Looking Back

     After reading two blogs from one of my favorite bloggers yesterday about regression and how it started for his son it definitely hit close to home. He was having a down phase where he is looking back and reflecting on what once was. As I read his blog all those feeling I have been trying to get over for the past year resurfaced for me. In a way it makes me feel comforted that it took him years to get over and he still isn't at peace with it..makes me feel like I am not crazy for thinking the things that I do. As much as I try to not think about what once was..laying in bed last night my mind didn't care, it went there and stayed and now I HAVE to write about it. This is probably going to be a long one and scatter brained so bare with me if you choose to read it all.


     When Luke was born, he was a super healthy, full term 8 lbs 3.3oz 21in long kiddo. He has always grown like a weed. (Now looking back I see signs from birth of Autism but then I think to myself..not everything can be Autism..you're crazy...he was just a difficult baby) Luke NEVER slept..ever!!!! The only times he would sleep is if he was snuggled up with me or his father rocking him in a recliner all night. As soon as any light noise or movement happened bam!! Wide awake. I honestly didn't sleep for about a year. Now don't get me wrong when he was awake he was happy for the most part unless over exhausted (we just let him sleep on us at that point so we could get some sleep). He smiled, loved everyone, ate everything played with toys. He hit all his milestones perfectly. He was crawling at 5 months, walking at 11. Babbling here or there, he could say momma, dadda, ball..
He was the biggest flirt, if you had a pair of boobies he was all over you (he was breastfed for a year). He would tilt his head and give you a wicked grin, hugs and kisses, played with his sister a lot.

 

 

     Here comes the changes, it happened around 15-18 months and it was winter time. I distinctly remember sitting on the couch talking to my mom and saying..I think Luke is going to have a stutter. He went from saying momma with no issues to mmmmm moooom mmmmmmmmmmomma...then in a month it was nothing at all. Just a whinny humm that lasted for over a year (laughing was even hard to get out of him). Anyone that came over was given the look of death and he started to get upset (eventually he didn't notice anyone who came in and if he did he was very upset about it). No one could touch him or get into his space. He started to freak out anytime we took him ANYWHERE. There was no longer a smile on his face at all..ever. He started walking on his tip toes, not playing with toys, throwing things, hitting. He would sit in "his" recliner all day and rock. Wanted to do nothing but watch movies all day. He went from being my personal garbage disposal to not wanting to eat anything. He became very picky with what he drank and ate. His attitude toward his sister was awful, pulling her hair, slapping her, high pitched screams if she even came near him. By the time spring came around I had a completely different child. If we took him outside every noise sent him into a spiral, he was terrified of the grass, refused to go out. It was be pure torture to him. All the while me and my husband were like whats going on? We had no idea, went for his 18mo well child check, told his peds doc. She said lets see how he is doing in another 6 months. I was always told not to compare kids, they all develop differently. Emma is very smart and a little ahead of the game. I thought he was going through a stubborn boy phase. Most the time he started to look like this...

    We took him to a 4th of July parade with the family. Thinking it would be amazing. It was 96 degrees out, Luke started vomiting everywhere and screaming. I had to carry him about 1/2 mile back to my moms house. Little did I know my mother had been doing research, she thought he could have been Autistic but wanted to get the facts together first. How do you tell your daughter that you think her son is Autistic anyway? After the 4th she really thought he was then. A month passed, I was going to school full time at night, preparing for our wedding (a formal ceremony for the family that we never did) and I was busy. So my mom didn't bring it up. Two days after the wedding which was on Lukes 2nd bday he had his 2 year well child check. Now I was nervous about this already because I knew something was off but I had no clue what it was. Telling his peds doc what was going on, she said brb I am going to have you answer some questions for me (not telling me what exactly it was for). I assumed it was a checklist just like we had done for our daughter in the past. It was the MCHAT (prescreening for Autism) He hit all the critical and I think 23/24 out of the 26 red flags on there. She broke the news to me..I was in shock..numb..couldn't even think or wrap my head around it. She gave us a referral to the peds neurologist (which I have written about before and the diagnosing process) and a referral to the county Help Me Grow Program. I walked out of there a mess. I didn't really break down until I got out into my car. First person I called was my mother..and she proceeded to tell me how she didn't know how to tell me and that she loves me and all the research she has been doing and how she wishes she had talked to me about it before I went to the doctors. I am not mad nor was I ever at my mother. I think its best the way I learned but that's just my opinion. Then we started our journey in getting him diagnosed and starting early intervention services.

     I still sit here on my rougher days and think of how he was. Soo smart (which he still is don't get my wrong, he just learns different and such now) how loving he was to everyone, how he enjoyed so much just sitting in the living room giggling and playing with his toys. There is part of me that kind of feels like a lost a child in a way..its very hard to explain. Its not what I intended for him, for us. Then the questions in my head came...
Will he ever be "Lukas" again..Will he be able to show love like he once did..Will he be able to play sports..go to prom..have a girlfriend..make friends..be OK when we are gone.... 

     I don't know how to end this. I still think about this from time to time. I will be the first to admit that I am not over his diagnosis. I do however love him with all my heart, he has made some great progress and I will be there and do what I can for him to help him in life. Since his early intervention at Happy Days School he is now looking a lot like this everyday...