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Wednesday, May 30, 2012

A Prayer for Lisa Marie


Lisa Marie is the mother of a nearly 14 year-old, adolescent girl on the spectrum.  It seemed like an ordinary meltdown over doing the dishes...until it wasn't.  It ended in an attempt to take her own life.  She is now in a behavioral hospital six-hours away from home.  Lisa wrote to me on the facebook "Confessions" Page .  It made my heart heavy with sadness and scared me at the same time.

I started to say this prayer and then I decided to write it, because there are many who are living through adolescent depression associated with Aspergers and just feeling different.

This is my prayer for their family and for all of us raising kids on the spectrum...

I pray today for strength for Lisa Marie and for all of us who are raising these special children
I pray that you help her make the best decisions for the care and healing of her daughter
That she is able to hold it together for her struggling girl and the rest of their family
That once her girl comes home she is able to put the right supports in place for her, for her education and her continual care
That you tickle her heart...help her to realize that she is doing her very best
But not everything is within her control 

I pray that her daughter will come to realize that her future is BRIGHT
That the world is at her disposal, that she can do anything and everything she really wants to do
I pray that she comes to know and internalize that she is loved by the people who really count.
I pray that today she is in capable hands, who will help her make it through this difficult time
I pray that she will find continual support from professionals once she makes it home.
Help her to know that this is rough period of time in her life...but it doesn't define her life
She will grow into a beautiful woman
That you gave her special gifts that she will share with the world
You gave them to us all
Help her to understand that IT WILL GET BETTER
I pray that she finds that special someone or someones who will come to know, understand and accept her for exactly who she is.
Help her to realize that anyone who isn't kind...isn't worth knowing and certainly is not worthy of her giving up her future
I pray that she knows that she is not alone.
That there are many people who are praying for her right now.

Please hold this family in your hands and lift them up.

May anyone who reads this prayer share these thoughts with their own children over and over, or internalize them for themselves until they know for sure that they are worthy of the life you have given them.

Amen

Friday, May 25, 2012

Surviving the IEP (Part 2)

Editorial note: The past few days have been an absolute circus.  So this post had to be put on the back burner while I tended to the never-ending needs of my family.  Finally here is Part 2 of this post

By fellow Confessions Mama --Lelinda Faulk

Accommodations


After spending a great deal of time preparing for the IEP meeting which I wrote about in "Surviving the IEP -Part 1", we came up with the following accommodations for my son.  Note: there are many other accommodations that may be appropriate for your child.  This is just a good example of a place to start.

  • He will have access to a fidget item for self-regulation, for tactile reminders, and visual prompts for when he becomes off task and unfocused or if he needs assistance with stemming.
  • He will have shortened assignments and increased time to complete assignments 
  • daily assignments will be broken down into shorter two step tasks as appropriate with completion expectations tied to a rewards system (positive reinforcement)
  • Implement a transitional warning schedule to help with the transition struggle from subjects, concepts, or assignments throughout the day. 
I was adamant about proactive not reactive communication on a regular scheduled basis and as needed with myself, the general education teacher and the special education teacher.
  • The teacher will send a chart home every day and meet with his special ed teacher every three weeks (if this isn’t appropriate or the concept is brand new, request they meet more often.) 
  • Teachers cannot and should not use slang, sarcasm, or cycism when giving instruction, expectations or redirection. 
He struggles with communication in the sense of being very literal and often interpreting words to the most common form. Very literal request in the simplest form works wonders.
  • He will keep a daily agenda book in place for homework (he will write down assignments using assistance of a peer partner, and it will reviewed by the teacher for completion. 
  • He will have verbal reminders to turn in assignments and a peer partner to assist with functionality throughout the day. The teacher is to closely monitor this relationship and adjust as needed.
  • He will have a red card to place on his desk when further instruction or clarification is needed. 
  • He will have the opportunity to retake any assignments he fails after being retaught the material (His IQ is superior, there’s no reason he shouldn’t master elementary school) 
  • For standardized testing formal or informal he will take in a less stimulating environment and have the opportunity to read the test to himself out loud along with have extra time. (Keep in mind if your child takes ANY modified versions of standardized test he will not be eligible for entry into a university directly after high school.  They may have to graduate on an alternative plan.  Depending on your plans, and your child’s goals this is something to think about. 
  • Written assignments (short comprehension answers) he can verbally give answers to the teacher.  
  • On written short story or essay assignments he will have concrete topics or a concrete variation of the topics (instead of writing about love or friendship he will write about traits of a good friend or a biography on a person he loves)
  • He will not participate in P.E.  He will obtain and meet his physical education requirement through outside Fitness.

