School year preparations … the Subsititute Letter.

Hi, my name is Andrew G. Some people call me Roo.

I cannot tie my own shoes, please do not embarrass me.

I do not always make good eye contact, it doesn’t mean I’m not listening or that I’m being rude.

I like things to stay in order, things like my schedule, the place I stand in line or the way things are in the classroom.

I get over stimulated if there is too much noise or activity going on around me- this will look like heavy breathing, deep sighs, intense head rubbing , clenching of fists or squinting of eyes.

I’m pretty smart, but I have trouble getting jokes and sarcasm.

I struggle the most in the hallway, cafeteria, and the playground.

It takes a village …

You know that moment when the school year comes to an end and your looking back to gauge the successes and the failures. You want to thank the people who helped your child succeed, who took the time to get to know them and accept them for who they are and what the are capable of. You also want to review the failures so you can change them, make them better. You are praying that you didn’t screw him up too terribly bad.
To be honest, this past school year was pretty amazing. The team of individuals who work with my kiddo are truly amazing! His teacher, the sped teacher, the principle, the aides, his case manager….it takes a village! I look back and see so many more success’ this year than I ever have before. This kid is amazing and he works very hard to conquer his challenges!
Sometimes we Autism Mommas are hardest on ourselves. We give all these people credit for how far our kids have come and we forget that we have too worked incredibly hard for our kids. When we are in the thick of it its exhausting and sometimes painful, both physically and emotionally, to struggle with our kids and then when we get through it we look back and note how truly amazing everyone is who helped us succeed and all the things we could have done better.
I got a card in the mail from a teacher at Roo’s school. School was over! It wasn’t a list of things Roo is struggling with, a note to tell me some new behavior to work on, or an at a boy on some trivial thing he got right. This year a teacher at Roo’s School blew my mind. It was an award, not for the kiddo, but for me! Mom of the year! I am not telling you this to toot my own horn, but to tell you how encouraging it was to receive.
I opened the card and tears just streamed down my face. In the onslaught of issues that come with being an Autism Momma: the sleepless nights, the worry, the determination to get it right, to do what’s best for your kiddo, to fight for him, to fix it when you get it wrong, to try and pre plan everything, to support the teachers who get him, to fight the ones who don’t, to lose friends who don’t get it, to gain new ones who do, the desire to be alone, the loneliness … the feeling like no one gets it. I get this note, this card that says hey I see you, I see how hard you work to support your little man and the staff and to help us all succeed and you are a Rock star!
I have had plenty of people say things like… a little discipline goes along way, your need to be more consistent, he doesn’t need therapy he needs a good old fashioned spanking, in my day we didn’t call it autism we called it lack of parenting, etc.
But I have never had anyone say… hey you, you with the bags under your eyes, who’s running on two hours of sleep and more coffee than can possibly be healthy, who holds her son accountable for what he can do and gently stretches him to learn what he can’t do, who gives up little pleasures in life so you can afford things like therapy and the food he has to have, you label reading, internet researching, doctor office waiting room jockey, pony tail wearing Rock Star!!!
For a moment I felt awesome!! Don’t get me wrong, my kiddo works incredibly hard to overcome his challenges and it does take a village to support him in this process but it’s OK to acknowledge that I too am part of that village!

All the others.

I know its been a while…life that’s all I can say.

I did a post a while back about how we were battling the wrong “A” word.  It was a life changing moment for us, realizing that he wasn’t a tiny little ball of anger, but a tiny little ball of anxiety.

Honestly, he’s had a phenomenal school year.  Up till yesterday, I had only been called to the school once and they had it under control by the time I got there.  We have set up a 504, we have precautions in place.  He has an amazing teacher and sped. teacher, who are more than willing to try to figure him out.  They put him in the gifted program once a week. Life has been good, not perfect, but good.

Yesterday, the star’s did not align.

We woke up late.  He is supposed to be up by 5:45.  He was up at 6:15.

He missed the bus. It comes at 6:25. Ten minutes are not enough time to get ready.

He couldn’t find his back pack.  I gave him another one.  His bag is supposed to be black, not orange.

(At this point he is pacing back and forth from his room to the front door, and then pulls out all the Xbox cases and lines them up across the living room.  Hey if it works, go for it!)

Daddy drove him to school.  He is supposed to ride the bus.

He has a sub.  No one told him, he is distraught.  There is no plan, we did not discuss it, it’s not supposed to be this way.  How dare his teachers child get sick.

The sub does not follow the plan, there’s a play practice for the whole third grade, she lines them up in a different order than they are supposed to.  The kid cracks.

