Thursday, February 14, 2013

I Almost Quit

When I started this blog really I didn't think anyone would read it.  Surprisingly you did and you responded.  It's no secret that the autism community is very divided and because of that I almost quit.  I almost closed this all down because I was tired of the personal attacks and just can't deal with it anymore. But I didn't, I'm still here.

One thing about me I don't quit, I don't let the bullies win. Sorry parent, autistic, non-autistic, black, white, yellow, female or male, really I don't care who you are when you start attacking others you are a bully.  When you start saying I know nothing because I am not you, I'm just a parent, your child's different  etc...  Well I'm sorry yes I do.  I may not know your story, your experience but I do not speak for you I have never claimed to speak for anyone but myself.  

I didn't give up when in a bad marriage I stood up dusted myself off and did what I had to do to survive. Believe me sitting in that courtroom was one of the scariest things I have ever done in my life.

When I had my first child before I graduated high school, I didn't give up I just kept going.  People said I would be nothing well they were wrong, not only did I graduate high school but college as well. 

I didn't give up when my daughter was not talking when she should have been. I went to the school district for help and they gave it to us.  Now you would never believe she didn't talk until age five.

I didn't give up when I got hurt to the point I couldn't work. I fought through years of therapy to try and get back to where I was. I will never go back to nursing, physically I can't. I'm not going to give up. That door is closed so I got my marketing degree.

I didn't give up when we realized Roger was having trouble in school.  Just because the school couldn't figure it out didn't mean nothing was wrong, so I figured it out. I made the rounds with him to different doctors until we found out what the trouble was.

I didn't give up when the neuropsych said your child is autistic.  Nope I asked what dose he need to be successful.  Took the info went back to the school and got the IEP in place.

I didn't give up when a group of people wanted to make choices for my child without talking to him.  I demanded he be present in the meeting and his needs be discussed with him as a full participant.  He can tell us what works and dose not work for him. 

I keep going, but I'm sure you get the point here I don't give up.  Please do not take this wrong I love my readers and followers but I do not do this for you.  I do this for me.  If someone gets something out of it great but that's not my goal.

I can only tell my families story, our experiences, how I think.  I'm sorry I can't change my way of thinking to appease others.  I would never ask someone to change how they think to be accepted by me.  I feel it is really unfair to ask the same of me.  Dose everyone agree with me, No of course not. It would be pretty boring if we all thought the same exact way.  We all see things and experience things differently.  It is unfair to tell someone their experience is invalid or wrong because it's not the same as yours.   The best way for you to drown your own voice out of the conversation is to start attacking others.

Disagree that's great. New knowledge comes from respectful disagreements and discussions   Leave the personal attacks out.  I guess what I'm really trying to say is there is plenty of room for everyone's voice at the table of humanity.  

For now I'm staying, I will keep writing, I will keep telling our story because that's what I know to do. I don't know how to quit.

Friday, February 8, 2013

Raising Cubby: Book Review

I received a advanced copy of Raising Cubby by: John Elder Robison through netgalley.  From the first page this book is great.  John knows how to suck you in from the start and who wouldn't be sucked in when the story starts in a federal courtroom and Cubby is facing major felony charges all because of what you soon find out is a over zealous prosecutor.

This is not just a story of raising Cubby but the story of a man becoming a father.  How he handles having a child and what happens when divorce enters their lives.  He makes up fairy tale stories for his son at bedtime, they battle invading rats in one home while waiting for the new one to be built.  There are many adventures for father and son. From the first page until the last you will be entertained.

There are plenty of twists and turns in the story.  From the Wondrous Dada who told his toddler imaginative stories to the ATF showing up at Cubby's college. It will also make you think twice about ordering things online.  Their trouble began when Cubby ordered perfectly legal chemistry equipment and the man who sold them to him searched him out, really to me sounded like the man stalked him and wanted some major recognition.  John explains how the local police overreacted to a kids chemistry lab.  One of my Favorite stories was how Cubby and John would go to a cul de sac and Cubby would run while John followed. Then one day a crazed Mother felt the need to scold John over it.  Now if you want to know more details of the stories or what happened in court your just going to have to buy the book.