I think the most important part of the ARD is to know your rights, and have an idea of some accommodations you’d like to see or try.  Remember “advocate” really means pester.  However,  you catch more flies with honey than vinegar, so you may have to play nice, yet insistent to get what you need for your child. If you’re unsure...do not be afraid to ask for it.  The school may not be able to meet the specific accommodation but may come up with something comparable. 

Communication should not stop with the ARD.  Keep speaking with your child's team regularly. When people know you are watching and involved in your child's educational process...they tend to do more.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Special thanks to LeLinda for putting all of this information together for us all.  I love my Facebook "Confessions" Community  ~~Karen

Monday, May 21, 2012

Surviving The IEP

Guest Post By: LeLinda Faulk -Aspergers Mom of  her beautiful, brilliant son, who is going into the 3rd grade in a Houston, Texas public school. 


Edited by: Karen -Aspergers Mom

I’m just a mom of an Asperger’s kid, who survived an ARD.  Some states call them  I.E.P. (acronym for Individual Education Plan) meetings.  Here in the state of Texas, our goal planning meetings are called ARDs (acronym for Admission, Review and Dismissal).
   
ARD’s are SCARY!  This was my 3rd one so I knew what to expect. Preparation is everything!  It’s so important to know what works for your kid. The good thing about it is, you know your kid better than anyone else. I’m not an educator. I wouldn’t even comfortably call myself a kid person. I do love my son immensely and want him to have a fair chance at success.  I will give you some resources that I found helpful and I’ll even share some of my ideas for the IEP and BIP (Behavior Intervention Plan).  

The main thing I’ve noticed is the old saying is true; the squeaky wheel gets the grease. You have to make your voice heard and your presence known regularly.  It's important that the educators working with your child know that you plan on being a big part of your child's education process. 

If you’re brand new to ARD’s,  the first thing I recommend is that you at least chat with an advocate. There’s a chance they’ll be able to incorporate some things you didn’t even know about.  We used the ARC of Houston.  Our advocate did not recommend specific accommodations, but she was insistent that we get what we wanted and made sure all evaluations and testing were performed to ensure we could get the right accommodations.

Special Education laws can be tricky. I don’t know if they are designed more so to help or hinder the education process. Just know there are ways to get what you NEED accomplished. If the first person you call can’t help you, call someone else! Don’t give up!  If you do not push for your child his education...I can assure you no one else will.  Here are a few things you can do to prepare. 

  • You can begin looking for Advocates here --Autism Speaks Family Services Resource Guide Find your State - There’s an Advocacy bullet listed 
  • You can also try COPAA -Council of Parent Advocates and Attorneys
  • I would suggest becoming familiar with the Wrights Law.com.  If you speak in technical/legal terms or can interpret it, it’s VERY useful. You'll kind of freak the committee out and they will believe you actually know what you're talking about.  They will be less likely to give you the old okie doke. 
  •  Your State Education Department's website will have resources, contacts and phone numbers listed.  Call and ask questions.
  • Your local School District's Special Education Department is also another resource.  No matter how intimidating ‘the district’ may seem call them and ask about services specific to your child’s needs. 
It turns out our district has an  Autism Specialist who’s a Special Education Coordinator for the district. Plead your case to them; ask them to be a part of the ARD. I have also invited our Special Ed. Coordinator to teacher meetings when the IEP wasn’t being followed. This is the person who can  also facilitate the training for your teachers. Make sure they know your kid is out there.  Before my contact she had never heard of my kid and she manages all Autism plans for children on the spectrum. There are also TOSA (teachers on special assignment) who specialize in training teachers to meet the needs of children on the spectrum. Had I not called we’ve have never been offered these services.

By the time the ARD is scheduled you should already have plenty of contact with your child’s teacher(s) and I’m betting the school administration. I’ve found it very beneficial to play nice as part of a team, even when I bitch moan and complain...I remind them we are a team.  I specialize in my child, and they specialize in education. Together we will get this done, and we need ALL involved to play our roles.

