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Sunday, September 30, 2012

Misunderstood and not even trying

It's not that I don't like my in laws, I know they mean well but they just don't understand. Lets go way back and give you a history...When Luke was about 9-12 months old his feet stuck outward a lot and he kind of walked funny. I took him to a specialist to see if it was something we really needed to worry about. The Doc said no thank goodness and for the most part they have fixed themselves. After that, the next time we visited I tell them this, their response was 'Ohh I just knew something was wrong with that baby. I just didn't want to say anything to you in case you didn't realize'. First off of course I noticed he is my child and my life, second there really isn't anything wrong with him or his feet soo, how could you just know? Aggravated but I get over it.

I have always been talked to one way when my husband is around and when he is not, that is something else entirely. I don't know how to take it, my husband says I am sure they didn't mean it like that..always. But after so many things its kind of hard not to take things one way or another. I have always felt that I don't live up to their standards, that maybe they think that I am too good for them or snooty to them. I am not. I am very down to earth but I don't like to be talked about by anyone and I will let you know this.

Two days before Luke had his WCC we had our formal wedding for the family (we had just done a Justice of the Peace in NC when we were first married). They came up for the wedding. As soon as my husband was out of the room...
'Whats wrong with that baby' Why isn't he talking Why isn't he playing Why is he screaming like that' etc etc His Grandma even started poking him with a wrapping paper roll over and over and he was screaming bloody murder. She wouldn't stop she just kept laughing saying it was so fun to aggravate him, that she does this with all the kids. Of course I told her to stop..with no avail.
At this point I had no clue what was going on with him. I knew something was wrong but I had no clue what would come 2 days later at his appointment and what that would start.

Of course I am going to defend him and say there is nothing wrong, he is jut fine. I cried and cried, I knew other people thought this of my sweet little man too. Now lets jump ahead a bit, he is now officially diagnosed..its Christmas time 2011. We tell them what is going on with Luke. We try to explain what it is. Now remember the reaction about his foot? Well this time we got 'There ain't nothing wrong with that baby' He ain't retarded Those doctors don't know shit'.
I explained to them that it doesn't mean he is 'retarded' or 'stupid' but nothing sunk in I guess. Now every time we see them its very much the same. They grab him and try to hug him and yell around him and he freaks out...every time.

So yesterday we meet up with my husbands family at his sister new house. They bombard the kids, are very loud and Luke freaks out. I tell them its a new place, he isn't used to seeing them so he just needs to get adjusted. They do back off and for that I am grateful. He finally starts to come around and wants to wonder off in the yard. What does he find, water! The kid loves water but this was a nasty run off ditch and they had no water at the house to wash him so of course I tried to keep him out of mud and nasty things.

My husbands mother takes the other kids into the woods just a bit and Luke wants to follow, he sees a creek now. They are turning back now and of course Luke wants to get to the water, its his obsession. My mother in law, tells him no and tried to pick him up. Naturally he doesn't want her touching him and he does want the water. He started to scream. All the while I am standing watching by my husbands Grandma when she says. Look at that fit, ya know why he does that..because he is never told no. My mouth drops. My son is told no constantly. He is not spoiled, he does not ever get his way because usually the things he wants are dangerous or extremely messy. Then I get 'You need to make that boy mind'.         Sure you tell him that will you?....

Skip ahead a little while I am sitting there while he runs up and down the yard over and over again, when G Grandma says to my mother in law..What do you think? My mother in law say ya know I don't really know and G Grandma says yea me either. 'Phyiscally he is fine, look at that boy run'.
I say of course he can run, he is not physically disabled. Then I try to explain yet again what Autism really is. I get 'well he aint stupid I don't see the problem'. Really???? Could you try to get it? Then she dives into a story about her other great grandchild who is only 1 and is talking and feeding himself and he minds his manners......blah blah blah. Great I would love for Luke to be like that but he isn't!!!!!

Then she grabs Luke and says, give me that book. He ignores her and keeps wanting to go on with his business. She tells him, Lukey give grandma that book right there, give it to me now. Again he doesn't respond at all and starts to get mad because she is trying to force him to look at the book on the ground and grabbing his arm. I tell her he can't, he has very delayed communication skills. Do they get it, no.

