Tuesday, December 16, 2014

The Nutcracker

I am sorry I haven't posted in over a month! I wanted to make sure I didn't jinx his first year with the Nutcracker at The Fort Wayne Ballet by even saying things were going good or by saying anything at all. I would say from the start I had my apprehensions as to how well the little guy would do.  It is weeks of practices and many late nights of rehearsal and then shows.  Ask any 6 year old to sit still and be good for two to three hours backstage is hard enough, but with someone like Jacob its twice as hard. I am going to start at the beginning.....

Even before this season I was thinking about this a year ahead, always have to think ahead...we took him to see his sister perform in the  2013 Nutcracker and he fell in love with Drosselmeyer and his magic.

 Next step...fast forward  May 2014 end of year showcase. All ballet classes perform on the stage for the family show. Will he love it? Yep, ate it up and asked to tryout for nutcracker in the fall.

Tryouts: I have been through this 4 years with Sophia so I knew the drill. Well they give the kids numbers to be pinned to their shirts and cart them off in groups. Of course there is the worry he would complain about not being #1 and the pins bothering him through the shirt but they didn't....thank goodness!  I thought it would be 30 minutes without seeing him, it ended up being over a hour. Without me there....I was freaking out and hoping there would be no huge meltdowns or issues. He came back smiling.

Cast lists: Worry set in, what if he didn't get a part? "Well he can't know what he's missing if he's never been in it" I was thinking. He got a part, it was a mouse, and it was exactly what he wanted!

Practice: I already talked with the teachers ahead of time about issues. They know he  might not do well sitting in the  classroom during the practices for over a hour with just waiting, so I kept him in the hall playing on his DS until his cast was needed.  During his time waiting his turn in the classroom practices he made goofy faces at himself in the mirror, played with the laces on his shoes, or sat there humming the music.  One time he did manage to get separated from the other boys and was playing with the equipment on the side of the room. I have to say overall he was great during practices and enjoyed doing his part.

Rehearsal nights: The longest nights. These were like a trial run really, and how would he handle wearing the makeup, the costume, the large stage, the lights and all the props? Well he did want to investigate props the first night, good get that out of the way. I know he was getting familiar with his surroundings and probably good so he can move on and next worry which was about the makeup the next night during dress rehearsal. Which of course  he protesting putting on. Then protested putting costume on. I just used some slight of hand momma bear sweet talk and boom he was in it! LOL He did great were the reports that came back.

Show time:  Jason and I had backstage passes just in case and throughout the whole thing we ended up using it three times. Honestly I was going to sit with him and be there the whole time. The more I thought about it I decided that would not be best. He needs to be independent and we were always downstairs if need be. I heard of issues in the dressing room, not from him but another child pestering him. I did have my little mother hen up there too, Sophia always looks out for him and it made my choice to stay downstairs even better. He was given some independence and he did ask for us and a break, I know it was to get away from the other child a few times and some were because the girls were so loud he couldn't read his Captain Underpants book. He complained of being hot in that costume and didn't like getting his makeup off either. He was even released early which helped with spending less time in the loud dressing room.  During one of the shows he made me crack up. There are security guards that check the kids in and Jacob told one of them he needed to go into the girls dressing room to check how the girls were doing.  The guards face was hilarious and I could tell he was trying to not laugh! He told him that he wasn't suppose to be in there, and of course Jacob protested. Jacob was supposed to be  with all the little girls thou, the guard probably thought he was suppose to be with the younger boys since hes so big, but they put the little guys with the little girls, since they all come dressed in there stuff anyways. LOL

Overall: I was told by a handful of parents they thought he was a sweet child and they enjoyed him being there. My heart ....so full after hearing that he made it through this and made some new friends.  I made sure to ask him while fresh in his head right as well left, what did you love about being in the nutcracker? I listed off all sorts of things like the stage, the music, costume and anything that popped into my head. His reply " Mommy I loved everything!" I then asked, What did you dislike about being in the Nutcracker? His reply " Nothing! I loved it all!" Then the big question, Do you want to do it next year? "YES!" was his reply. Well, we will see this next fall, we might be doing this all over again....

