Sorry I've been MIA

So much to process, so little time.  Dealing with this family stuff has been hard but I have to say, the separation (only 1 call since Feb) has been healthy.   In fact, I feel (emotionally) healthier now than I ever have in my life.  In addition to losing the emotional baggage, I've lost weight too.  18.5 pounds and counting! 

In other news, we had Dylan's IEP meeting.  It went well.  We got everything we felt he needed to have a successful year.  I wish every parent had our experience.  We walked out of the meeting happy, feeling like Dylan was the most loved child in the school.   I wish we could clone our child study team (or at least their attitudes) and send it out to every school in the nation.

My best friend says it's me.  It's my attittude that causes us to have such a positive experience.  I don't know.  I find it hard to believe that all these parents who are struggling to get their child the basics are going in with a bad attitude or a "you owe us" attitude.    I don't know but I wish I could figure it out.

Deaf Autism Study at Boston University

Please share!  Thanks to Elise for posting this information!

A lighter post...

Literally :) 

I'm sick and tired of being over weight and generally unhealthy.  I was almost at my highest again, nothing was fitting.  A woman at the day care center that Dylan goes to for after school care recently lost 50lbs.  I cornered her one afternoon.  "What did you do?"  Hoping to hear about some new program that would magically melt off this excess weight.  She looked at me funny and said "nothing, just weigh and measuring my food did it".  ~thud~

I've done weight watchers for years and years.  I once lost about 45lbs with them and then, when the cost of us going got too high, went off and gained most of it back.  However, I know the golden rule.  Less calories in, more calories out equals weight loss.

So.... I made tree changes.  Instead of serving dinner family style, I plated our food in the kitchen.  I weigh and measure mine and my husband's protein and grain or starch and then give Dylan a nice size portion.  Veggies I still serve family style - you can have as many of those as you want (we typically demolish them).  I have also started to journal my food on sparkpeople.com.  I've also started to walk to the train in the mornings.  It's 1.85 miles on a 95 foot elevation.  I drive home from Marc's office.  He does the same thing in reverse - he drives in the morning and then takes the train home and walks from the station.

I have lost 14lbs in about 2 months.  ~insert happy dance~

However, the walk has become so much more to me than exercise.  I've never been very good at going deep into my head and dealing with all my compartmented emotions.  They've been there so long it's kinda hard to sort through and get to them so I gave up a long time ago.  I tried meditation, I tried Yin Yoga.  Nope, too cumbersome to get to those packages.  Maybe it's timing, maybe my compartments are exploding at the seems and just need to be let out but I'm finding I'm able to get through those compartments on my morning walk.  I'm gaining such clarity and such peace. 

When I've tried to deal with things in the past, the present always interfers.  Thoughts of what I need to be doing, thoughts of my day, my weekend, whatever, always seem to intrude.  Not so much on my morning stroll.  Some mornings I'm just blank.  No thoughts, no revelations, just the thumping music in my IPhone causing me to sometimes break out in song as I trudge along (thankfully it's 6:30 in the morning so no one to offend with my voice).  Sometimes, like today, I'm so engrossed in dealing with a compartment that I dont' realize that I've made it three quarters up the hill and I'm booking at top speed wheeeeeeeee. 

What a gift this has become.

I can see you

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"Galileo's Head Was On the Block... The Crime was Looking Up The Truth"

I love this song.  Always have.  It's been speaking to me lately.  Thinking about my "crime" of searching for my truth.   The bombshells of my daily life are definitely exploding.  Not always in a bad way but self-discovery is a messy thing and not for the faint of heart.  I have a session tonight with my therapist.  I was looking forward to it until today.  Now I'm anxious because I have to face my demons and continue to face them (unlike when I'm alone and can shove them back into their little corner in my brain).   So... while I battle, you enjoy.....
 
 

Why does seclusion and restraint seem to trigger me.. a/k/a my story

I went on a jag about seclusion and restraint - emailing the world, posting here, on facebook.  I was infuriated, driven by what I thought was my child's experience with restraint. 

Was that all there was to it?  Why was I so angry about this topic?  Why did I feel so compelled to stop it from happening in our schools?

I've been doing a ton of soul searching these days.  I've found a new therapist who I absolutely love.  She's just granola crunchy enough to appeal to that side of me but very down to earth and level headed.  She's guided me through some self hypnosis/medatation stuff which has seemed to opened my heart, mind and soul greatly to my past.

While the topic does get a lot of fuel from what happened to Dylan last summer, it also gets a lot of fuel from my past. 

***********WARNING - POSSIBLE TRIGGER ALERT**************

My friends from childhood would tell you... they were my friends from school.  No play friends.  I was contantly punished.  In my room for days on end coming out to use the bathroom or eat.  My books were my friends.  I'd sit on my desk with the window open whenever I could and read.  I'd watch my brothers play with their friends in the driveway and dream about the day I would be able to leave.  I know (or maybe rather hope) that I didn't spend as much time confined as I remember.  