Nothing went his way at all, yesterday.  Anxiety creeps in and he can’t function.  The uncertainty of what will happen next bowls him over like a tidal wave.  I try to talk to the sub, explain how his mind works, she says all the others are handling it just fine.  But, he’s not all the others!  He is Roo!

Roo needs routine.  He needs structure.  He needs the security of knowing what comes next, because reading happens at the same time every day and its followed by math everyday.  He needs consistency.  He needs noise control in the room.  He needs you to stop asking him the question repeatedly, to give him time to process and answer.  And when all that fails, he needs to know that you are in control and that he is going to be OK.  He needs to trust you for that to happen.  And, I’m sorry Ms. Sub but he does not trust you because he does not know you and that means that the chaos that ensues from your style of teaching is going to throw him over the edge.  If you choose not to follow the directions of his 504 that is on you.  If no one told you that he has a 504, then I’m sorry.  I hope your day is better tomorrow.

 

 

BREAKING NEWS….8 yr old Missouri boy is cured!!!!

DISCLAIMER:  Before you go all postal on me.  I am not a “cure” person.  I do not believe that autism can or should be cured.  It’s just that a little sarcasm does the psyche good and I don’t look good in jail house orange.

THIS JUST IN…

An 8 yr old Missouri boy has been cured of Autism. Per his case manager, who by all reports has lost his damn mind, the boy who presented several years ago with symptoms of Asperger’s Syndrome and has now been miraculously cured. 

It was in Kindergarten that the boy first received an Asperger’s diagnosis.  After discussing some of his unique behaviours with his parents, his Kindergarten teacher strongly urged his parents to seek independent diagnosis from outside the school system.  His parents did that and after going thru the diagnosis process it was determined by an outside source that the boy did in fact have Asperger’s Syndrome.

According to the Mayo Clinic, Asperger’s Syndrome is a developmental disorder that affects a person’s ability to socialize and communicate effectively with others. Children with Asperger’s Syndrome typically exhibit social awkwardness and an all-absorbing interest in specific topics.  Doctors group Asperger’s Syndrome with other conditions that are called autistic spectrum disorders or pervasive developmental disorders. These disorders all involve problems with social skills and communication. Asperger’s Syndrome is generally thought to be at the milder end of this spectrum. While there’s no cure for Asperger’s Syndrome, if your child has the condition treatment can help him or her learn how to interact more successfully in social situations.

After fact checking with several agencies that specialize in Autism Spectrum Disorder’s we are baffled at the turn of events that have unfolded here.  It’s nothing short of a miracle. 

UPDATE TO EARLIER STORY:

It seems folks we have been misinformed.  The boy thought to have been cured of Autism, still in fact has Autism.  His new official diagnosis is PPD-NOS, which is in fact an Autism Spectrum Disorder.  We tried to follow-up with the case manager who originally reported about the cure but he has no comment.  No comment probably because he knows that he was wrong and all he had to do was check Google to determine his statement made him look like a complete asshat!

 

**I think I need to follow this sarcasm with a short disclaimer that his case manager up until that very moment has been an absolute gem and has been instrumental in the leaps and bounds my boy has made in the last year.  I don’t know if he was having a rough day or if in fact he didn’t know that what he was saying was completely ignorant, but we love him dearly and can’t thank him enough for the skills he has helped teach our boy. **

Change is Hard.

This story starts back in October.  We were at our first and last IEP meeting, it went well, they decided that he was too high functioning to qualify for an IEP and that they needed to do further testing to prove that he was just fine.  It was after this meeting that we were informed that our case manager would be taking a promotion and Roo would be getting a new one, or we could opt to go intensive and keep Nathan.  Roo loves Nathan and has grown leaps and bounds with him so we opted to go intensive.  Unfortunately, that only bought us 90 days and we knew it. 

Then jump ahead to last week we are informed by Roo’s therapist that she is taking a promotion and we will be getting a new therapist.  Our new therapist starts Jan 6th, our new case manager starts Jan 10th.  Let’s just say therapy did not go well last week, Roo was pissy and fidgety.  Everytime she asked him a question he would stare for a while and then say you do it.  He was quiet the whole way home.   The rest of the week was tough for him, he has been on edge and balancing that thin line between aggravation and meltdown all week.  Change is hard for my kiddo, and honestly his bubble is nearly impossible to enter.  There are a few who make the cut, Nathan and Dena were two of the few who were instantly given access.  My boy is hurting and scared.  Hurting and scared translates into angry and aggressive in our world. Thankfully, he is at a point where redirection has worked. 