Tuesday, November 4, 2014

From Sophia

 
Hi!I am Jacobs big sister Sophia and I would like to talk about Jacob. My favorite thing about Jacob is that he is funny and has a very big imagination. One time he asked me to play Diversity. I asked him what that was and he said it was a Minecraft game, but he wanted to play it in real life. I thought that was very funny.
   Another thing I like about Jacob is that he knows stuff that we don't know.  Just the other day he was talking about atoms, protons, and antimatter. Then he said something about strange matter and we didn't think it was a real thing until we looked it up and the definition was the same thing Jacob had said to us.
  I love Jacob so much. I think that even though he has autism he is no different than any other kid.

Leaps and Bounds

We are moving in leaps and bounds! He definitely caught me off guard this week  with his educational plan. It
has me second guessing what material we should be working on. I am proud to say that I have moved him to second grade but in a more restrained manner. He is actually in 3 grade math and now fourth grade reading.  I am trying my best to get through skills that he hasn't done so he doesn't have too many splinter skills. His pace is months ahead of where I thought we should be and at this rate we will be in third grade by January for english skills. Just the other day I checked in his math program and the little stinker is moving up to fourth grade math! Sometimes I just have to take in the awes of Autism. These moments when I see the bright little man we have make up for all the days we struggle just to get our shoes on or even get that shower done in the morning!

Monday, October 13, 2014

The Cooper-Eager Observation

    We have stumbled upon the television series The Big Bang Theory. I have so much to say about Sheldon and now why I am now sucked into watching it.  I'm not one for watching shows that deal with what is going on with our family. I like the idea of escape and started to watch it this year just because I heard it was good. I had no idea I would get hooked on watching The Big Bang Theory and seeing so many similarities between Sheldon and Jacob. I know the writers say Sheldon doesn't have aspergers. I have read the articles and don't care if he is labeled that or not. What I do care about is how he is portrayed and how the other characters treat him. He doesn't need a label to see his struggles socially and what others find as his quirks are what I see as a combination of asperger like qualities. This page explains many and even talks about them in context of the show.(http://gypsumgirl.hubpages.com/hub/Sheldon-Cooper-PDs)
    What I love about the show is how even with all his personality quirks his friends try to understand him and in many ways try to help him with social issues he struggles with.  There are times where they are super frustrated in what he has said or done and try to explain to him what he has done is not acceptable behavior. It in a way gives me hope of people excepting Jacob and all his quirks. This week I have watched Jacobs manners around others and see that he struggles understanding them.  Also Jacob's way to start a conversion has changed from "excuse me" to "I want to say something".  He seems more patient in waiting to take turns and excepting no.
       He also went off telling me how much more brain power he had over mine. The little stinker knows he is smarter than others and sounded so like Sheldon in that moment I wanted to scream. I told him how rude that was to say that and that being smart also means knowing when not to say something that could hurt others feelings. I am so glad he is getting more ABA therapy this year and working on his behaviors instead of being at school full time. I have news in the school department but will write about that next post. His focus on his behaviors I think will be more beneficial in the long run.

Wednesday, September 24, 2014

Friends

   This is a subject that I have a hard time tackling with Jacob. He is so forgiving and doesn't understand when someone is being mean to him. I have caught him on so many occasions flat out ignoring what was said to him. I don't have the heart to tell him what the other child had said was mean and not sure how to have him confront such a child either. I almost like it that he ignores them so that he can move on. He doesn't seem to hold grudges against them either, because the next time he is with them he is happy to see them and calls them his friend.
   He does have some friends that are excepting of is social awkwardness. Most are adults. I feel tears well up just thinking about it. I just wish more parents would talk with their children about his disability and how to behave around him. One child told him he would be an embarrassment while preforming to his face. What is sad is I have told his parents of his disability and it leaves me speechless as to why he said mean things to him. I guess the parents never discussed this to their child, I don't feel it is my job to teach other peoples children what is appropriate to say to others. But what this child has said to Jacob on numerous occasions is inappropriate to say to anyone.
   I also have encountered the tattle tail children too. Making sure I know every wrong doing of Jacobs because again they think everything he is doing is somehow bad. When some of it is social miscommunication between their child and mine.  Again these children were never told of Jacob's disability and for some odd reason enjoy seeing him get in trouble for some reason or another. He continues to forgive these kids too because either he really wants friends or his heart is just to big for this world.....which I believe the later. He is so loving and to those who treat him with the most respect he gushes all over them!

