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.......

18 years ago

Just a warning, my next couple of posts aren't going to be uplifting, happy posts. Life isn't always wonderful though. I am not writing this to be a Debbie Downer. I am doing this because talking/writing helps me cope.

September 20, 1996 was a day that I will NEVER forget. Let me go back to a few months before though. My mother developed headaches. Not just your regular, everyday headaches. I am talking sudden, bring you to your knees, in tears headaches. I witnessed several. She would be fine, then suddenly fall to her knees, holding her head, and just crying. She would lay down and eventually they would go away. Well, not completely go away, but enough to function. She was taking Excedrin every 4 hours, everyday, for months.

I still blame myself for not making her go to the doctor. I don't know why I feel guilty. I was only 14, had no clue how severe things were, and even if I had asked her she more than likely wouldn't have went. She was stubborn, and probably didn't realize how bad things were either. Or maybe she knew, but didn't tell me. I don't know. I often wonder because right after the headaches started she told me she never wanted to be on life support, "just let her go" were her words. I don't even remember how we got on that conversation, but I remember she was driving and the topic came up.

Finally, she decided enough was enough. She made an appointment with her doctor. She was suppose to go September 23rd. Yes, I still remember the date. You'll understand why later.

I was in 9th grade, and a friend and I had went to a football game. Mom (or someone, this part is fuzzy for some reason) picked us up. I remember her telling me she had another "episode" while I was at the game. This scared me because she was all alone when it happened (my dad worked nights at the time). She promised me she was okay, and she was able to handle it alone, and like normal, the pain eventually decreased and she was "okay."

I was in the bathroom, brushing my teeth, and getting ready for bed. She knocked on the door. I opened it and she said, "I am going to bed. Goodnight. I love you." Little did I know those would be the last words I heard her say. I gave her a kiss, and said, "I love you too." I am so thankful I had the opportunity to tell her I loved her because later on that night/morning life was about to throw a HUGE curve ball.

The chaotic (understatement of the year) birthday party!

Keegan turned one Friday. We went out to eat, and they sang Happy Birthday to him, and gave him a piece of carrot cake. Needless to say, he doesn't like carrot cake and wanted NOTHING to do with it.

 

Saturday we had his actual party. It was a NIGHTMARE. I wish I could say I was kidding, but I am not. :/ Let me start off by saying this though, Keegan has an ear infection. He has been on medicine for a few days, but still wasn't feeling 100%. Anywho, things started off good. We got there early and set up all his cute decorations.

 Thank you Sabrina for making his cake! It was beautiful (and yummy)!

Then the fun began. Gavin HATES loud noises. He goes into a full blown panic attack, and it is almost impossible to get him to calm down. Right before the party started, my BIL, decided to blow some leaves in the backyard. As soon as Gavin heard the leaf blower, WWIII broke out. Game over. He was upset for at least 90 minutes. He ran around crying, whining, and pacing. Nothing anyone did helped. Finally, I picked him up, held him tight, and started giving him a deep pressure massage all over. That calmed him down enough to not have to have me (or someone) right beside him at all times. 

I got Gavin calmed, and then Keegan decided it was his turn. Once again, I wish I could say I was kidding, but I am not. Keegan decided (right before presents and cake) that he didn't feel good, and wanted a nap. I thought maybe opening gifts and his smash cake would wake him up. Nope.... He did pretty good with the presents, at first. 

He quickly decided that wasn't fun and just wanted to walk around. Then....we got to the smash cake. I just knew he would LOVE it. He absolutely loved his smash cake at the photo shoot (I will post those pics later). Once again, I was wrong.

