chewing on anything anymore. He will occasionally, but will stop when I ask him to. 
....and today, we did this:

 

To most of you, this isn't a big deal. To me, this is HUGE! Gavin's hand is the red one. 6 months ago had we tried this, you'd see a red blob, me covered in paint, and paint all over him because he was freaking out. He whined for half a second when he realized what was about to happen. Then he opened his hand, let me paint it, and even held it open while I put it on the paper. He didn't scream, squirm, whine...nothing! I was in shock. I *might* have done the "Go, Gavin, Go" dance in the kitchen. ;) The dance includes lots of clapping, jumping up and down, shaking my booty, screaming, "GO GAVIN!!! WOOHOO!!!!" I was thrilled, he was looking at me like I had lost my mind though. 

Finally, he has made improvements at school, too. Is he still wild? Oh yeah! Does he still have to be watched like a hawk? Yep! Does he still need someone to hold his hand when they go somewhere? Definitely! BUT with that being said, he has improved. He plays in centers, and sometimes he switches centers instead of staying in the same one. He use to just run around the room like a wild monkey during center time. He will sit down to eat his snack. He listens better. I am sure there is more, I am just drawing a blank. Now with all THAT being said (his improvements) let me say this because I am NOT that naive parent that thinks he acts like that daily. I know Gavin! I know he still has days where he is WILD and out of control (his poor teachers lol). I know he still has days where he will ignore everything that is said, and I am sure there are days where snack is a nightmare. BUT the fact that he has days where he can follow directions, play right, and chill (even for 30 seconds) is AMAZING progress. We use to have ZERO days like that. 

Needless to say, I am so very proud of Gavin. He has come so far already, and I know he will continue to amaze me. He has some WONDERFUL people in his life that are helping him (and me). We are truly blessed!

Moments, not milestones

Autism has taught me a LOT, but one very important thing is to appreciate the small things. Not the best wording, so let me explain. Your "small things" are HUGE things to me. Gavin did two HUGE things tonight.

1. He played with a toy correctly. See what I mean? To those that don't have an autistic child this probably seems like no big deal. To me, it is. He just recently learned how to play with certain toys correctly. Usually he just chews on them. Tonight, he played with a toy (correctly) for about 5 minutes. Him focusing on ANYTHING that long is a big deal, but focusing AND playing with it the right way. WOW!

 

2. Bedtime is the same every night. 8 pm I put him to bed, tuck him in, and tell him, "Goodnight. Sweet dreams. I love you to the moon and back." Normally, he doesn't look at me when I say this, and just wants me to get out so he can go to sleep. He is definitely my child. HA! Tonight, though, he made eye contact, let me kiss him on the forehead, and even held his hand out so I could kiss his hand. (Don't ask, I have no clue. That is just something he likes for me to do.) My heart melted! 

I just don't understand

I don't understand. I thought I had this grieving process under control. By grieving, I mean the thought of what Gavin was going to be like, the things he would accomplish before his diagnosis. I have done great, and thought I finally came to the realization that things would be different, and that's okay.

Obviously, I was wrong. I was putting him to bed, and this sadness just came over me. The "what ifs" came back. What if he never talks? What if I can't/don't know how to handle his future? What if he is never able to care for himself independently? What will happen to him when Alan and I are gone? What if Keegan has autism too? WHY???

Why am I suddenly feeling the same way I felt three months ago when we received his diagnosis? This makes no sense. I am sitting here, tears rolling down my cheeks. Why am I telling you this? NOT for you to feel sorry for me. I am telling you this because I need to. I'm hoping getting it out, and admitting that I am struggling helps me deal with how I am feeling right now. I try to be strong most of the time, and I think I do a pretty good job....MOST OF THE TIME.

I could understand feeling overwhelmed if it had been a rough day, but it hasn't. Nothing has changed. Gavin is still the same happy, loving, caring boy. All day today he would run up to me and give me a great big hug, and cuddle with me for a minute.

I just don't understand, and maybe I am not suppose to understand....

"Goodnight. I love you."

I have thought long and hard about this post. What exactly do I want to say? Part of me wants to tell it like it is, the anger, the sadness, the depression. Then, I think about mom, and what SHE would want me to say. She wouldn't want me dwelling on her death. So after thinking all day about this....here we go.