Monday, September 8, 2014

Belly Giggles

I LOVE belly giggles! Something magically happens when my kids laugh. As if the worlds problems are on hold. I feel refueled when I hear them. They are what gets me through the tough times and makes the happy times over the top. I will admit I have been known to steal a few of these with tickles! I am a true believer that happiness is the best medicine. It doesn't cure everything, but it sure fills me up when I need it the most. Giggle on...

Tuesday, August 26, 2014

Change of Plans...What Plans?

As I sit here with my second cup of hot tea this morning I am weighted with more decisions that I have for Jacob. In a happy world I wouldn't have to plan ahead knowing that his ABA therapy will decrease in hours in the next few years because insurance will not cover him since he should be able to go to school right? I mean that is our goal anyway. To be able to get through the day and be "normal".  Well last year didn't work so now what? One thing I have learned through all this is that mistakes are bound to happen and one persons normal is not another ones normal. If I seem cryptic I don't mean to be. I want to give Jacob opportunities to work on behaviors and I thought I was doing a great job but just had a wake up call that I am really not. Plus we might be throwing away hours of therapy by attempting to plug in home school at home and doing social and speech therapy outside of ABA. We are losing hours that the insurance will not give us later. I feel like a juggling act gone bad. What should we do? I don't know, I thought that we were doing what was best for him, I know I'm being overly critical of myself. I have pushed with him on so many things and thought it was enough. I now need to step it up. This is more of those hard choices I was talking about before.
 

Thursday, August 21, 2014

Jelly on the Belly


Since he was 6 months old we have had to get Jacob regular ultrasounds on his kidneys due to a genetic condition both he and his sister have. It is called Beckwith Wiedemann Syndrome. Here is a link to explain: http://en.wikipedia.org/wiki/Beckwith-Wiedemann_syndrome. Basically an overgrowth syndrome and he had mild features at birth, but since his older sister had the kidney cancer associated with it we have him checked every three months. He will be getting these until 8 years old so we still have a year and half left. I try to make  it as fun as I can and distract him during it. At least it is painless unlike the blood tests they did until age 3. He loves calling it jelly on his belly and popping bubbles while we do the scans. Lately he is into watching his organs move while they do the scan. This week he managed to talk the technician into looking at his breakfast swimming in his belly and see his intestines and bladder. Only a matter of time before he asks to do it himself. Scans were clear, so I can now relax until November....

Wednesday, August 13, 2014

Figuring Out Jacob's Puzzle

The puzzle piece represents the Autism world with the idea that the causes of Autism are puzzling and the thought that any one with this condition does not fit in. I was thinking about a few things about the puzzle piece and how it relates to Jacob.  More of how I visually see his condition. I love puzzles and also have been really good at them since I was little. I do feel like everyday is a challenge and can see the the puzzle pieces. I feel like we get them together once and awhile but then one piece alters just as quickly as we get the pieces together. We haven't been afraid to stop trying to fit a piece that just wasn't working in Jacobs puzzle. We have switched therapy, preschool and now school to get him what services we think will be best for him. Autism is puzzling and I am reminded daily that I am going to be kept on my toes with him. Some times I torture myself with thoughts of how bad that event will be and it goes smoothly and others not expecting will be an issue and then they are. I honestly feel like it is a evolving puzzle one that changes as he grows. I love it that he challenges me, because with him I am a better person.