I learned by my second ARD meeting that no one was very forthcoming with suggestions or accommodations. It was a lot of, “What do you want us to do?”  This time around, I was determined to come up with my own ideas. Here's what I did:
  • I googled, researched and read. By the time it was all said and done I had printed over 25 articles and consolidated them into 5 pages of handwritten notes. 
  • I asked around to other parents and even had Andrea from My Aspergers Teen.com send me the accommodations they had just put in place for her son.
  • There’s also a Facebook page called Autism Discussion Page GREAT INFO!  The moderator is able to break down what works and why. I have sent several of his articles to my school administration. They’ve really helped the principal ‘get it’.   
In our specific case our Aspie is in an advanced placement program called AIMS, the program is for Gifted and Talented students through 6th grade.  The main benefit of the AIMS program is the children are taught with other gifted students.  The classes move at a slightly faster pace allowing for various projects that general education students don’t do.  The AIMS class involves extra homework and class work that don’t coincide with my son's, “If I know it,  why do I have to keep practicing it?” mentality. Since we aren’t sure of placement moving forward, I requested both sets of teachers be trained on how do teach an Aspergers student over summer break. Our district Special Education Coordinator was present, so it was approved.

I also learned in the meeting there will be 2 possibly three other children on the spectrum mainstreaming next year. I asked to have the group of them clustered with a well-trained team to provide them like peers in a neurotypical setting with appropriate staff members in place to support.  I brought of comments that my son has made like “Kids at Social Thinking are normal like me” and “Why are people at school so weird, they always ____” it’s important for him to have peers he can relate too.

They agreed.

The moral of this story...ask and you will receive.  Know your rights....and be prepared.

Click Here: Part 2 "Surviving the IEP -Accommodations"

Friday, May 18, 2012

Dream Deferred

It's so many things right now.  I'm constantly fighting fatigue.  Having difficulty focusing.  Feeling like very little is being accomplished on my long list of "to-do's".  It's the searching, hoping, praying, collaborating with doctors, and teachers, insurance companies and therapists.  It's the walking on eggshells, the barrage of negativity surrounding me, the field of landmines I walk through daily, trying not to trigger an explosion.  It's not natural...it's not human inclination.  It totally goes against the grain of "fight or flight" that we are inclined to do when we feel like we're under attack.  It's the maintaining control because he's out of control.  It's the loss of the dream -that he would be my easy child.

You see...his light shines so brightly.  There is so much intelligence and so much love in his heart, so much kindness and yes...empathy.  He is the one who I KNOW for sure will be all he can be.  He is the one with the internal motivation.  He is the one who wants so much to help others.  He is the one who already has goals of getting a Masters Degree and maybe a Ph. D.  I mean who talks about that when they're 12?

He is the one who use to be the attorney for his brother, when he was acting out.  "Mom he doesn't mean that.  He's just trying to... Don't be angry with him." He is the one who said, "I don't want to turn into one of those disgusting teenagers, who curses and disrespects their parents."

He's the one who is this wonderful artist, this deep thinker, who always thinks outside of the box.  He's the one who wrote this wonderful essay, Freaks Geeks & Aspergers about autism acceptance.  He wrote this of his own volition, just a few weeks ago, and read it on the P.A. system for the entire school to hear.  He is the one who gets notes sent home about what a wonderful student he is...what a great leader he is.

And yet...right now he is in such pain that it's palpable.  He's falling apart, yet he's wound up tight, like a sling shot.  He clenches his fist ...his body trembles with anger.  He's a stick of dynamite with a short fuse.

So...I speak softly.  I  indulge him.  I try to make him more comfortable in his own skin.  I attempt to surround him in a protective bubble, keeping him away from the triggers as much as possible.  It's a lot of work!  And it's feels like all for naught.

I lay in bed next to him...trying to massage the stress away with lavender oil and a soft voice of reassurance.  He turns around and starts biting the sheets, to show me, 'What you are doing is not working.  Just leave me the fuck alone! I'm miserable! And you can't rub it away with lavender oil or Gaba cream!'