Mom passed away Monday, September 23, 1996. I have spent 18 years talking about how angry I was because God took her from me. Enough is enough. Yes, I still miss her, more than words can say. Yes, I still have angry moments. YES, I still question WHY this had to happen.

Instead of dwelling on all the questions I still have. Tomorrow, I am going to think about the good times I had with her. She was my best friend and I am blessed with some wonderful memories.

I still have the video of her when I put her hair in dreadlocks.

I still remember the snake hanging over the door frame and hitting her in the head when she walked outside.

I remember her accidentally wearing her house shoes out in public.

I remember spending hours brushing her hair.

I was such a mamma's girl. I was joined at her hip, and hated being without her. I laugh and say Keegan is my payback because he is the same way. He has to be right next to me all the time.

I remember going into her room a million times (always scared of something lol) and she never once got mad. I either crawled in bed with her or she laid with me until I fell back asleep.

I remember the entire family going to the Christmas Tree Farm and cutting down a tree.

I remember her scratching my back, and how relaxed and safe I felt when she did it.

I could go on and on, but the greatest memory I have, are her last words to me. "Goodnight. I love you."

September 21-22, 1996

If you haven't read my last post, you might want to start there first.

I get pretty detailed in this post. If you are easily bothered, you might not want to read. 

I had just told mom goodnight, and I soon went to bed myself. My dad came home around 2:00 am (I think, once again another fuzzy part). Around 4 am (maybe...) I awoke to dad yelling, "Linda! Linda! Hey!" I ran to their bedroom door, and just stood there. I was afraid to go inside. Then my dad came running out. I asked him what was wrong, he said, "Something is wrong with mom." I ran in the bedroom. She was laying in bed, her eyes partly open, and her head looked swollen. I yelled, and then took off running.

My sister lived next door. I ran to her house and just started banging on the house, screaming, "Tracy, get up!" It took her a while to hear me. Finally she came running outside, and I told her something was wrong with mom. By the time we got back to the house, the ambulance was there and they were loading her into the back. I don't remember much after that, but it is weird how small things (18 years later) still stick out in my mind. I remember seeing the lines in the carpet where they had rolled the gurney to her bedroom. That imagine haunts me still.

The next 18 hours or so is a blur. I think I have blocked it out because it was so painful. I will talk about what I remember though. I remember arriving at the hospital (I don't remember how, but I remember walking in the doors). My other sister, Shelley, was in Gulf Shores and I remember someone saying, "Shelley is on her way." I don't know how long we were there before we knew anything. It might have been a short time, maybe hours. The only other thing I remember are the words "possible brain aneurysm, transferring her to another hospital."

I *think* I spent the night with my friend that night. I honestly don't remember. I don't remember anything else until the next morning. I walked into her ICU room, and instantly walked right back out. Seeing someone you love, lifeless, is hard at any age, but at 14, it was terrifying. She appeared to be having seizures. I am not sure what was going on (the nurses told me, I just don't remember). All I know is that her entire body was shaking. I refused to go back there anymore. Finally, my sisters assured me the shaking had stopped, and she looked like she was just sleeping.....with lots of tubes. I walked in there again, and instantly thought about our conversation, in the car, a few months ago. The words, "let me go" kept echoing in my mind.

The doctor confirmed she had an aneurysm and it was in a part of her brain that couldn't be operated on. No hope was given. I didn't give up though. I went in there as often as possible, I talked to her, played with her hair, told her to fight. I was young and naive, I guess.

September 21 and 22nd were just the same things being said, just different days.

"Doesn't look good."
"She'll be a vegetable"
"No change"

I remember going into the bathroom, on that nasty floor, and falling to my knees, praying my heart out to God. "Please don't take her. I am only 14! This isn't fair!!! Why are you doing this to our family?" Then sometimes I would pray, "Please, Please, Please don't take her. I love her so much. She is my best friend. I need her! She has to see me graduate high school and college, watch me walk down the aisle, start a family of my own."  Other times, I simply just prayed, "Please, please, please!"

I stopped eating and drinking. My sister tried to force breakfast down me, and I spit it back out. I lost a total of 30 lbs in 72 hours. Don't ask me how, I didn't think that was possible, but I remember what I weighed before all this happened and when I weighed on the 23rd, I was 30 lbs lighter. 

September 23, 1996.......