Fast forward a few weeks… School will be letting out for Christmas break soon and will be out for two weeks.  No matter how structured and routine we try to make that time the transition back to class is difficult for him.  It is after this break that we see Roo’s worst behaviours.  I am worried that trying to navigate this change without Nathan and Dena is going to throw him over the edge.  He will have his first session with the new therapist the day school starts back.  Will he talk to her?  Will it make his anxiety worse?  Is the bottom going to fall out?  Will all the work we have done over the last year fall apart or prevail?  Will he use the new tools he has learned to overcome his anxiety? 

My prayer is yes he will prevail. He will get anxious and scared but he will recognize it and use his coping strategies.  There will be the phone call at the end of the day to say he executed the day like a champ.  

 

 

So its been awhile…

Just realized it’s been awhile since I posted.  Life just happens and we get caught up and then FB starts acting wierd and I just haven’t had the gumption to mess with it.  So there’s all of that 🙂

So, here’s an update on our little corner of the universe…

School… we are having the BEST school year ever!!!!!!  He has had ZERO (0) meltdowns at school! Praise God!  It has lot to do with an amazing teacher and support staff, his amazing behavioral therapist and case manager, being accepted into the gifted program and actually being challenged in school, and a tremendous amount of prayer!  Just got his mid term grade card, all A’s.  How on earth do you get 118%?  This kid’s mind is a beautiful thing. 

Sibling’s … so we are actually getting along!  Roo has found his voice and is so much better at communicating with them.  It has made a huge difference and the fighting is so much more like normal sibiling stuff.

Holiday’s … yeah so we are hanging in there.  As long as there is no decorations (other than the tree), no colored or blinking lights anywhere and a hole he can hide in when the world is all too much … I think we will be ok.

He cries for a man he never met…

He saw on the news this morning that it was Veteran’s Day and he sobbed, wailed uncontrollably.  His small frame writihing with grief and pain.  He cried out for a man of integrity, a man who fought valiantly for the cause of freedom, a man who gave up a spot at OCS so that a young boy would not go in his place, a man who fought not for the powers that be but for freedom and his own little family, a man who never met his youngest son, a man who was not only a soldier but a son, husband, father, brother…

From the depths of his gut comes a moan that is full of grief and agnst…I miss my Uncle Jesse!!!  He grieves for a man he never knew!  His Uncle PFC Jesse A. Givens was KIA in Iraq in 2003.  Roo wasn’t born till two years later, and yet from time to time he grieves for him like he was his best friend.  The qualities of his Uncle that he grieves for are genuine but how he knows them I have no idea.

Jesse is a well known casualty of war, he was the first soldier to be killed after the President declared the end of major combat in Iraq.  His last letter home was featured on an HBO special, Montel and Oprah.  There was even a orchestra that rewrote it and created an amazing symphony based on his letter.  It is emotional and touching.  The nation has morned the passing of a great soldier.

We mourn more deeply… He was so much more than a soldier.  He was a son, the second of five brothers, a devoted husband and the father of two amazing young boys; one of which was born 28 days after his dad’s passing.  He was artistic and funny. He loved to experience to joy in life and yet didn’t take crap from anyone.  He is missed daily. He is our hero!

 

 

 

 

What I learned last Sunday….

My husband and I have started attending a parenting class at our home church.  We are only three lessons in and so far it has been pretty good; even if the video’s are extremely outdated, the principles are sound.

This past week we learned about child centered parenting and the many troubling situations it causes.  My pastor talked about how child centered parenting is the down fall of our next generation and the impacts it is having on us now and how perilous the future generations will be if it continues.

I have to admit I agree with him, somewhat.  As a person who grew up in a home where you towed the line and did as you were told it unnerves me when dealing with kids who are terribly rude and disrespectful, not only to me but to themselves as well.  As a substitute teacher and a volunteer sunday school teacher, I have seen the ugly side of child centered parenting.  With that being said, because I grew up in a home with two authoritarian parents, I have seen the ugly side of that as well. 

I try to strike a balance with my kids.  I want and expect them to follow the rules and be respectful, but I also encourage them to think outside the box and discover who they are for themselves.  I want them to be their own unique person and not what I want them to be.  Anyway, as I was sitting there in class listening to the information being presented I was fully aware that I do have areas in which I participate in child centered parenting.  I was trying to process if those were areas I needed to change or if I had set them up that way for a reason, when it was decided that I needed to be used as the example for child centered parenting.

Honestly, I had expected it to some degree.  I do not expect my children to be silent unless spoken too. I expect them to have thoughts and opinions and I encourage them to share them with me. I figured this was their issues, but it was not.