"I'm working on getting you a new therapist who really knows Aspergers," I say.
"I can't do it!  I can't do anything.  It won't work.  I can't start anything new right now.  I'm tired of this. I'm tired of feeling this way.  Nothing helps! I want to feel better now!"
And with that...the tears well up within me.
"I just need to be locked away from people!  I can't go to school like this!" he says.
That's it. The tears stream down my face.  I loose my voice.  I can not speak.
I hug him. He feels my tears on his shoulder.
"Don't cry mom.  I don't want you to cry.  Why are you crying?"
"I just want to make this better for you and I don't know what else to do."

He can't handle my emotion.  I can't control it, although I try.
He asks for his father.  He needs someone who will stay in control right now.  He needs someone to help him understand, Why in the heck is mom crying?

I am crying because in this moment...I feel the loss of the dream.  The dream that he is the one.  The one who doesn't have the problems like his brothers.  Red -with his autism, anger, outburst and difficulty with school.  Slim -with his anger intelligence, and dumb life choices.

But alas Blue is not perfection personified.  He is human.  He has autism, anger and anxiety.  He is a teenager and he's got crap to deal with just like the rest of us.

As I tell him, I also have to remind myself...
This will get better.
I don't have the magic answer
I can't snap my fingers and make this all go away.
It's not the loss of the dream.
It's just life.
It's a dream  deferred.
________________________________

Editorial note:
Today, I'm supposed to be posting this dynamic piece about I.E.P's that one of my Asperger Mom pals from my Confessions Facebook Community wrote for us.  Only...I can't focus long enough to edit it and get it up on the blog.  I needed to vent today.  Look out for this article, full of helpful hints on Monday.  That is...unless all hell breaks loose before then.  

Thursday, May 17, 2012

My Prayer

Editorial Note: 
This was previously published in 2010.  It was also published on Autism Speaks Blog -In Their Own Words .  At that time,  the prayer was mostly for Red.  Now that Blue is in the shallow end of the teenage years, he needs the same prayer, so I have edited it slightly. 


I am throwing my hands up to this thing called Aspergers today.
I don't know what else to do but pray for my children.
I am praying for their minds to be opened to new possibilities.
I am praying for love, acceptance and understanding from his peers.

I am praying for them to find a special friends or group of friends who will be there for them and accept them just as they are.  I know they're out there.

I am praying that they will listen and hear when others are trying to help  -that they won't be so locked into their own thought process that they can't let new insights seep through and actually help them to change their lives for the better. I realize that I can not do this for them, as much as I want to.  They have to do this for themselves.

I am praying for guidance to advocate for them
To put the right supports in place for them
To parent them in the most loving and honorable way

I pray for PATIENCE.  I need a large dose of that.

I pray that those who are employed to support them will do their jobs to the best of their ability
That they will not let them fall through the cracks.
That they will see the possibilities in them.
That they will assist me in teaching them self-responsibility and that they will do so in a loving way.

I pray that they will not give in to depression and self-loathing.

I pray that they will make it through this day, this week, this year having grown, learned and matured.  That they will head into the future being everything that they can be.

I pray that they will grow up to be a positive contribution to society
That they will be confident and able to take care of themselves and be responsible adults

I hope you will pray with me.
If you don't believe in prayer -that you will meditate and send positive thoughts our way.

I have a tall order here -and we need all the help we can get.

Please share this prayer with your friends, family and other Special Needs moms. 

Monday, May 14, 2012

Aspergery Mother's Day

This was the best Mother's Day ever in our house...and that is not to say that it was perfect, but it was really good.  


I am awakened at say 8 a.m. with loud banging on the door.  It's Red of course. 
"Can I come in?"
"No...we are sleeping." 
He keeps fiddling with the door, finally retreating a few moments later to go down to eat his breakfast.  He's up early because he is going to church and his Pastor will pick him up at 9. 
Half-hour later he's back.  
"I just want to come in and say good-morning." 
So much for sleeping in.
More than wanting to say good morning to me, he wants to come in and play with/annoy the dog.  
He does actually wish me a Happy Mother's Day without prompting, and gives me a hug.  
He made a video for me that he wants me to watch right away. 
You see last year on Mothers Day he was supposed to make this video, but he decided he was just too tired.  In fact, he also decided that his handwriting was so bad, he couldn't even sign my card.  
So this was a huge step in the right direction.  Here's the video:



I must admit this made me smile from ear to ear.  

