Saturday, August 22, 2009
Today my angel boy turns five! FIVE!
when the heck did that happen? He had an amazing day today. He came out with me to a party, played all day with the girls and had an amazing time. he behaved so well I could hardly believe it. then he looked at me with his sad face and asked where his cake was.
We had a cake for him and party on the 9th of the month since his memere was here. he was sad he wanted cake and presents today too. so we did. I was so happy he was aware and asked. he was so happy. God I love my children, my family, and I feel so blessed
Monday, August 10, 2009
strawberry ice cream, vanilla ice cream and sliced strawberry center. I coated it in whipped cream and froze it in stages. The next hurdle being how to decorate it
he wanted star wars... OK easy enough without coloring right... ummm
i found some action figures and made a fight scene he loved it
here's the cake
Sunday, July 12, 2009
So hubby is working mandatory overtime and I have a class tonight for my job. OK no biggie. except starting this morning Sammy has been a spazz! He put on his spider man costume and began screaming. Those of you that have an autistic kid understand that guttural scream i am talking about. the one that sounds like train brakes and chocolate pie being lit on fire while a moose dances the tango during mating season. Yeah pleasant really. It is one of those sounds that only a mother could love, and even then not so much! 12 minutes, enough to make me want to run away. Mind you I had just worked a 9:30-6 am shift came home and was trying to get ready for church. I knew it could get ugly.
he was OK at church only tried to run out once causing me to barrel after him down the side pew and almost smash into the usher. he also collected all the books in the first 3 isles and made some lines with them. He then placed his head on the pew fabric and ran on his hands and knees from one side of the pew to the other, the whole time static boy kept his head in contact with the velvety fabric.
We managed to leave church with mnor incidents and nothing more than a shoeless boy with static head
Wednesday, July 8, 2009
Or in this case a dark and stormy morning.*enter dreamy sound with slow fade into a flashback*
So it all began yesterday at summer program, Sammy ate play-dough. For those of you reading this ( an I assume people are) play-dough has gluten in it. Giving Sammy gluten is like setting off a time bomb inside of him. He does not have celiacs, however, a lot of kids on the spectrum react badly to gluten and even casein. Sammy seems fine with limited dairy but gluten is an all out NO!
It happened though even though they were really trying to make sure it didn't happen. So today you could see in his eyes that it was going to be bad. I let him wear jammies to school but managed to talk him out of snow boots. He did however wear his pirate wellies. Good compromise! He wasn't thrilled about going to school but managed to get in the van without major melt down. A few short screams that his pants made him crazy and a minor flap session over his pants leg that came out of his boot.
We get to school a few minutes too early so we wait in the car.Immediately he starts bouncing around the car and wanting to get out. It's raining here today and I really didn't want to stand in the rain. I kept him distracted as best i could but then another child was in view so out of the car we went.
Everything seemed fine until the teachers came out and I saw he had his brothers harry potter wand (also known as a weapon in Sammy's world) So i had to remove it from him. Yup that did it. Put him right over the edge. Sam hid under my shirt and as I handed him over to the teacher he started punching and kicking. I walked away because I know I only make things worse on days like today. I sat in my car and watched the poor teacher struggle to get him in the door, but he went.
I hope he has a better day then he did morning.
Friday, July 3, 2009
today he caught me. he was watching the fan go around and around. He has loved fans for as long as i can remember. In fact it was his first sign. He would sit on the floor and wave his hand in the air in a circle. it took me a week of much frustration to figure out what he was doing. Of course this was back before we lost him. Before autism became attached to Sammy like a large birthmark. we have learned to accept Sammy in his entirety and have been able to adapt to the boy he is. We grieved the boy we thought we had and have learned to accept the one we got. every step of the way only loving him more and more each day. we are truly blessed to have him. I like him just the way he is
In this video, my husband was in his world checking out the fan too.
that's my story...the end
Thursday, July 2, 2009
BEFORE JUICE BOX
AFTER JUICE BOX
He slept in his tent yesterday in my living room. He even told me "mom, you snuggle me!" so I did. he gave me a pillow and put his head on my chest.kissed my neck and told me " your smell pretty mommy, My just love you" totally mae my entire day!
Wednesday, July 1, 2009
- his people have eyes now when he draws them.