I don't think there is any more I can do. The things they say to me make it seem like they think I am doing a bad job at parenting him. Even though my daughter is NT and extremely bright. I have tried to explain over and over, it just goes in one ear and out the other. I get so stressed out every time its time to see them I go into rage bitch mode. I try not to even talk because I just get so upset. I know they love the kids but its so hard to deal with that negativity. I can't talk to my husband about it because he says I am sure its not like that, or something as such. He never sticks up for us because he doesn't want to accept it or cause a fight.

Thankfully we got to go home and relax. The drive home was very peaceful and Luke was back to his normal self once we were home. I just wish they would TRY. JUST TRY, or act like you care. He isn't some spoiled little brat and I am not a bad mom. Maybe one day things will get better. I know we need them in our lives, acceptance and education would be amazing. That's all I ask and to not judge what you don't understand....

Monday, September 24, 2012

PTSD and Autism

Let me please start off by saying that this is by no means a jab at my husband. I love my husband, he is wonderful to us and has never hurt my kids. This is just another reality of our situation that I am going to open up about and share.

My husband was in the Army for 9 years. He did one peace keeping tour and then two combat tours in Iraq. He was infantry, he seen a lot of bad things and I am sure had to do things most people cant imagine. I do not ask him about what he went through, he has a hard enough time dealing with it. His PTSD wasn't as bad as it is now until he got out of the Army. He has nightmares every night, shakes the bed from his trembling and you can't touch him to wake him. There have been two nights where my shifting in bed woke him up and he came at me. He did not hurt me but he was in my face and close. He, after a few seconds realizes who I am and relaxes and passes right back out. I in turn cry and so sleep on the couch. Lets get to family life with the kids.

I am the sole person caring for my kids. I am a stay at home mom, so I don't mind keeping things tidy. He doesn't expect this from me, its just the way I am. I do the cooking, cleaning, washing, feeding, bathing, shopping..etc. Throw PTSD and Autism on top of that and I am one tired Momma..always. My husbands temper is very short. Things that would set me off don't bother him at all. Thing that don't bother me set him off in a big way. There is lots of yelling and cussing (I like to think of them as sentence enhancers). This does get to be a problem with our son and some of his behaviors. We can tell Luke no multiple times for doing the same thing, or stop him from doing something and Luke keeps doing it anyway. Of course this is frustrating to anyone but to the hubbs it gets under his skin very quickly. I understand Lukes communication skills are almost 2 years behind so I have patience..PTSD has no patience.

I am always a little scared to leave my kids, not because he will hurt them..he NEVER has but because he is wrapped inside his own mind like Luke. He gets tunnel vision and has a hard time coming out in to our world. He plays a video game on the computer that he can sit at for hours and forget everything else going on. If you bother him while doing something he tends to get pissy sometimes. As you all know our little ASD kiddos can get into trouble in .5 seconds. So I often have bad anxiety when away. I never know if the kids will be getting checked on and watched. I don't watch my kids like a hawk but I always know what they are up to. This has gotten better lately - whether its the meds I am now taking for anxiety/depression or the hubs is getting better at watching, I don't know.

He has a hard time just spending time with the family at home. When we go out and do things he is fine and talks to everyone and interacts. I have to ask him to please play with the kids. Sometimes it lasts for 10-15 minutes and he is done saying that's enough so he can continue on his way - its never long enough for the kids. This momma gets tired and needs a break. I need Dadda to step it up. Emma is a daddies girl and starves for his attention when he is home. All adults need time away or to have 'me' time but the hubs comes home everyday, sleeps for 2-3 hours, wakes up and gets on the computer and can sit there until bed time. The game is his escape from reality, from his own mind. If he concentrates enough on the game then all the bad thoughts and memories in his head disappear for awhile. I just wish he could channel some of that attention into his kids. He has tried meds, he has a reason for not liking any of them. He does do counseling, this seems to be helping but as anything else, it always get worse before it gets better. He is attempting though and that's what matters.

There are some things Luke and his daddy have in common though. They both cant do parades, large crowds and definitely not fireworks.The 4th of July is the bane of our existence in this house. I LOVE the 4th but its a sacrifice I make so that I can keep my house functioning. They get lost into their own minds. Obsess over things.