Starting Home School

  Home school came faster than I thought. I am so far three days in and have what I think is a great plan. Executing it will be another story. I have done enough thinking about what I am going to do to wear a person into frazzles. Now comes the fun part, teaching and spending time with Jacob. I have set aside two hours in the morning to work on home school. I also have him doing things at therapy the rest of the day to keep him on track for math and reading. The most challenging aspect of the whole thing has been figuring out where to start with him. Age wise, yes he is a first grader, but academically he is much higher. I am engaging him in science, writing and history this year as well as art. What is so great about this is he is going to have an individual educational plan that focusing on his weaknesses and we don't have to repeat or "review" what he already knows like it was in kindergarten for him.  If I ever hear "I'm bored" I would be surprised.  Him expressing this was a huge red flag before the anxiety attacks happened last fall at school. Having him tested last year was a great start to know where to begin with him. So I feel like we are prepared.
     I am honestly excited about being his teacher and wish I had done the same for Sophia. I know this is what he needs right now since he is such a different learner than what public school can accommodate for. I feel like he is going to have a great year and can't wait to see how much he grows.


Tuesday, July 15, 2014

Buying a Rocket Ship

Our space obsession has gotten serious now....So the other day Jacob was talking about the atmosphere and how many miles it takes to get out of the atmosphere and into space, which he says is around 60 miles. He then compared it to his dad's  running time which is 3 miles in 25 minutes and how it would be a long time to leave the atmosphere. Jason told him that there are quicker ways to leave the atmosphere by using a rocket for example. Jacob then asked if we could get him a rocket, and Jason told him he didn't have a rocket fund or money to get one. So fast forward to this morning, Jason comes home with four quarters from Grandpa. Jacob is super excited and says " Four quarters is a dollar, and I am going to save these up to buy my rocket ship". I don't have the heart to tell him he can't and how near impossible that is going to be. It will have to be a toy rocket for now.....

Tuesday, July 8, 2014

Bubbling up with T-ball

I signed Jacob up for t-ball and I have to admit that after 7 practices things are going fairly well. I mean, who is counting anyway right? He has parts of it he loves and others you can just tell his attention span is fading. I was a bit picky in what t-ball I signed him up for too. I mean the little guy has NEVER played organized sports and doesn't have a clue about the rules of the game. I signed him up for the more informational and skill learning class. They play one game the entire summer and I was told today it was more a showcase than a game. Thank God! Jacob is a huge sore loser and cannot control his anger sometimes in a loss. Imagine the steam coming out of your ears mad. Well that is exactly how today went anyway when they played a little game with his team. Every time he didn't get the win he used his hands to show he was bubbling up with steam and used his hands to show it blowing out his ears. Of course there are sound effects to go along with this. Not quiet and cutesy ones either. Jacob is not a withdrawn Autistic he is more the explosive and overly expressive kind. He is a sensory seeker and to be honest it can be a daunting  task to give him what he needs. Last Sunday morning is a great example of sensory seeking at its finest and of course at a public restaurant. He hummed loudly and covered his ears to hear it in his head as he banged this elbows on the table for more sound. I tried rubbing him and giving him really tight hugs as this usually works but it seemed to not be enough. You never know when he is going to need more and the wait for the food was effecting us all at this point. I am glad he didn't scream, or yell about where his food was and a quick game of tracing letters on his back and him guessing which ones I traced distracted him while we waited. I need to be honest and try harder myself to work on finding how to help him control these issues. I do have to say that telling us he is bubbling up with angry is much better than before with no way of knowing what he is feeling and him going directly into a huge meltdown. Baby steps I guess....bubbles, steam and all!

Friday, June 27, 2014

The BOOGIE!

  
 So ever since Jacob was little he had a boogie. I have no idea why he calls his blanket this!!!! A blanket that he loves rubbing under his nose, wrapping around his head and sniffing.  Yes I said sniffing. I know it is some comfort for him, sensory or calming, I don't know. We started with these baby blue fuzzy fleece ones and we had backups too. They had "baby boy" on one or baby like symbols on them. Around his 3rd Christmas Santa delivered a space themed one because the baby ones were too... you know...baby.  I think Santa just knew that we needed to grow up in the blanket department. Also a backup Eric Carl one was bought shortly after because a backup always happens to be needed once in a while. I am proud of him recently with being able to use the backup for a longer time.We left the space one at my parents house and a meltdown happened but he was easily diverted to the thought of the backup at home. It has been two weeks and he loves the thought that Papa and Nema are taking care of it.
     This blanket has come with all sorts of challenges. Just like a pacifier we have had to wean him off it. It is only a home thing now. Before it was doctors appointments, preschool, car rides and everywhere. Now  it is trips and at home occasionally he asks to take it for the car ride. Trying to keep a socially unacceptable thing from the public is hard. I mean he is 6 and quiet frankly he has way more socially unacceptable behaviors. I don't think it is going to be years from now until it is not a part of his daily life. We gotta pick our battles sometimes. I thought cutting the nasty corner off and resewing it was going to be hard. I guess he has taught me that he is way more flexible than I thought and I don't give him enough credit. He surprises me in  so many ways and I love watching him grow before my eyes. We all need a good cuddle with our favorite boogie.