- he has learned to build castles with blocks
- he has learned to say I love you
- he has learned to sleep in his bed
- he likes to color, he may not do it well but he does it
- he has learned to have authentic conversations
I am so proud of that young man. He has come further than I could have ever imagined. He was sitting at the window counting raindrops each one after ten being 65. 28 minutes of sitting there in the window counting rain drops. Now he is laying on the floor rolling back and forth. I don't fight it the way I use to, I don't grieve the way I use to, I don't feel the way I use to...
because of him
how can you not love this kid
I felt hopeless when we found out. I feared the future and the past, I had horrid guilt, and cried all the time. I freaked out inside every time he stimmed that i would never get through to him. I cried when he ran circles in the house and couldn't sit still for a second. But those things that made me sad have become my joy. Sammy is just Sammy who happens to have autism. He just happens to think in ways that may not make sense to other people. That is OK.
he is who he needs to be and to try to "cure" him and rip the autism from him seems so unfair. It is woven into our lives. Don't get me wrong I want him to be able to live without insane frustration, I want him to live and succeed. But I don't want him to change. I like him the way he is, I love him for his weirdness, and I LOVE seeing into his world when he lets me.
Friday, June 12, 2009
Sunday, May 17, 2009
There were first communions at church today. Fine. I wish I had payed enough attention to know that so I could have gone to a different church. Sammy doesn't like people he doesn't know in the crying room. It freaks him out. So needless to say he was very off. He kept freaking out and punching and kicking. Not anything out of the ordinary really.
At one point Dan went down to get tissues and Sam went with him. Dan came back into the crying room to tell me " Sammy is gone" I thought he was kidding. nope! He lost Sam
I tried the parking lot first and then the downstairs, the closets and the bathrooms. They announces his name in the church. No Sammy. I started panicking as we hit the 10 minute mark. there were so many people there who don't normally go to church. People who were only there for the first communions. I kept looking, and directing everyone so they were just running no where. 15 minutes from the time he was gone Dan found him. He had locked himself in one of the classrooms and was hiding silent in the corner.
I believe I aged 20 years today. I want to cry right now and throw up.
Monday, May 4, 2009
Mommy, I love you and i snuggle you and I like you, and I want a sword an a shield and the thing that goes over you a breastplate and a shield helmet and some one take my blood out I drink my blood. I want a new house and a new movie and a good movie and there is no killing in it it is called and I want a new movie and it is going to be Tinkerbell I want Tinkerbell Dad and i want a girlfriend and a new black controller and my shield when it rips I need to get my Darth Vader mask and my Darth Vader everything. and I need a new sink where peanuts go in and i need another lamp and another spoon and a shirt for Daddy and A shirt for me and a shirt for me too, A big computer and a new truck and a base ball and i want to go to baseball and a hamburger and not my allergy backpack and that's all I have to say.
Thursday, April 16, 2009
One would think that if a child has the word ALLERGY listed beside his name, a back pack listing his allergies, a ton of food from home, and a bright red backpack saying ALERGIK-ID you would not feed him without being ABSOLUTLY sure of his allergies …right? How can I make it any clearer???
NOPEnot last week. Apparently since Sammy said he can have hot dogs the teacher believed him. He got the school lunch, no money no free lunch…NOTHING. She gave it to him anyway. Granted his regular teacher is really good about making sure he eats safe and watches him around the things he cannot have. This however was a substitute. WTF?
Samuel cannot have gluten, artificial colors, flavors or preservatives. They make him crazy. He also cannot have tree nuts since they make him die.
So what did he eat?
A hot dog with a bun, a red jello and a coffee milk.
I lost it. I have to live with him and although he is amazing at school he is a terror at home. My friend Shannon had the joy of seeing him in a good but busy mood and that isn’t even half of what he does when he gets gluten and artificials.
It can get a little overwhelming here.
So needless to say I wasn’t very nice to sub. I may have even made her cry. She kept telling me it was only a few bites, he tricked her, he manipulated her… blah blah blah. OK let me set this strait. He is a 4.5 year old with AUTISM. He gets in line everyday and asks for the school lunch. He even tried to buy lunch one day with money from a monopoly game and a few pennies. Every single day he does this. It’s a compulsive routine.
Things are now in place so it will NEVER happen again
Tuesday, March 31, 2009
yes someone dared say that to me. I was insulted on so very many levels. yes I still have my child with me and I can hold him and kiss him and love him. he is alive and I am grateful. this thief, this wolf in sheep's clothing, this autism, will not physically take him away from me. he is right here in body.I can hug and kiss him. I am grateful. he has come a long way and I .AM. GRATEFUL
it takes away so much from him.it hurts me to watch him struggle.
to miss things that other kids love because it's too loud or too busy or too anything. add to that he is high functioning so he understand that he is missing something.
taking away his favorite foods and replacing them with barely passable substitutes so that he can function. it works but it is another sacrifice. another concession I wish i didn't have to make.
watching him slip away into his world when he does eat something he shouldn't. watching him cry for no discernible reason. scratch at his socks and pants because they hurt him just by being on his body. knowing he struggles through holding himself together at school only to fall apart completely when he gets home and didn't get the snack he thought he should.