I keep my house together as best I can. The hubbs really loves his kids but he has his own demons to over come. He would do anything for them but what I think they need the most is play time. We are having conversations about this. One last night on the way home, he says he is going to start helping me more. He is reading Emma bedtime stories every night now. He helped me with Luke on Saturday.

This all sounded a lot more put together in my head. I have been debating on writing it for days now but somehow after rereading it over and over I think I am missing things. Maybe I will add to it later. For now this is just my reality. PTSD husband, ASD 3 year old, 4 1/2 year old jabber jaw daughter and a crazy mom because of previously listen items. Ohhhh yea and a crazy dog! I guess that's why they invented meds!

Sunday, September 23, 2012

Christmas/Birthday/Gifts

     It's coming upon that season again. Ever since I went to walmart to pick up a few odds and ends and seen they had their Layaway open already I have been thinking about gift ideas. For Miss Emma, she is extremely easy. I could go shopping and in 30 minutes be done with all of her things. She is very much a girly girl and likes to play with Barbies and ponies and dolls. Lukas on the other hand..that's a horse of a different color....

On Friday night while driving home my husband asks (I knew this was coming sometimes soon but AHH) 'What are we going to get Lukas for Christmas'? (Internal ahhh shit moment) I tell him I honestly don't know, that I have been thinking about it but I cant seem to think of anything. I tell him I don't want to go overboard like I did the past few years because it is just waisted money sitting in a room, untouched.

He suggested that we just get him gift cards for his iPad and ask the family for some small infant toys. This would work but (I am probably just being selfish here) I don't want him to not have anything to open for Christmas. What about pictures of Christmas morning? He wont have anything? That's not fair. But reality is it's just another day to him. He has no clue about holidays and birthdays. The only thing he knows is that he can get some cake on birthdays, yippppieee. His third birthday was just a month ago and we went with some sensory toys. He was completely unaware it was his birthday. He refused to open gifts and look at them after I opened them (but hey he got some cake and that's all that matter to Luke). Last year for Christmas I would hurry and tear a piece of wrapping paper, put his arm on it and snap a quick picture lol.

So now I have a few months before I really need to crack down hard on my decision but it passes through my mind often. I hurt a little for him because Christmas and birthdays were the best part of growing up. Now having children, I look forward to it all over again to see their faces light up over gifts.  It's just another reminder of how different our life can be from others. (Not in a bad way, I love him but it's different) I just wish for him to be able to enjoy the Holidays like the rest of us. So much sensory overload goes with holidays. Its a learning process.

I have gotten many suggestions about what to do, for that I am thankful. Best way is to get advice from people more experienced in this. So here is the game plan for now. I will put on his compression shirt and we will visit some stores together during the week when they are not as busy. Go slowly down the rows of toys to see if anything pops out at him. If that does not work, I will wait for fliers to see if he will look at them. If that doesn't work then gift cards and dinos it is. Since he is hanging on to one toy, a big Trex..lets get some more big dinos. He doesn't play with the small ones. Every year we will get better at it. I will push him slightly every year to try to open things but keep them at his pace. After all these are the adventures of being in Lukes world, I am along for the ride - always.

Saturday, September 22, 2012

Obsessed

     I have been posting about Little Man always getting into his fish tank. It has now become his obsession. He wants to be in his room all day long staring at his fish and putting things in there. He isn't really hurting anything by being in the fish tank but it makes a hell of a mess!

Can't we be obsessed with something less messy Little Man? Maybe trains, or cars, books, anything other than stuff that can make everything wet and smell like fish water? As I lay there on his bedroom floor behind him I am silently laughing to myself, here is why..

He is at war with himself. He has done extra good today not putting tons of crap in the fish tank but that's probably because Mom and Dad took shifts on him in his room today(by shifts I mean mostly me). But as I sit there I see him with a plastic play screw driver and he keeps wanting to put it in the water so badly. I mean you can feel how bad he wants to just put it in there...just a little bit..maybe just the tip! And bam he pulls it right back out before it touches the water because he knows I am right there watching him.