I went to one of John's speaking engagements a  couple years back.  Of course he was awesome as always but he also teased us with this book.  What he teased became a reality.  He had said he was working on a book about his son, but that it would not be the normal doom and gloom parenting a child with autism book.  I have to say he delivered on this promise.  

You can visit John on facebook HERE.  You can also preorder his book which is due out in March from Amazon.

*The opinions expressed here are mine and mine alone. I was not compensated in anyway for this review.*

Thursday, February 7, 2013

Therapies: Why Quitting Was For The Best

*This is our experience. Every persons experience will vary, this is just one families views.*

What is the first thing any parent gets when their child is diagnosed with autism?  The list of recommended therapies   Now if you really look at the list between ABA, OT, ST, PT, CBT, etc.. therapie can become a full time job.

Our case was no different.  When Roger was diagnosed I was handed a list of suggested therapies. Our list included OT, ST, ABA, CBT, social skills and a psychologist. Here the thing about all of these the wait lists are huge.  Some of the lists were almost two years out.  Just calling becomes a job.  Most of the places will either say no room or they just wont call you back.  If you do get in their mindset is not the same as yours.

I called a couple different companies for ABA, one three months later got back to me and sent someone out to do the intake.  First off they normally only dealt with small children not a 12 year old. Second everything was scheduled during school hours, this was more for their convenience than mine.  This meant he missed a day of school to do the intake.  The lady came out and spent about two hours with us. Asked a bunch of questions, observed, all that stuff.  In the end her plan was to stop behaviors she saw as annoying where my idea was more practical issues that I was told they could help with.  I don't care that he taps his foot or paces no big deal. He needed help organizing. Everything from his room, schoolwork, even showering.  This was not her plan.  Before any of that could happen he would need min 20 hrs a week ABA  I didn't feel that was appropriate.  How was he going to participate in after school activities? How was he going to just chill out and not have to work all the time? Basically it was I obviously didn't care because I thought the amount of time was insane. He would go to school then come home and work with ABA until dinner time then go to bed. What kind of life would that be?  After the intake we never saw them again.  They did call a couple of times but unless they were willing to help where we needed help not what they thought was important and take the min time down we were not interested. ABA was out the door before it even began.

Social skills groups, wow don't even get me started what a joke.  I called and spoke to a few. Almost all of them were full plus the cost for a month which was just a few hours on Saturdays was upwards of $800 plus dollars.  When I asked what they did the response was always facilitate social skills. What dose that mean? "Well we give them scripts in a group setting, play games, etc."  So the conversation is forced? "No facilitated by a adult who is trained".  That still sounded forced to me.   The more they talked the more turned off I got. A friend had also told me of a club in town that had lots of activities for kids in a no pressure environment they could pick and choose what they wanted to do and it was only $50 a year. I should mention this was not a social skills group, they never claimed too be any sort of therapy just a club. You see though anytime you get people together over a similar interest in a activity they do interact with each other. If we hadn't moved to a different county we would still be part of them because it was fun.  It may just be me but the best social skills training has not come from a professional but rather just being a kid.  The best way to learn is to get out in the world and experience it. As you experience you learn what is expected and how to act. This goes for all of us.

Speech we did for a year for Roger and three years for Lucy.  Lucy did not talk until she was five and yes I do think the speech therapy she received through the school greatly helped her.  Roger he has a different speech pattern.  No one is quite sure how to explain it but he can be understood.  They worked with him for a while and really nothing changed.  When we sat down with the speech lady we all Roger  The SLP, and I decided that it was time to end speech.  He still does receive some speech twice a month at school but all after school private has ended.  It was not changing anything just using up time.

We also did OT. He has some handwriting difficulties that she was willing to work with. While we had OT for a year the handwriting was thrown to the side about a month in.  We all realized nothing was going to change and it was just stressing him out.  He can use a computer so not worth the stress to force it.  They moved on and did some strengthening  balance and fine motor things instead.  After a year we stopped.  Really all we were doing was spending time in offices taking away from activities that he was interested in.

