Dinner, What's That?

     As I am sitting here thinking of what to do for dinner I suddenly have the thought of why bother?! This is not your typical house where everyone sits down to enjoy a meal together. I have 2 picky ass eaters in my house that I have to make separate meals for...a piece..they don't even enjoy the same things to eat! I ask my husband "What do you want for dinner tonight"?
                                                   " I don't care"....every night!!!!!!

     What is this crazy thing called dinner you speak of? I do not understand what this is?! Ohh a family all sitting down at the table to eat at a certain time in the evening! HAHA Is that some joke...
It must be because in this house that doesn't exist!

     Ohh Emma you want a bowl of cereal for dinner...at 3:30? Sure why not!
     Luke..you want to eat 2 bites of corn dog at 9:30 at night...sure?! No problem.
     Roger I made something to eat, wake your ass up and eat!!!! LOL

     I don't know what dinner is like at your house but I cant even call it dinner here. Luke NEVER eats at the table, Emma always eats at odd hours and is always grazing. So I say..What is the point! I don't think I am making dinner tonight! You picky people I live with can figure it out! This mom is on strike for now..

Of course until Emma goes...Momma can I have something to eat please, I am hungry? Ohhh sure what do you want.
Luke starts going mmmmm mmmmmm mmm..ok lets pull out the 3 bags from the freezer for you to choose from...(Chicken Fries, Chicken Patties, or Corn Dogs)

How is dinner at your house? =)

Finding Acceptance

     Sometimes I really feel like an outsider in the world along with my son. I was always very picky about my friends and preferred to be in small groups but I DID have friends. I have one best friend from high school left...my only friend of that sort really.

     Now that Luke has Autism I feel that is difficult to have friends/make news ones. I am not close to anyone in my family besides my mother and stepfather.( This is not by choice, I think its just the way it is) Of course they get Luke the best, put effort into research, understand his meltdowns, ask questions about his behavior. That's why I started this blog, its much easier to write about how I feel than actually talk to people about it. I learned that I can connect with awesome people over the Internet who have very similar lives to ours. Is it reaching as many people as I would hope? No...but I am fortunate for those who take time out of their day to include my family into their day.

      This is all about honesty, this is the way I am feeling so please don't be harsh...I woke up with 'one of those kinda days with a heavy heart'. I feel that because I am a young mother of a child who is only 3 and on the spectrum I don't get..hmm looking for words...I guess maybe the same 'treatment' (that's not word I am looking for either) as some of the older moms with older kids and more experience. Now this doesn't speak to everyone..please! There are quite a few of you that I know truly understand us and read my page and my facebook page about Lukas and I. http://www.facebook.com/pages/Day-Dreams-From-An-Autistic-Mind/455390541167384

       I guess maybe when it comes down to it...its jealousy of other mothers. I wish I had as many people to relate to as them and share my stories with. I am sooo extremely happy for them (!!!!!), don't get my wrong, I guess I just wish I had that since I am pretty much alone when it comes to immediate surroundings. Everyone wants acceptance..I feel I need to fit in somewhere now more than ever with Luke.

     Now done with the sappy things..I feel like I might make some mad or loose some people after stating those things so I want to talk about the amazing acceptance I have found. There are truly amazing people out there who understand you, go through a lot of the things you do/did and give advice or share their stories. This is when I feel most at home and comforted. One thing I am truly grateful for when it comes to Lukes Autism is the people it has brought into our lives. His Early Intervention Team at Happy Days School was absolutely a God send. I have met a lady named Debra and her amazing son Sam (she used to go to school with my mom). She got me through my darkest of days. Anytime I had to vent, or questions or needed advice she is very quick to respond. There is soo much of Sam that I see in my little Lukas too.

     There are peoples blogs I have now been able to follow and comment on. If its a sad message/update I hurt with them. I know exactly how it feels to go through most of this stuff. When they are soo happy about some progress (whether it be big or small) I am genuinely happy for them because I too know how exciting and big it is for any progress. There is no judgement to pass or ill thoughts about anyone. Its jut love and acceptance and understanding. Hopefully as the days go on I will be able to reach more people to share my stories with, meet more amazing people who will stay in our hearts forever and find acceptance from the world.

    In an off tangent...as I was mowing the grass the other day I was thinking about Autism, about the 1 in 88 now. You know how people say "normal" to you all the time? Well if this keeps becoming more prevalent in ours kids..us Autism families are going to be the normal. Can you imagine that? We would have the normal kids and the typical kids would be thought of as the weird ones? I hope this doesn't happen, I don't wish Autism on anyone. Autism is a rough life style. I wish they could find something concrete but ohh how the tables would turn. People need to accept what is, don't speak if you don't know, have compassion for those suffering and try to understand that which they do comprehend.

    I am done..hopefully I didn't make anyone mad today...that was not the purpose. Just needed to write my feelings down.

Stims Here, Stims There, Stims Are Everywhere!