Every once in awhile he will turn his head slightly to see if I am still paying attention and I just give him the biggest smile. His face turns to shit..I thought she would lose interest by now. So then comes the pattern again of putting the screw driver close and pulling it back. This is follow by him shaking his head back and forth - I assume talking himself out of it. He doesn't get frustrated at all, not even a tiny bit. I thought he would give up or just say 'screw mom I am doing it anyway'. But he doesn't, he doesn't get mad. We sit there for a long time, I start to get sleepy just listening to the bubbles and water.

Finally after all day of being at war with himself he gives in to the evil side - I like to think of it as being Stewie from Family Guy - he throws it in the water.

 After that he just stares at it. I tell him what did you do..this is followed by "bah bah bah" (bad bad bad?) and I cant help but not give a shit anymore. I wasn't mad to begin with because he is starting to show self control which is pretty damn amazing since my self control could use work sometimes when it comes to certain people. And usually after throwing something he will have to put his hand in there..then arm and more toys.. But he didn't this time. He just stood there on the stool to watch it float.

Ya cant pick what your kids will like/love/be obsessed with. I just wish it wasn't something that could get him wet, the carpet yet, toys wet...and smell like fish shit.

Thursday, September 20, 2012

Suprise Mom!

     Autism is not a dull life style in the least. It is full of ohh shits!, noooooooo!!!, awe man really? and many many more. There is never a dull day in my house. Something always happens that I just sit there dumb founded or instantly pissed or my stomach is in stitches from laughing so hard. Today it is laughing so hard kinda day. Something I probably shouldn't laugh about but sometimes if you don't laugh..you might hurt someone.

     I have to give my son major props for his efforts lately. When that boy is determined, he truly is. Right now his fixation is getting as many things into the fish tank as possible! I had to remove a table from his room because he was problem solving so well he was using it to get into the fish tank. Then after taking that away he used 3 other objects to get high enough. Well played sir...well played.


     I have had his room blocked off for a few days now with a baby gate. Today he gave me that sweet little face and was parked outside his room for most of the morning. Silly momma fell for his sweet little line of bull shit and took down the gate. I sat in his room with him so he knows..Momma bear is watching you. He was fine, didn't attempt one time just sat there looking all sweet like this...


     Ohhh but silly momma made a mistake. Big sissy needed some breakfast. Mom thinks Lukas is going to behave himself! HA!!!! (Lord I am such an idiot) I was gone long enough to ask her what she wanted, get her a package of string cheese from the fridge, open it and hand it to her. I return to this...(He went and grabbed a stool form the other room put it on the other side he was sitting on and got into his fish tank within approx 1.5 minutes)

Again...well played sir, well played! As soon as he sees me get gets down, sits on the stool and puts that 'You cant be mad at me smile on his face'....you guys know the one! So of course I hide it from him and I cant help but smile because he is so very persistent and he just cracks me up. But after he continues to get into it, or maybe I should say attempts to get into it I shoo him out of his room and put the baby gate back up. Of course he is all kinds of pissed at me right now, throwing an ungodly fit. So I walk away and don't acknowledge the fit (this works for us sometimes when he is mad about something/not getting his way). Silly me I walk away while Lukas is plotting his revenge, ohh yes this little boy gets even. Now here comes the surprise we've all been waiting for.

     I can just hear inside his head, oh yea..take away my fish tank and you'll pay. There are a few things that happen to tip me off but sadly its already to late. Bathroom door slams, my head jerks up and I start walking. Guess whats in the bathroom (besides my son)! All of Lukes toys that he has been throwing into the fish tank. A whole bucket full to be exact. You probably knows whats coming next by now. A whole toilet full of toys!!!! Ohhh yes! Surprise Momma!!!!!!! You are a rotten little wench and wouldn't let me play in the fish tank so now you get to bleach toys from the toilet, have a nice day! I should have probably been mad, but little man is friggin clever! I just start laughing, at that point shit is in the toilet (no pun intended), damage is done and he walks out happy and doesn't even attempt to go back towards his bedroom or bathroom again. I love you little man but today you reminded me of Stewie from Family Guy...you evil genius you! And it scares me...

Wednesday, September 19, 2012

Twilight Zone

     I feel like I have been in the Twilight Zone lately because things have been going so good. Don't get me wrong I am no where close to complaining, its just odd for so many good days in a row. Lets start with school

Luke hasn't had one meltdown yet at school. The only time he came close to one was during group singing time and the ST took him out of the room for a walk to avoid it. He is doing his tasks and routines like a friggin champ and his therapies are going awesome. He is signing 'more' without prompts now for tons of stuff, at school and home. Go little man!