Wednesday, June 11, 2014

Double Edged Sword

Jacob is obsessed with "The Magic School Bus" books right now. He sleeps with them, carries them around all day when at home. Reads them at least once a day and  now I made the discovery of the shows on our Netflix account..... so now he is asking to watch them everyday. Mostly the space ones and he seems OCD about it. But like all of his OCD things they change without warning. Like he gets as much out of the topic or show and then is done. I love the books and they have him thinking about space and now the human body. He is asking for additional books and materials on the subjects too. He is pretty much self guiding his own education and it is scary. He is rattling off facts and numbers to me all day long. Yesterday morning we had our Jerry Maguire moment. He blurts out that my brain is 3 lbs , his is 2 lbs and a baby's is 1 lb. So I picture that adorable kid in the movie.....ya he just said that and I say are you now going to tell me bees sense fear? I am amazed at times and frustrated by the constant nagging to watch the Planet Magic School Bus episode for the 80th time.  But I give in once in awhile. It makes me think of the book I just read  The Spark: A Mother's Story of Nurturing Genius by 

Wednesday, June 4, 2014

Just don't ask him to sit still

You can ask Jacob about plants vs zombies and you'll get an answer. Just don't ask him to sit still. Seriously he is the squirmiest kid I know!  It is as if you dumped fire ants on him sometimes. I know its a sensory thing. He needs extra input which is deep pressure or needs to get up and run around. It always seems to be when we are sitting down to eat or he is needing to be still. Waiting rooms are a nightmare!!!!  This was a huge issue waiting for speech and social group this year. I always got irritated by the staff telling him what to do right after I just asked him to. As if them asking is going to magically make him listen.  I bring things for him to do. I have little fidgets like transformers, or puzzle games. Which seems to help but if there is a delay or anything else that catches his eye, he can get antsy. Hugs seem to help but you never know when the need arises. We are working on him expressing this need and to let us know when he needs this extra input. It is slow going, so if you see us and he is running circles around us, just smile and give us a wave and don't forget to ask him about plants vs zombies.

Wednesday, May 28, 2014

Reflecting on Schooling Choices

I am reflecting today on what has happened this last year and what our plans are for next years school year. I take time each week to think about this. Questioning what would be the next step for Jacob, to public school or not. Last year I feel like we put too much faith in the school and in Jacobs abilities to cope with all the changes. He had numerous problems but once we hit a breaking point where he had a huge anxiety attack we were done. Pulled him out, yep pulled him out of school! This was the scariest thing we have ever done. I know he will be fine, and to be honest I have been questioning public school for years.
    The long day was enough for him but when we break it down it is transitions he cant handle. Moving from a preferred activity to a non preferred activity are the hardest. We are looking at a few options for him. Montessori and homeschooling are at the top of the list. This next year is homeschooling with as much ABA therapy as we can do. Since he is academically ahead right now I feel like it is the best fit. Next year will be filling in any gaps for first grade he might be missing. Right now we are working on his strengths which are reading and math. We had him academically tested as well as an IQ test done. We wanted the tests done to help us know where he was and to work on any weaknesses. Right now, the only weaknesses are not academics. At least not kindergarten or even first grade academics for him. He has tested at fourth grade reading level and third grade math. He is a sponge when it comes to these topics so I am not surprised. But I am worried he will pass me up quickly! I am up for the challenge and see what we can work on instead of the the basics. Social and group activities are going to be at the top of my list as well as his writing. He dislikes writing for some reason and maybe even some art thrown in for good measure!