     I don't know what is going on with Luke lately but his flapping and stimming are on overdrive the past few days. I thought maybe it was because he was constipated but we fixed that problem and the effect was only minimal. Wondering if maybe the weather change has something to do with it? You know these kids have super senses and notice things we don't. Maybe the cool weather is effecting him. I don't believe in the "Quiet Hands" approach when it comes to stimming. If he needs to do it...there is a reason!! This is my personal opinion - if its not disrupting behavior, it has a purpose and its calming him down then its allowed. Although we might not be able to see it or understand there is something causing this.
 
     As soon as he woke up this morning it was right to jerking his arm about. This doesn't upset me because he doesn't seem upset or distraught, it only makes me more curious. What I wouldn't do to have 5 minutes inside his brain, to see what he sees, feel what he feels, how he perceives the world, what he laughs at in the car..driving down the road when absolutely NOTHING is going on! Ohh what it would be to understand him better. I do know him better than anyone but do I understand everything, hell no! I wish I did and if you have a trick for doing so please let me in =) It would be greatly appreciated!

     On a completely other note though I have been getting him in his room for a few minutes each day to do some activities. We sit on the floor and put shapes in their slots, do stacking stars and I make him stack four blocks up and then repeat all those over once. This is a big deal for him, he doesn't know how to play with those kinds of things, which I am sure most/all of you can relate too. He usually just carries around an object or two to tap on things and make noises with. Its his sisters camera and a broken Toy Story flashlight right now. He has also started piling stuff (whatever he can find) on to the TV stand and you cannot touch it!!!

    He gets very offended if you take any of it away. I have a 2 minute video of him, methodically placing all the stuff he finds and where to put it and a video of my husband trying to take something away. I am not sure how to handle this..if its a good or bad thing? Please let me know!!! I think its his way of play and he enjoys it but I am not sure if I should try to stop it because it doesn't have a purpose? Either way its connected with his Stimming because when his Stims get bad he does this. Maybe its his way of having order as he sees it? Not sure =) Either way I love him. Any comments are always welcome please =)

Good Vs. Bad

     You can never tell what is going to happen in my house. Everyday is a new day, new challenges, new things to smile about, new things to hate...each day brings something new. Since the middle of July when we bought him his therapy swing for home, Luke has been on a pretty god roll. Very little meltdowns, over all pretty happy. Recently he had an amazing day, full of peeing in the potty, playing with toys, said Momma 3 times, let me brush his teeth, cut his nails with no/barely any fuss. I wish good days like that can last. I don't know what makes those exceptional days happen but I love it and I wish everyday could be as such. The reality is...its not going to last.

     Luke goes through phases constantly. Usually in his "up" phase he has some speech (momma,dadda,pop,that) nothing major but its music to my ears. He will try new things, be good when we go out some where, meltdowns and tantrums (yes he does have tantrums too) are minimal. I love good phases, on a positive point, good phases are lasting a lot longer now. Bad says only seem to be here and there and are only a day/few days long.

     It makes it that much sweeter when he is in his "up" phase (although when they end is heart breaking). I get to appreciate everything so much more. The smile on his face can warm my heart in .5 seconds and erase all the anger and frustration and exhaustion. One thing I wish I knew though, what makes good days and bad days? Everyone has a bad day, I have to remind myself of that. I have bad days more than the average person but I am under a bit of stress. I still feel guilt everyday about his diagnosis...I think I did something to him which in reality no one knows what causes it and I am just still in my grieving process I suppose? I dunno maybe I am just bat shit crazy =P  .I am all over the place...I wish I could make his extremely good days last but it seems after a good day like that bad days are always there the next day. I wonder if its actually draining and tiring on him to have a good day? I thought maybe he was getting sick this time and the is enough means for an awful attitude with anyone.

     So what does mommy do...I spike his milk with melatonin so he can get a good night rest which he did and so far today seems like its going a lot better than yesterday. His eye is looking so much better, he looks rested, his nose isn't running and he was out here swinging in his therapy swing at 5:30 this morning watching Mickey Mouse on the iPad. Too fully appreciate ups, I guess you have to go through the downs. I just wish I knew a trigger so he could go through ups better and longer. I look back over the past year and see how far he has come and just WOW! He is a completely different kid so I need to step back and get prospective once in awhile and look at the whole picture.

     I guess maybe this post is just ramblings on my inner thoughts. I reread this and say hmm I haven't gotten to the point I originally wanted to make but I cant seem to get there. Putting thoughts into writing today aren't coming easily lol. So for now, I will drink my coffee..surf the web while they watch their morning cartoons and enjoy the new day as it unfolds before my eyes.

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...