     Lets move on to this weekend. I have posted before about Luke starting to stack things on the TV, he is also doing it on a table now. Do I mind? No not at all. The way he looks at it, its like an art piece he is trying to perfect. He loves doing it, its becoming more and more common now. The one thing I do not like about it is if I need something he puts up there...taking something is a big no no! You will invoke the wrath of bad ass monster Luke. So we have to be careful about what we take and only take when need it.

Also this weekend he engaged in real play for the first time since the changes happened. He was playing with his sister and the neighbor boy Tommy. He wanted to run with them and play in the play house with them. I cant even put into words how I felt...it was amazing! He kept looking for them and waiting for them to follow him. As soon as they would run he would take off too. I was in bliss.

Then we went to a Hot Air Balloon Festival in the next town over. He had an amazing time riding the rides with his big sister. I am sure she has to love it to. She does not understand what has happened to her relationship with her brother but I know she loves spending time like this with him again. They used to be best buds and I am sure one day they can get back to it. He had a rough time letting go of his dinosaur toy he took with him when he had to get on the rides but then he would smile so big. It was nice to do that as a family. I never know if he will be over stimulated or not but he handled it like a bad ass.

Things have been going smoothly at home too. He is going and sitting on the potty to pee (not consistently but I'll take it), he isn't backed up in the bowels department anymore, thank God and he has been over all very happy. He is letting me work with him on the iPad. Not as long as I would like but he is showing me things everyday that I didn't know he could do. Again THANKS POPPA JEFF for the iPad. Without it, I wouldn't know all the things he could do, trapped inside that little mind of his.

     I must be in the Twilight Zone! Things have been wonderful without any bad days. Usually when Luke has a good day its followed by a bad one or two...ALWAYS. Like I said I would be insane if I was complaining but maybe I am just waiting for the pin to drop lol! Is that normal? Am I alone in this thought? Ok, good maybe I am not insane after all. I am loving this phase and I am hoping it's not just a phase...that we keep moving forward and have tons and tons of awesome days.

 

Monday, September 17, 2012

Mornings...Overrated

     Every morning is just about the same at our house. Luke gives me a wake up call anywhere from 3-5a.m most days. I change his diaper, get him something to drink and turn on a movie of his choice. Most days, I wont lie I get to go back to sleep after awhile. Then when we all wake up again so begins our 'other' morning routine.

     I get woken up by one of the kids, lets say its Emma - I take her potty, get her something to drink and put on some cartoons. I go into the kitchen and reheat the coffee that was started at 4 that morning.

     Lets say its Luke who gets to me first - I get out of bed, change his diaper, get him something to drink, he picks out a movie..I turn that on and hit the ON button on the coffee pot. Then I actually go to the bathroom myself, brush teeth..look in the mirror and cringe and go repeat with Emma. Then the dog has to go out..so I take the dog out and watch him just sniff for 10 minutes while I get pissy because I haven't had my damn coffee yet to wake me back up!!! Get the dog back in the house, get him food and water and now its time to see if the coffee is warm enough for me to get a taste - by now I am desperate for my morning crack that I call coffee.

     Everyone relaxes for a bit while they drink their drink of choice. For Emma it has to be 'special' strawberry milk. Special as in its a Pediasure Sidekick because she doesn't eat right but she loves them soo mehhh whatever you say princess (if she only knew it was good for her..silent snickers). Lukes drink of choice is always a sip cup full to the brim of chocolate milk.

     Then after everyone is done..I hear the tell tale sign..Lukes sip cup goes flying across the room, Emma is mad at him trying to take an ipad away or something of the sort and my chaos for the day start.

     Ahhhh mornings, aren't they soo special! All the while I am saying inside my head, I need another cup of coffee before this shit starts today =)

Thursday, September 13, 2012

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.

Monday, September 10, 2012

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 =)
video

Thursday, September 6, 2012

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.

Tuesday, September 4, 2012

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...

Sunday, September 2, 2012

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.

Saturday, September 1, 2012

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