I have to also acknowledge my husband who really stepped up this year.  He doesn't cook, but he brought breakfast and dinner in.  He bought beautiful cards and flowers for both me and my mother.  He cleaned the kitchen (extremely rare) and did everything he could to keep the boys out of my hair for the day.  Of course, that was the greatest gift! 

Another awesome gift (that I believe was definitely God at work) --Red gave me the gift of leaving the house for most of the day! (I know that sounds bad huh?)  He went to church and then his Pastor dropped him off at his friends house where he spent most of the day.  This allowed Blue to have peace and therefore give me peace, so that I could nap and lounge for most of the day.  Hallelujah! Thank you Jesus! 

Oh...and the long lost son, Slim Shady showed up at the house, not 1 but 2 days in a row.  He actually hung out, ate dinner, watched a movie and the basketball game with his dad and his brothers.  He will be deployed soon to Afghanistan.  I appreciate that he is finally reaching out in his own way, trying to show that he does love his family. 

Blue did his best to hold it together for most of the day and for that I am grateful.  He opted out of doing homework together.  He knew that would probably push him over the edge.  Unfortunately, as soon as Red walked through the door, it wasn't long before the 2 of them were at each other's throats, which was the spark that lit the fuse and sent Blue over the edge and out of the house.  He walked over to our neighbor and friend's house where he cooled down.  

It really was the best Mother's Day I can remember in recent history.  Of course, there is always room for improvement.


While I was lounging in my room, browsing on my computer,  I received 2 comments from exasperated Aspergers moms from last year's Mother's Day post.  Here is one of them: 

"Another heartbreaking mothers day, I actually hate this day. On a whim I decided to look this up to see if it would help. I have talked to my daughter a ton of times today, not one happy mothers day, even when I reminded her, just her going on and on about some boy she is upset about...and by on and on, I mean on and on. This is an extension of a two hour conversation from last night. When I reminded her it was mothers day and she has not acknowledged it she said "I planned to later" When????? I know this sounds bad, but I feel I sacrifice so much for her, and this is the one day I was hoping for a little acknowledgment. HOw did I forget this is how most mothers days are. Now she is upset because how could i kick her when she is down....really????? Ok, another venting hope this helps me get thru the rest of the day."

To these 2 moms I say, there is always hope.  To all of you Aspergers Mom's who did not get the acknowledgement that you wanted, needed and deserved, please know that they do love you.  They show it the best way they can with what they are working with at the time.  Continue to let them know what you want and expect from them.  You may not get it right away, but you may be able to get it from them in the future.  Don't set your expectations too high.  It may not come packaged perfectly with the flowers and bow on top...but it is love none-the-less.  

I also want to acknowledge you here:

You are the best mom you can be
You are enough  
You are loved

"You are a cherished Blessing to the world and to me." -my friend, Elena de Beche 

Thursday, May 10, 2012

The Oxygen Mask Project



Today the The Oxygen Mask Project is republishing my post "Dear Diary".  I wrote the post originally for this blog, but I guess it strikes a cord in a lot of moms.  We all have those self-pity, self-loathing days where we think all of these negative thoughts about ourselves.   When we feel like we are just not enough or we don't even know who we are anymore.


Then we have to pick ourselves up...dust ourselves off and keep it moving, knowing that deep inside that we are doing the very best we can with what we have on any given day.  However, it is good to have a little self-reflection at times, because there is always room for a little self-improvement.  Please check out the "Dear Diary" over at The Oxygen Mask Project.


The Oxygen Mask Project also has a wonderful community on facebook.  Click HERE to check it out.


And if you haven't joined the Confessions facebook Community you are really missing out on an informative, supportive, good time!  See you there! 

Wednesday, May 9, 2012

Freaks, Geeks & Aspergers

Editorial Note: This was written by my 13 year-old son Blue.  He was inspired after reading, "Freaks, Geeks and Aspergers" by then 13 year-old Luke Jackson.  He put this article together...on his own and submitted it to his Language Arts teacher and to the Principal at his school.  The school principal allowed him to read it on the daily announcements.  When he came back to class, his peers gave him a standing ovation: 

Do people call you a "freak?" Do you feel different from others? It may be what others think, but you're not a freak.  You have a gift! Some people have autism and even more have ADHD, but this article focuses on Aspergers Syndrome (AS), which falls under the autism spectrum.  This is a very helpful article.