please dont ever say its only autism. that hurts me. it's not ONLY autism. while it wont take him away physically I have no idea what the future holds for Sammy. Unless you live it you can't possibly understand the struggles he faces. the struggles I face as a mother, to see him as a child with a disability and not just a child who misbehaves.
please don't suggest to me that I need to discipline him more. don't think for a second I haven't tried it. I have it doesn't work. he doesn't care.
please don't tell me he needs a good beating. there is enough hitting in this house without me hitting him
please don't tell me I am too easy on him, hard on him, too strict or too soft. unless you live this life you can't possibly understand. if he melts down in public. don't stare at him. your dirty looks are not helpful. he may have autism but he also has feelings. I understand it may be quite a sight to see him screaming like the devil, but your advice isn't helping get me calm enough to deal with it. in fact I may just consider hitting you. please when he is throwing a fit don't tell him you will take him home, talk to him about Santa or the Easter bunny, or tell him the police will come. he doesn't care or understand that concept yet. he may look normal, but every minute of everyday demands are placed on him that he cant understand or handle. just because he looks normal doesn't mean he is.
please understand when you say those things, it hurts me.
it ISN'T only autism.
Monday, March 23, 2009
Tuesday, March 17, 2009
Sunday, March 15, 2009
then Sammy popped one. and looked stunned. I asked him if he was OK and he said . "yes,That scared me ha ha !" which I have now learned is a learned skill (thanks Shannon) he can generalize the phrases we have taught him and is able to use them properly
Friday, March 13, 2009
Day two- rough trip really. We left later than I had wanted to and as a result Sam and Nate were not happy. Though I have to say Sammy did far better than I could have imagined.
We got to memere’s about 7:30. The last 30 minutes of the trip consisted of screaming from nate, at which Samuel would scream for him to stop screaming. Fun fun fun
Day Three- sam, louise and I went to the farmer’s market. Sammy had a loquat and LOVED it. He keeps talking about the circle fruit. We bought him a pint of strawberries and he ate them all as we walked through whole foods after.
Thankfully his barrack Obama/black man obsession seems to have faded. He hasn’t mentioned it once since we have been here.
Daniel and I went out with Michelle and Jay (who also have a child with autism) for valentine’s day. We went to raglan road. The food was amazing. I will post about that on the food site later though. All in all a great start to our vacation.
Day four- Church today. Sammy went off with Kayla to the child ministry program. He did very well and even tried to participate. I can’t even explain the way I feel to see him acting like the other children. To watch him focus and smile and play along side other kids in a way that seems so “normal” I can always see the things that make him different but hey they are there and that’s all there is too it.
We brought everyone to CiCi’s pizza. I made Sammy a GF pizza on a bagel and brought it with us. Packed some treats and sweets for him and he was really quite happy. He was so good the entire time we were there. I wonder if just the change of pace had made him so much easier. Then again the other shoe just may drop and kill us all. If it hit’s the fan, it will hit.the.fan. And then we are all screwed.
Thursday, February 19, 2009
We have been trying to teach Sammy knock knock jokes. I think these are probably the easiest to understand. So I start with this Monday of last week, We still have not met with true success.
It goes like this.
Sam-- AHHHH *running away*
Once in a while he has said “Boo Who?” but when I ask him why he is crying he always tells me he isn’t sad. No matter how many times I tell him that it’s the funny part and explain it.
We went through the tunnel/bridge and Sammy was impressed though at first he said he didn’t want to be underwater. He didn’t want to get wet.
We get to the hotel and Sammy asks me who the bathroom belongs too. I tell him we sleep here tonight it’s our hotel room. He looks at me and asks “in the bathroom?” Hey he makes me laugh daily!
Saturday, January 24, 2009
Sammy enjoying his brownie so much he fell asleep while eating his good day treat. melatonin is the best thing ever.
Tuesday, January 13, 2009
Monday, January 12, 2009
Tuesday, January 6, 2009
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Monday, January 5, 2009
Friday, January 2, 2009
Interestingly enough when he runs a fever he seems normal. I should have known something was amiss when he explained to me that his head was a melon and if I ate it he would go to heaven. He really isn't feeling much better yet, but he feels well enough that his sensory issues are over the top. his blood sugar is a mess and he is off diet from the Tylenol for the fever. necessary evils yes but the fall out sucks. he screams and cries. he hits AJ whenever he gets in striking distance. he is stealing food and tonight he woke from his nap freaking out. screaming about the light and the noise and everything else. I am exhausted. poor baby cant help it. he is stimming on everything. he keeps singing songs over and over and over, playing with the door chain like a cat with string. counting to ten over and over. kicking screaming and just being an autistic 4 year old.