Little to You, Huge to Me

     Any progress whether it be little or big is always huge in our house. Yesterday Luke pointed to two..yes TWO body parts when asked!! This is big for numerous reason 1) he listened to what I said 2) he responded to what I said 3) he knew where these body parts were. Most kids can point to body parts on demand pretty early. I have been trying to get Luke to point to his nose or mine for well over a year and come to find out he knows where it is and my ears. This is a big victory for me, it warms my heart. Now he wont do it every time I ask but I have noticed he only does it when he is wearing his SPIO. He never lost his speech while he was wearing this at Happy Days and now that we got his bigger one this past Friday he is starting to babble here and there again. I really think this is something huge for him. I think it helps him calm is sensory overload within and concentrate.
Today he let me put it on him with minimal whining and he wore it for 4 straight hours before I took it off him. I chose to take it off him because everyone needs a break every once in a while =)

    I think people with typical kids take a lot of little things for granted. Accuse me- guilty as charged!! I do this with my daughter as well. I want to tell her to shut her mouth all the time cause that girl can make a rock want to go hide with her mouth sometimes! lol She can go a million miles a minute about the same thing over and over. When I notice I am doing this I try to make extra effort to think of how it could be, how I wish and pray everyday that Luke could talk my ear off until I was ripping out my hair!!!!! No joke if his first sentence was B*tch get my a sip cup now! I would do a happy dance!!! But yet I tell my daughter to hush all the time! Hypocrite I know but I am human and I am working on it. Emma is smart as a whip and picks things up so quickly. I never realize just how smart she is until I feel guilty. She is am amazing little girl and I love her to pieces. Today she asked me if her little brother could go spend the day with her at Grammies house. It warms my heart, I know she loves him dearly. Which brings me to another little progression rant I will go into...

     Luke has been letting Emma love on him here and there. NEVER take LOVE for granted. Emma and Little Man used to be soo close before the changes happened. She loved him and he did her the same. She doesn't get whats going on, I explain he is different-her response is "Yea Mom I am different too" Of course you are hunny hahaha. Luke is usually pretty mean to Emma, she is loud in your face kinda girl. I like to think she gets that from her Daddies side of the family! HA! (I used to be super loud, dramatic and crazy...sometimes still am =)  )  The past few days Luke has let Emma hug him and kiss him. She tells him when he is getting upset about school that its ok and he is safe! AWE! (cue teary eyed mom) She grabs his hand and walks with him to the Teachers awaiting their arrival. Maybe there is hope after all. The way he has been to her for almost a year and a half I was starting to wonder if he would ever show her love. I don't say if he would love her because I am so sure he does but she is his personal sensory overload from hell lol. I am babbling again...

     Any whose its...needless to say much progress for us in the past week. He did amazing at his new school, he is babbling somewhat again, letting his sister love him, pointing, listening..so many small things leading up to huge progress. Always love your kiddos and appreciate everything they can do, no matter how small it is.

Lets Give it a Whirl?!

     So my son is terribly picky with his eating. It usually consists of corndogs, french bread pizza(even that we are having issues with now), chicken fries and chicken patties, and maybe the occasional yogurt. Well now he has decided that he doesnt want to eat much of that anymore but yet refuses to try anything new! What the hell man! Now we have to go through this guessing game everytime we think he is hungry. Of course he will slap one thing (because he cant speak) to let us now which he would perfer to eat and then we gladly make it...then he wont touch it! My daughter does this as well, she is  grazer, cant get her to eat a big meal but will want 25 different things during the day and its super annoying lol! So now my husband and I have a similar convo everytime its time to try to feed him...
  "What do you think he wants"
  "What did he eat for lunch"
  "Can you help me figure it out"

     Not going to lie, it gets old quick but what other option do we have? We have to try to give him something. Of course if everything was allowed in Lukes own little world it would be Oreos everyday with a side of candy and cake..This boy has a sweet tooth like no other which in turns makes it even worse on his teeth. We limit the amount of sugary things he has. He isn't a fan of getting his teeth brushed, although its a heck of a lot better than it was a year ago. He has lots of sensory issues, mostly with his head area. Hates getting hair cuts, teeth brushed, ears cleaned, face wiped...

     So I can see why eating is an issue but if ya could just help mom and dad out here! Throw us a bone!!! Try something new..you used to love spaghetti..or ravioli, how about some mac n cheese?! I don't push too hard because its apparent right off the bat if he is willing to "think" about maybe trying something or if its an absolute no go. Most of the times its a no go. I am a mother, I will always worry if he is getting what he needs. The things he eats all have processed stuff and chemicals and god knows what else. I want him to be healthy.

     Here's a topic we don't like to get into too but its the reality of our life so here it goes. When he doesn't eat right he gets backed up. He has always had a problem with poop anyway and it seems like the past 2 weeks have been rough. Constipation is a bitch even for adults. Little man gets so backed up that we have to help him with Vaseline and qtips to get it out, while he sits there and screams. We have started giving him probiotics this week. They seem to help some. I just wish he would eat something cool..like maybe something I make for dinner. What do ya say Luke..get on board with mom, once? =) Not going to happen but there is always hope! Ahh the joys of Autism