 

So, to the ones that messaged me apologizing for not attending, consider yourself lucky! Ha! Seriously, it was nothing but chaos. I had to laugh to keep from crying.I definitely will never forget his 1st birthday though. :)

At least one thing went right, his 1 year old photoshoot (taken BEFORE he became sick, so he was his regular happy self). My friend, Courtney, did an AMAZING job! I know I have already showed you one picture, but I have to share more. :)

Poor neglected blog

It seems like since I started back to work, I don't have time to sit down, much less write about life. Gavin has something everyday. Monday: OT, Tuesday: my friend/co worker who works in an inclusion pre-k/k room has graciously offered to work with Gavin (mainly speech) but she will do a little bit of everything, Wednesday: OT, Thursday: OT, Speech, AND music therapy, Friday: OT. Yeah, I wasn't kidding when I said I hardly have time to sit. I'm not complaining. I am SO grateful for all the help Gavin is receiving. I know I say this a lot, but it is true, and needs to be repeated.....WE ARE VERY BLESSED!

I finally got in touch with an ABA facility. They currently don't take his insurance, but are working on getting it finalized. The bad part, it could take months. Also, I need to get his hearing checked by an ENT doctor. I've been meaning to do this (just for peace of mind) and, well, to be honest, I haven't had time. He hasn't had a formal hearing test since he was 6 months old.

Gavin has been in school for a month now. He absolutely LOVES school. He gets so excited when he sees the bus. I *think* the only problem (that I am aware of) that he is having is he is VERY active. Some days worse than others. All in all, he is doing great though! I am so proud of him.

A couple of weeks ago I had the opportunity to meet an amazing lady:

For those of you that don't know her, this is Temple Grandin. You can learn more about her here.

I talked to her a few minutes, and asked a few questions about Gavin, mainly how to get him talking. As soon as she told me what to do, it was like, "Duh! Why didn't I think of that?!?" Her advice was to get him more speech therapy, NOT from therapists, but from anyone that is willing to volunteer their time to just hang out with him and talk to him. Also, she said make sure you tell him what he is doing wrong. Instead of just saying, "No, Gavin" say, "No, Gavin! Do not climb on the tv stand." "No, Gavin, we use our fork to eat that, not our hands." Like I said, common sense, but for some reason it never crossed my mind. I also bought her book, The Way I See It. I got her to autograph it. :) I haven't had time to read a lot (see above schedule), but what I have read, so far, has been so eye opening! Hearing her speak was an amazing opportunity, and helped me so much!

On a different note, Keegan will be one Friday! NOOOOO! How did that happen? It seems like just yesterday I was holding him for the first time.

Now, he is walking/running everywhere, picking on Gavin, trying to tackle Gavin and steal his toys, and babbling all day long. Seriously, I feel like I blinked and went from ^ that picture to this:

Almost as whiny as a sick man

HOW does Gavin know that I feel absolutely horrible, and I just want to go to bed? I say this because it seems like EVERY time I get sick, he decides that will be the night he doesn't want to sleep. It is almost 9:30 and he is wide awake. My ears hurt. My head hurts. My throat hurts, and I have went through almost a roll of toilet paper, wiping/blowing my nose. In case you can't figure it out, I am the whiniest sick person EVER. Well, I guess I should say I am the whiniest sick WOMEN ever. Even I can't whine as much as a sick man. ;)

 

Okay, I promise, no more whining. I'm going to continue to make fun of sick men. Why? Because it makes me feel a little better. Plus, I know Alan (my husband) will read this. He'll probably be the next one in the house to get sick. When he does, I will come back to this post and make him read it again. Ha! We do love each other, I promise. This is how our relationship is. We make fun of one another to show our love. HAHA!!!

 I got mad love for you Alan. If I didn't, I wouldn't have posted all these wonderful pictures. ;)

FYI: GAVIN IS STILL AWAKE! >.<

 

*headdesk*

Pray for my sanity, please! If bedtime doesn't hurry up, this momma may be running away to the beach. Actually, that's not a bad idea.... Seriously though, Gavin is HYPER! I mean insanely hyper. I'm talking, DRIVING ME UP THE WALL HYPER. I mean, making me "twitch" hyper.