So what is Aspergers you ask? Well...some kids say it's bad, but it's not! It's defined as a disability but I think it's a gift. (I know, I just repeated) It's also known as High Functioning Autism (HFA).  People who have it have a few problems such as social skills, anxiety and more.  So they may not have a lot of friends. or don't have any friends.  But they are very smart too.  They usually have a special interest and know a lot about it; sometimes they can bore you to death when they talk about it a lot. Some people think that they're freaks because of the bad things.  We shouldn't judge their differences, we should help them, be a friend, support them and be kind.

Now there are other disabilities too.  They also need help.  Some AS peeps can't think about other people's feelings, they are stuck in their own closed world and even repeat themselves.  Don't pick on people who are different because you are too!

For those of you bullies who tease them, or think you're popular, you are wrong.  Popularity is not real. You are no better than them!  Remember, everyone is unique and should be themselves.  It makes me feel horrible when others criticize me for being myself.  You shouldn't have to be someone else to fit in.  You should be able to be yourself.  You chose who you want to be!

People with Asperger's Syndrome may help change the world if we put down our differences and accept each other. When they are adults, they will have worked on and learned how to handle their AS.  Having Aspergers to me, helps me focus on my interest and know a lot about it, like computers and cars.  I try to help others in lots of ways, especially kids with AS.  I even spoke twice at a teachers conference about AS so they could help their students with AS.  I am a compassionate person.

So now you have some information about autism, try to be a friend.  Remember AS peeps, you are not a freak! You are unique.  Others, please be considerate.

If you want to know more about teens with Aspergers, I'd recommend a very good book by a 13 year-old with Aspergers called, "Freaks, Geeks and Aspergers Syndrome."  There are other good books to educate youself.  I would recommend you read them, or just talk to me.  Try to understand people with autism and be patient.

Oh and it's cool to be different.  I hope that this article helped someone's life.  I really want to impact their lives in a good way.

"If we cannot end now our differences, at least we can help make the world safe for diversity." -John F. Kennedy.

While Blue was reading this announcement over the P.A. system, there was an ARD (Admissions, Review, Dismissal) meeting going on.  The parents were facing the option of having their child evaluated for autism and putting him in to the Social skills support system that the school has to offer.  After hearing Blue speak they said, "If you can do that for our son...sign us up!" 


Yep...he got his wish.  He changed at least one life.  I didn't give him the extraordinary math and science gene...but I think I gave him the gift of wanting to make the world a better place.  


I am one proud mama! 


If you are interested in reading the book, to Help Support The Blog you can purchase it here: 

Monday, May 7, 2012

He's Got the Blues

I've been wanting to write a post about medication changes and the blues it's giving Blue.  It's such a draining process and therefore draining subject to think about much less write about.  I've been going through this for so long...first with Red and now with Blue.  A sistah just can't seem to get catch a break.  Now that things have settled down a bit with Red...it's Blue's turn to fall apart.

A good part of this past year has been pretty challenging for Blue.  He's growing and going through lots of changes hormonally, which has had his anxiety and anger factor turned up to max volume.  He has gone from my easy child...to my problematic child as he approached the big 13.  He's inflexible, angry, incredulous, impatient and overwhelmed by all of his many, many thoughts.  His mind is spinning at 100 mph and the rest of us can hardly keep up.  He is making straight A's, however he seems totally spent when he comes home from school because of social issues.  He's so exhausted and drained mentally, yet he pushes himself and makes homework bigger than it has to be.  Most nights by bed-time he is a complete mess.

A little over a month ago we weaned him off of one med and started him on another.  I don't really want to get into specifics because as we all know, each med works differently for each individual child.  Let's just say it's in the SNRI class of drugs, which is supposed to treat depression and Generalized Anxiety Disorder.  We started minimally lets say with 20 mg.  When that didn't seem effective the docs decided to move him up to 40 and then 60 mg, which is the max for his height and weight.

Did it change things for the better? No.  He seemed to become not exactly anxious, but very aware of all of the things and people who really got on his nerves and he felt the need to let us all know about it...angrily.  We were up to at least one explosion a day...at least. So I'm thinking...this is not working right?