Friday, May 23, 2014

To Dance or Not to Dance

Extra curricular activities or group sports has always been in question for Jacob. Not that he could do them, just that he can get through them.  What I mean by that is he is a control freak. He likes to make the rules and if you don't follow what he expects a behavior is bound to happen. I am talking high pitched screams and temper tantrums of the extreme!  We kind of gave up on looking or trying to do sports, mostly because of cost and due to his time in therapy we thought it might be too much. This last fall we jumped at the chance to sign him up for ballet class. Ballet Class? Ya I know what your thinking but here is why.....
1.He is the most uncoordinated boy I know and could use help with things like skipping and marching.
2.He is in a room full of girls and one other boy. Why is this important?  I want to raise a gentleman, there are manners in dance, letting the ladies go first and I think he needs to work on socially spending time with them. He has the boy thing down pat!
3. It is 45 minutes long. Long enough to get instruction and not cause too many meltdowns due to over-stimulation.
4. It is free, boys are on scholarship there!
5. The staff knows about his condition and have been nothing but helpful throughout the year to work with him and me to get through his quirks.
6. It gets him practice to apply social skills learned at therapy in a classroom setting.
7. You saw that it was free right???????
Tuesday was class and he wanted nothing to do with practicing the same thing over and over for the end of the year showcase. He had me doubting him and putting him in the last show this year. But a friend said let him choose if he wants to be in the show , he said he did and we did. Last night was the recital. I did get some modifications with picking him up early so he didn't have to wait in waiting room after he preformed. There is also the fact I bribed him with ice cream afterwords. But all in all it was great. I have never been so proud of him than I am now. It was scary, things in that moment felt "normal" what ever that is? We are crazy and signed him up for t-ball this summer......

Monday, May 19, 2014

Going to the next country

Imagine your child taking off at a outdoor party to the end of the property. Not just a city lot we are talking here a good 2 acres or more and isn't stopping. He wants to leave the country he says. Leave the country? He is upset because he had to share the teeter-totter and I yelled at him for throwing sticks at other kids who were on the teeter-totter and then hurt his foot on it. Serious extremes....wants to leave the country. I think he just was uncomfortable with all the kids around, not feeling like he fit in. He tried kick ball, thank God tried. I just wish he could feel the joy of playing with all the kids. Maybe it was too much, maybe too much stimulation. I don't know. I feel like throwing my hands up sometimes. But really another country?  Maybe he wanted to be secure at home. I was super excited he could get the opportunity to play with other kids. Yet he doesn't seem to care. Maybe if  it isn't important to him, why make it important to me?  He is happy doing what he wants. Now I guess I need to make sure he stays in this "country".....

A long and bumpy road

  Just when you think things are starting to go your way something is bound to throw up a road block. This is my story. Well my son Jacobs story, through my eyes. Jacob is 6, he was diagnosed with PDD-NOS. For those of you who don't know what it means. Well neither did I, It means Pervasive Developmental Disorder Not Otherwise Specified. I knew something was off with his behaviors when he was a few months old. Like that nagging pain in my knee from an old wound. In more simple teams PDD-NOS is basically the new lingo for Autism. I guess they have to change stuff around to confuse us Neurotypical people. He is all the way at the top of the spectrum which would be Aspergers.  I guess they also no longer want to use as a diagnosis now. Either way my little guy is smarter than a whip but doesn't deal well in social situations at all. He appears to have anxiety problems when under stress. One of the reasons he is now not in public school.....trying to find our normal. I know everyone perceptions of normal are different. I want him to have what I had growing up. Friends, a team and a school and a supporting family. His friends are few but ones who accept him for all his quirks, a team of people who try to the best to get him through his days, and he has always had the last one. Like a anchor unchanged throughout the years. School? Well that's another story....I have started this blog to help me get through the rough times and if it helps others in the process double bonus score! I do not even think I can cover in one post what we have been dealing with for years. I will do my best to cover any back story if I can, when I can.