We never did find a psychologist that could do CBT with him for anxiety.  Once yous say autism they all back away.  Since we moved we do not have the sever anxiety anymore.  I know for many that is not an option but for us it was.  We needed to move and it just happened to have a good benefit.

It's been almost a year since we quit all therapy.  If I had to do it over again yes I would make the same decision   Knowing what I know now we probably wouldn't have gone through all the stress of finding therapist  intake, and spending so much time in office's that proved to do nothing.

In the time since we have moved and ended therapy the meltdowns have lessen.  He is no longer stressed by therapy.  He has a few friends in the neighborhood from school, and he participates in activities.  I truly believe that just being kid and participating in activities he likes such as baseball and Lego club have done more for him than any therapy I could have paid for.  I also believe by never taking the therapy that wanted to change him reinforced to him that there is nothing wrong with who he is.  Yes we have worked to change some behaviors but really that is part of growing up.  All kids have behaviors that need to be changed but there is a difference between changing a behavior and trying to change a person and I for one can not stand behind any therapy that's whole goal is to change a person.

Wednesday, February 6, 2013

Big Deal, Little Deal: Not Everything Can Be Huge!

*Warning: I can guarantee this post is going to piss some people off. There will probably be cursing and most will go against the typical parental stance. Please bare with me, I know its long and rambling  So here goes nothing*

One of the early scripts we were taught by our neuropsychologist was big deal, little deal.  This was used to help with emotion control.  If someone touched you pencil rather than start yelling stop and think is this a big deal or little deal.  Well it's a little deal so I'm going to move on.  Someone hits you well that's a big deal so I should tell someone. You get the point right?

Many parents need to learn and use this script.  Not everything your child dose is huge.  Oh they did their homework without a fight. Hey great job yes, huge not so much.  We all know the type everything their kid dose is huge.  Johnny crossed the street huge, Johnny used a tissue huge, Johnny wrote his name huge. Johnny flushed the toilet huge. (hey can Johnny come teach my kids what the magic lever on the toilet is for, because they don't know) After you hear huge, huge, huge it loses its meaning.  What happens after that when Johnny dose something huge like give a speech to the whole school it's overlooked because we have all heard how huge it was that he swept the floor.

I've talked with my kids about it.  Roger once had a teacher that said everything he did was huge. It really bothered him because his line of thinking was I'm not doing anything different than my peers so why is what I'm doing huge? In a way you are telling Johnny I don't expect you to turn your homework in on time so its huge that you did. Wait hold on that is something that is expected of all students in his grade.

Roger is in the school band.  Now while we do have a exit strategy in place in case he gets overwhelmed and it is to much he is expected to stay and participate in the concert.  Sure it would be easy to have it written up that while he will be in band class because of anxiety we are just going to exempt him from performances.  That is not doing him any favors.  Making accommodation to make sure he gets the full benefits absolutely helps.  When he stays and preforms just like the rest of the band. Is that huge no its expected for him to do that.  Now if he stands up and does a solo during the concert huge.

One of the things I hear most from parents is how they want their child to be accepted in society for who they are.  This is great but when everything is huge you start to give off the impression that your child can't fend for themselves so everything they do is amazing and huge. When this impression is given people tend to use kid gloves no matter the persons age.

By no means am I saying don't celebrate accomplishments, we all do it.  Just remember sometimes a how does that make you feel does more for self empowerment than that's huge. Asking how the event makes you feel allows for self expression and really be able to think about what you did.  That's huge is more of a brush off. Roger hears that's huge and thinks the person didn't think he could do it and adds to self doubt. Where as asking him after a concert so how did that solo feel, gives him a outlet for his self pride.

I get it I do.  How many of us have been told your child will never, and then they do.  Or they work really hard at what is seen as a simple skill and they get it down.  Yes that is huge and amazing. Drinking all their milk no really that's not.  I'm saying tack a step back just like we ask our kids to do and think big deal, little deal.  We spend so much time teaching all kids that not everything can be a big deal that I think we forget it ourselves.