The Psychiatrist who always wants to add another med,  but I have to see her because he's making self-harm statements, and I can't get in to see anyone else anytime in the near future...says lets add this stimulant which should help loosing up his rigid thought and explosiveness.  I argue...I put it off...but eventually, out of desperation, I try it...praying that it will help.  NOT!!! I should have followed my instinct! It was like he was on speed.

He had already started this researching electronics obsessively...more obsessively than ever. The new Microsoft store opened up and he had to go to the Grand Opening.  He went and spent several hours and then asked to go back 2 days later.  The obsessions, questions and lists and lists of things to do, buy and research were over the top, to the point where he didn't feel like he had time for homework and showers because he had to do more research for things he can not possibly buy.  He became highly agitated whenever he did not get the response from us that he wanted or when we requested anything from him other than what he wanted to do.

So of course, back to the freaking drawing board.  We scratched the stimulant after about 8 days, which made him like a robot on crack.  A few days later we go into the Neurologist and tell him, hey.. the SNRI is not working either.  He says, let's pull him off of it...slowly.  He brings up the possibility of trying couple of nightmare meds that I've already been through with Red.  Then he brings up a relatively new one called Prystic.  I'm like...hell no!  I don't want to try something else new and put him through this freakin' trauma again!

Non of the SNRI's or SSRI's that we have tried have worked so far.  None of the non-stimulant meds did anything for him but make him sleepy.  The only thing that has ever worked is Abilify.  Then he started growing and going through these hormonal changes and it wasn't working anymore.  Instead of increasing it...the Psych started adding these anti-anxiety, antidepressant drugs.  I want him on as few drugs as possible.  So I tell the doc...here is what we're going to do:

  • Take him off of all of this crap except the Abilify. 
  • Increase Abilify it to the appropriate dose for his current height and weight. 
  • Supplement it with the best possible Omega 3's (and no not one prescribed so big pharma can make money)
  • A supplement combination of vitamin methyl B12, Hydroxy B12 and vitamin D 
  • Change our diet to high protein, vegetables and fruits and less processed food
  • An increase in exercise 
  • Psychotherapy individual and family with an autism with a certified BCBA (Board Certified Behavior Analyst)
So that's the plan.  Praying that it works and that he doesn't completely bite my head off in the process. 

Sunday, May 6, 2012

"Black Gold"



Despite the meltdowns early in the day, last night I had the pleasure of going to see Esperanza Spaulding...a 27-year-old,  prolific, unique, jazz artist. My husband insists on seeing her every time she's in town.  Last night, I was profoundly happy that he did.  The petite Esperanza slays a mean upright bass, bass guitar and uses her voice as an instrument.  
This song especially seeped into the depths of my soul and brought tears to my eyes as I thought of my own special boys.  I hope that they grow up knowing they are precious, "Black Gold".  In fact, I will make it my goal. 
Hold your head as high as you canHigh enough to see who you are, little manLife sometimes is cold and cruelBaby no one else will tell you so remember thatYou are Black Gold, Black GoldYou are Black GoldNow maybe no one else has ever told you soBut you're golden, babyBlack Gold with a diamond soulThink of all the strength you have in youFrom the blood you carry within youAncient men, powerful menBuilders of civilizationThey'll be folks hell-bent on putting you downDon't get burned'Cause not necessarily everyone will know your worthThink of all the strength you have in youFrom the blood you carry within youAncient men, powerful menBuilders of civilizationThink of all the strength you have in youPowerful, powerful menBuilders of civilizationHold your head as high as you canHigh enough to see who you are, little manLife sometimes is cold and cruelBaby no one else will tell you so remember thatYou are Black Gold, Black GoldYou are Black GoldThere'll be folks hell-bent on putting you downDon't get burnedNot necessarily everyone will know your worthThink of all the strength you have in youFrom the blood you carry within youAncient men, powerful menBuilders of civilizationThink of all the strength you have in youPowerful, powerful menBuilders of civilizationHold your head as high as you canHigh enough to see who you are, little manLife sometimes is cold and cruel[ From: http://www.metrolyrics.com/black-gold-lyrics-esperanza-spalding.html ]

Read more: ESPERANZA SPALDING - BLACK GOLD LYRICS http://www.metrolyrics.com/black-gold-lyrics-esperanza-spalding.html#ixzz1u6pgeMXp
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Ladies and Gentlemen here she is Ms. Esperanza Spaulding: