The wonders of a cardboard box

You have heard me say before that Lukas doesn't play, at all. I have tried all kinds of different toys, the boy just isn't into it. Yesterday I went and purchased everything in layaway and brought it home while the kids were at school. It came in a pretty big box. After emptying said box and putting all the toys in hiding, I left the box to sit in the living room because I had to hurry back and pick up the kiddos from school.

Little man passed out after 5 minutes being home, slept for about 3 hours!!!! (WOWZA)
Once he woke up something awesome happened...He noticed a big cardboard box. Who would have thought a cardboard box is all we needed. He has been playing in it since 6pm last night. He loves it. He puts his dinos in there and crawls in there. He is closing the flapps on it and popping out! Holy shit!!!! He will turn it on its side, make a fort out of it. I cannot be happier right now. This is huge for him.

Now too bad for the cardboard box, Luke is just a little rough and he is doing an awesome job tearing it up! He is definatley making that box his b*tch! It wont last long but maybe I can find another. Anything to get him to play.

It is amazing to see the sparkle in your kiddos eye. He is super happy right now and that is all that matters. It's not the traditional type of play...I like to think it's OLD SCHOOL play. I did this as a kid before all these fancy toys came out. I am sure most of you have done the same. He is very simplistic, he loves very simple things, means he is using his imagination to play =) Go get the box mean boy!! Show it who's boss!

Thanksgiving - What I am thankful for...

It's now November, time for Thanksgiving. There are tons of things I am thankful for but I will only post the most recent and near and dear to my heart for now.

My Team! I have an amazing team for Luke. From Doctors, Dentist, School Staff and Therapist. I am truly blessed. I couldn't ask for a better team.

Lets share a little about Doc. I know you read my blogs so I hope you enjoy, I absolutely love you and how you are with Luke. I couldn't ask for a better more caring Doc ever. Doc has had Luke since about 9 months I would say. She has seen him grow. She knows him pretty well and knows when he is having a rough go of it. She was the first to see the signs of Autism in my little guy. She sat with me for about 45 minutes while I cried and cried. She gave me all the connections I needed to get started. She truly listens to me and doesn't dismiss anything I say about what's happening with Luke. She has fought the insurance board for us, to get little man what he needs. She has seen us on a moments notice, several times. She is an amazing woman. I think even if I moved away, I would drive a hour to have him seen by her. You are truly appreciated. Thank you for being you!

 

Next thing I am thankful for is my school Team. They sit down with me, go over game plans, new ideas, ask me for my advice and what works best for him. I was so worried about the transition to the new school. I am soo glad that worry was for nothing. Miss Shawnna is awesome. She talks to me everyday about what happened at school, which I love soooo much. She even called me this past weekend, she found most of the toys I wanted for Luke for Christmas, on sale. She offered to pick them up for me and exchange on Monday! How cool is she?! She was thinking of us and cared enough to pick it up for me!! Amazing!! His ST at the school is amazing too. She is doing wonders with him. Getting him to do more signs each week. His PT now has him jumping, truly jumping, both feet off the floor (which he loves!!! sensory input woohoo). He has made so many leaps and bounds while being with them. I am over joyed he gets to be with them for the next 3 years.

Lets now talk about his Speech Therapist outside of school. Miss Amy is her name. He took an instant liking to her. He holds her hand, she can touch him, he even smiles and laughs for her. I can tell she truly loves what she does. He gives her a hard time sometimes, bullheaded I like to think. He likes to test the waters and not show what he knows at first to see how far they will push. She just keeps on trucking. She is super sweet and gets him to do things I have never seen. So glad we found her.

What do they all have in common? I know they really care about my little man. Its amazing!! Thank you for being you. I am thankful to have you in our lives. You all become like a second family to us.

What is this clean you speak of?

What is this thing...'clean' you speak of? Is it a real thing? I am not sure I have ever seen it! Does it last at your house? Can you teach me this thing called 'clean'?

Let me tell you a little about cleaning and my house.....

Cleaning is something I do when kids aren't around. Because lets face it "Cleaning while kids are in the house is like brushing your teeth while eating Oreo's." Just doesn't work! But why clean everyday? I have a 4 1/2 year old NT daughter who is a ball of energy and a 3 year old son with Autism. The house might stay clean for a hour if I am extremely lucky. Now some kids on the spectrum love order, to line things up or stack. This is not the case with my Lukas. This kid loves to make messes out of anything he can get his hands on! He loves disorder!

Do I often feel bad when the neighbors come over and my house is a mess, or I have to spend hours cleaning for family to come over because it hasn't been done properly lately, ohhh hell yes! But what am I suppose to do? We aren't pigs, the house itself is clean to a degree. I scrub the floors, do laundry, clean the bathroom. But if you were to look inside my big bay window you would see total chaos!

I cannot find it within myself to clean and try to have a 'clean' house when I know it will be utterly undone within a hour. Who has energy to keep up with cleaning anyway when you have 2 kids? Especially my two..ohh boy they are something else =)

Kids will be kids, they are like mini tornadoes who sweep through quiet little areas of beauty and destroy everything is their wake! Kids should be able to have fun and have toys everywhere I say, partly because I don't want to pick up every 20 minutes and two they should be able to play with what they have. They are only kids once, so let them be kids.

So who else is with me?! Lets go on strike and relax when we have the chance! Life it too short to be cleaning all the time anyway. Lets party when our kids aren't around! =)

Nap Time...Where Are You?

Nap time seems to be coming to an end. Emma has been out of nap time for a while now but she can also entertain herself for the most part and is not terrorizing the house. She is my good little girl. What I am not used to is, Lukas not napping. The past few days naps have been nonexistent! WHY?!?!!?!? Literally how does this kid do it? No sleep ever?! I wish I could get some of that energy.

This kiddo can go on 2-4 hours of sleep all day, running around, going to school, dumping and throwing things all over the house. He is like a one man wrecking team! Ohh mom just cleaned up this..'snickers' lets throw this on the floor, or spill Emmy's cup of milk/koolaid/juice. Not even kidding after I got done cleaning one day, I walk into the kitchen after folding laundry in my room and he has taken everything out of my purse, out of my wallet and the stack of mail on the counter and thrown it all over. I couldn't even see my kitchen floor! How does this little shit not get tired of driving momma nuts!

Nap time is one of Mommies favorite times, how dare you be so rude and take something away I love so much! You didn't even ask my permission..this isn't fair. I call bullshit sir! I will have my revenge someday....I will!!

Now I beg of you on my hands and knees..bring back nap time! Even if its for just 30 minutes to a hour!

           Sincerely,
                 Momma

Being an NT Sibling

After getting a post on my facebook page from another mother who has a daughter the same age as mine, I decided to write this post. She asked for any books for the younger NT kiddos who have a sibling with Autism. It got me thinking of all the things Emma and I have discussed, how she doesn't fully understand and how it effects her.

Emma and Luke used to play very well together, they did lots of things together. He was always crawling around following her, such as little annoying brothers do lol. When the changes started to happen he didn't play anymore. He didn't play with her or want to be around her. He had to have his space. She of course does not understand all this. She just wants to run and play with her brother. I would say little brother and he is in the sense of age but he is just as big as her lol.

He started to become violent towards her. Always pulling her hair, started biting her, would slap her and kick. This happened anytime she came near him. There was no safe spot, she was not allowed near him. Emma is very outgoing and chatty..and loud. Of course to Luke who hates a lot of loud noises, this is no good and upsets him easily. I am sure for him, he was very frustrated that he couldn't just tell her to get the hell away and with all the changes going on it was very hard for all of us to cope let alone feel the things he felt.

Things have gotten easier now but we still have problems. He doesn't just hit here for being around him anymore, now he does still go after her if she pushes it but its usually very provoked. They can sit and watch the same thing on the iPad together without a meltdown or lay on the couch together - not touching- but sharing space.

He still doesn't play with her. She is always saying come on bubby lets run! Come on bubby chase me or go hide and I will find you. He does none of these things =(  When she goes for a play date or a solo night at Grammies, she says can my bubby come with me? I tell her no, explain that its her time away and to play and have all the attention on her. Her response - but I want him to come. I know she really does but even she needs a break from the Autism life style.

Sometimes, which is getting more frequent, she asks if I think Luke loves her. This breaks my heart. I tell her over and over yes of course he does, he just doesn't show it like mommy and daddy. I have to keep reassuring her. Even though he is younger she wants his approval on things, wants to include him and play. I explain that he is different and sometimes he needs his space. That loud things make him upset so we have to use our inside voice (which doesn't work by the way).

I am thankful for the progress we have made though. When we build a fort they can both enjoy it. He can sit in there and have a good time next to her, while he is enjoying his own thing. I very much hope one say she will understand and he can learn to play with her again. Its a learning process for both of them. She is now a peer student in his Integrated Preschool for other kids with needs. I like this because she is exposed to other kids like her brother and hopefully this will make her understand it better. For now I am a referee and I will keep on slowly trying.

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....

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!