Their issue was how I handle Roo. I give in too him too much, I helicopter too much, I make excuses for him too much. SERIOUSLY!!! I guess we are back on that he’s not autistic, he’s just a brat kick! I was so mad! The more he talked the more angry I got… Honestly, there was a time when I was practicing child centered parenting in a negative way. We didn’t know what was going on with Roo, and I would do anything to make it stop … the meltdowns that is! I would give him what I thought he wanted and do everything I could think of…just to stop or prevent a meltdown. We don’t do that anymore, we haven’t in a long time.

However, there are issues my son can’t help. There are sounds he can’t process and textures that are overwhelming. He doesn’t handle crowds or change well, so yes I prepare him for times that these things are going to take place, and I don’t force him to be uncomfortable all the time. And yes I stopped taking him to your Junior Worship program because the music is too loud and the kids are out of control and your adults can’t handle the awesomeness that is my Roo. If that makes me a child centered parent then so be it, I guess what we learned in that class is why God gave him to me and not to you!

Vent post

This will probably lose me a follower or two, but so be it. I am so ticked off and have to get this off my chest.

How my view-point has changed over the last eight years…

Pre DX: WTH????? WTH is wrong with this kid? WHY??? Why does he do this stuff? Why doesn’t he get it???

immediately following DX: He can’t help it. He has Asperger’s. It is what it is. This will be the rest of our lives, so we might as well settle in for the long hall.

1 year after DX: WTH? Why can’t the school just get that he can’t help it? I have to cater to him too. It is what is!

Intervention from a fellow Autism Momma : Asperger’s is NOT an excuse for bad behavior!
((LIFE ALTERING)))

Lightbulb!!!!

2 yrs after dx: We have come a long way … yes his still has asperger’s! Yes, he still has meltdowns! But it is not an excuse for bad behavior. For every action there is a reaction.

My son has Asperger’s! My son melts down, a lot!!! Our lives are different from other families. I do not hold my children to different standards. The rules are the rules. For every action there is a reaction. I will not walk around on egg shells fearful of the next melt down. Yes, I do everything I can to make sure the necessary supports are in place for him to succeed. But if you trash my house, you will clean it. If you break something of mine, you will replace it. If you break something of yours, I will not replace it. You will not scream, kick, hit or bite me. You may melt down in the safety of your own personal space. If that not acceptable, it’s not a meltdown, it’s a fit and I will respond accordingly. I realized that not every kid on the spectrum is capable of handling this type of parent. I do get that. However, I will say this. My husband, myself, teachers, support staff, case managers, therapists and many, many other people have worked diligently to get us to where we are at. Just because we have worked our ASSES of to get here doesn’t mean he’s not autistic!

2 years ago if I told my son to clean his room he would sit in a heap in the middle of the room and scream and throw things. I then would go and do it for him. After lots and lots and lots of work and reinforcements we have come up with a system that works for us. I made him a detailed list. Ya know … do this … do this…etc! With this list he can and does clean his room. If he trashes it…he cleans it. I have similar lists for all the rooms in my house. He trashes it .. he cleans it! Is he happy about it … No! My job is not to make sure he’s happy, it’s to make him productive member of society when I am not here to fix things. Funny thing happened when we started holding him accountable, he stopped trashing my stuff mostly!

Rant over.

Here we go… again?!?!

A spectrum (plural spectra or spectrums) is a condition that is not limited to a specific set of values but can vary infinitely within a continuum.

 

The autism spectrum or autistic spectrum describes a range of conditions classified as neurodevelopmental disorders and are characterized by social deficits and communication difficulties, stereotyped or repetitive behaviors and interests, and in some cases, cognitive delays.

It’s a spectrum people!  I can’t even process in my brain why it is so hard for people to figure the concept of a spectrum out!  Why for the love of God is it so difficult?!?!!?

I know, I know! You work with some guy whose sister’s friend’s aunt’s brother’s third cousin has autism.  And they are nothing like Roo, so you can’t possibly believe that he has autism, because…

… kids with autism…

1.     don’t make eye contact

2.    don’t talk

3.    can’t possibly function in the mainstream classroom

4.    don’t have creative imaginations

5.    dont’ have the ability to make friends

6.    don’t hug or show affection

7.   don’t have empathy or show sympathy for others

8.   don’t have competent brain function.

Seriously, you exhaust me!  Yes I know, my kid blows your mind with how unautistic you think he is!

This week we had to have an IQ test at school.  He did very well!  I’ll spare you the details, but needless to say it has started an onslaught of fuss from the peanut gallery!  “See I told you there was nothing wrong with him”  “He not Autistic he’s bored!” blah blah blah  

Honestly, his IQ has nothing to do with Autism, and actually according to the IQ test itself his autism actually reduces his overall IQ because of his “social deficits and communication difficulties.”  The test does not change the fact that he has SPD, nor does it chage the fact that he has difficulties with emotions and communication.