I need Morgan Freeman reading a "certain" book to Gavin right now. Calm down, I am kidding. I would never read that to him. I am just tired and frustrated. I went shopping today because I needed a "break." Guess what the boys did with daddy? NAPPED! They took a freaking NAP! REALLY?!? They have been whiny and hyper for me, and the second I leave, they both calm down and nap...AT THE SAME TIME!

Just typing this out has made me feel better. Or maybe it's the fact that Gavin is now cuddling beside me instead of jumping on the couch, running around the room, skipping around the room, jumping up and down, and practicing his gymnastics.

Even though today has been chaotic, I wouldn't change it for the world. At the end of the day, I know it will eventually calm down, and I will be able to breathe. Well, not at this very second...because as I  am typing this, Keegan begins laughing, he is suppose to be sleeping.....

 

Like I said, I wouldn't change a thing. Yes, it gets stressful, but the good outweighs the bad, even on the roughest days. My children are my world, and I am truly blessed. 

 

Gavin's 1st full week of school

Gavin goes to school every Monday, Wednesday, and Thursday. Today, he completed his first full week. I couldn't be more proud.

 

 Music class

 

Today he actually stayed in his center, AND played! Usually he runs around the room like a wild man! I was shocked to see this picture!!! I am SO SO SO proud of him!

Not only did he complete his first week of school, he also rode the bus (for the first time ever). I was a little nervous about how he would react to being on a bus with people he didn't know. He LOVES it! 

 

 

The past couple of weeks have been hectic, but Gavin has been a trooper. He has OT (with Kelsey, at our house) every Wednesday and Friday. He has music therapy every Thursday with Mrs. Lowery. He goes to school 3 days a week (where he gets OT and speech.) He has an OT (occupational therapy) and ST (speech therapy) evaluation two days next week. After his evaluations, he'll start going to ST and OT outside the house and school, also. Yes, I know that's a lot, but I am going to do all I can to help him. I have been blessed with all this help, and I am not going to waste it!  I am also going to get him started on ABA (Applied Behavior Analysis) in the near future.

 Busy, busy, busy! Like I said, I will do ANYTHING to help Gavin. With that being said, though, if I see it's too much for him to handle we will chill a little. Honestly though, he is such a laid back child (most of the time), nothing really phases him. He just goes with the flow.

I can breathe a little easier knowing he is going to be okay with all the newness going on in his life. Will he have rough days? Absolutely! We all do! All we can do is take it one day at a time. :)

Could the oils actually be working?!?

$500 says I just jinxed myself. Anyone want to bet Gavin wakes up wired in the morning? HA!

Seriously though, I have had several people comment on how Gavin seemed to be more mellow the past few days. We've been doing the essential oils for about 2 weeks now. He gets "Calming" oil and "Brain" oil during the day, and "Calming" and "Lavender" at night. He is also still taking the vitamins (B6 and Magnesium). I was giving him both pills at breakfast, but, DUH, magnesium helps with sleep. Now, he gets it before bed. Honestly, I don't know if it's the oils, vitamins, both, or just a coincidence, but he has been more chilled out though. He DOES have his moments, I mean, come on, he is three! His moments use to be all day long, non stop though.

Kelsey, his OT came by yesterday, and he made eye contact with her for a very long time (minutes). This is HUGE for Gavin! Normally, people get a glance, and that is it! We are SO very thankful for Kelsey. She is AMAZING, and Gavin just loves her. It's hard for Gavin to really connect with someone he just met. He took to her almost instantly though! Just when we thought Gavin couldn't love her anymore than he already did, THIS happened:

He was in fruit loop heaven!

Kelsey put sensory toys in with some fruit loops, and he just went wild (as you can tell). He had so much fun with this. 

Then Aunt Brina brought by some cookies.....she loaded my kids with sugar....THEN LEFT! 

Of course, he was hyper for a while, but quickly calmed down. Honestly, I was shocked! I was expecting him to be up for a while. He was fine, Keegan, on the other hand....stayed up 2 HOURS past his bedtime! Thanks Sabrina! LOL It's all good. It's rare getting to spend time with JUST Keegan. It was a nice treat.