I was allowed out to do my "chores" (which were often the reason I wasn't allow out and confined to my room).  I was responsible for cleaning up the living room, dining room and kitchen.  That was before school.  Then I'd have to come home from school and redo what I did in the morning because either I didn't do it right or my parents, brothers and sister would make a mess and then I'd have to clean up the bathroom and do the laundry.  I've heard that my father's family would call me Cinderella behind our backs.  They weren't too far off.  Crazy thing is, our house was always a mess (think horders).

Then my sister was born.  She got my room and I was in the basement.  No heat, no air conditioning.  Only good thing about that was I could sneak out and smoke.  My room was so cold in the winter, I'd have a glass of water next to my bed when I'd go to sleep and when I awoke the next morning, it had a layer of ice.  I had an electric blanket which was great except one day after a shower, I was so cold I jumped onto the bed which caused the bed frame to jump up, connect with the socket the blanket was plugged into causing a fire.  I pulled out the cord, getting enough of a shock for my hair to stand on end, blacken my hand and burn the shit out of me.

Don't get me wrong.  I did get out and wasn't locked in there always but enough to make an impact.  Enough for it to tell me I wasn't worthy.  I wasn't worthy of companionship.  I wasn't worthy of security.  I wasn't worthy of the love my brothers and sisters received.

Self worth... it's such a tricky thing isn't it?  It's the value you place on yourself yet that self  worth is based almost entirely on the way certain people in your life treat you.   Yes, we can grow beyond it and that is what I am hoping to do.   A good part of my self worth is based on the fact that I was abandoned by my birth mother and then had a mother who resented me, hit me, berated me, used me and generally just didn't like me and a father who sat on the sidelines watching this happen to me.

My husband likes to say I have W*nder Woman syndrome.  I pride myself on stopping when I see people in trouble like car accidents and such.  I've attributed it to the fact that no one "saved" me as a child so I need to save the world.   I realized yesterday that it also has to do with my self worth and wanting approval from those people in my life that I value. 

My Mom loves to say that my behavior is always attention seeking.  "Look at Me, Look at Me!" and she'd wave her hands in the air.  She's partially right.  I'm seeking attention not for the sake of attention but to gain her approval, her acceptance.  Something I've come to realize that I will never get.

I was thinking about a fight I had with her when we made the decision to adopt.  She was mad at me because I didn't consult her.  Paraphrasing.... I can't believe you didn't come to me with this!  If anyone knows what its like to take in a child that isn't yours, it's me!  I heard her and then shoved it deep down.  It resurfaces in my mind recently and I guess I finally understand what she was saying.  If she said what she really meant, I think it would have sounded more like.... don't adopt because you'll never love that child as your own.  Now, before anyone gets their panties in a twist, that is NOT how I feel about Dylan.  It's simply how I think my Mom thinks of me.

I guess you can only keep things bottled up for so long.  Everything is coming to a head these days and it's crazy.  The path of self discovery can be rough but interesting.  Most times I feel like I am observing from the side lines and then jump into the frey to feel what it's like and jump back out again when things get overwhelming.  I have a new therapist who is wonderful and really helping me through this process gently.  So forgive me if I just throw things up here as I process.  Some may make sense, others not so much.  I don't believe my family reads my blog but if they do, I hope they understand that this is MY process.  Eh, they aren't talking to me anyway so I doubt they read this.

They Like Me! They Really Like Me!

I was nominated for funniest blog post for my Sensory/Superhero post on the SPD Blogger Network.  Go and vote :)  Thank you!

Words no child should ever hear

"I regret parenting you".

It hurts, even if you are 44 years old.

Keep your special needs kids at home!

That basically what I was told on a message board (waves to the cammers if they are still coming over) when I had posted about the use of restraint and seclusion.  "If your kids can't behave - keep them at home!  I don't want them interfering with my child's education!".   One went on to tell me that a child with special needs was allowed to throw heavy objects around the classroom without any discipline or consequence.  That the child was there a good portion of the year and it had to be escalated to the principal to have the child removed.  My response was shame on you for not advocating for your child.  Advocating is not just something the special needs community needs to do (though we usually need to do it a hell of a lot more).

I tried to appeal to them by asking "what would you do if your child was locked into a room for hours, allowed to urinate or defecate on themselves?"  The response was essentially (paraphrasing here) that the kid would be in trouble for whatever caused them to be put into that room in in the first place.  ~insert jaw drop here~.  Now, I know kids can be bad. Hell, I was a handful myself.  But there is no reason for a child to be locked away for hours on end.  They just couldn't understand that. 

I was told that if anything, they would oppose this law because it ties the hands of the teachers.  ~sigh~  They obviously didn't read the act.  While there are some issues that teachers have pointed out to me (not allowed to restrain a child when trying to flee the premises), the idea is not to completely stop the use of restraint and seclusion but to prevent the abuse of these tools.

When I tried to explain that the difference between their child and my child being restrained and/or secluded was that their child had the ability to come home and tell the parents exactly what happened vs. my son (and many other special needs children) who couldn't articulate the experience, they didn't want to hear it.  Our kids are different because they can't defend themselves and can't tell.  That's what I thought until I read this story about the Los Angeles teacher who tied up his 3rd grade students, taped their eyes and mouths shut, put giant cockroaches on their faces and fed them semen.  As far as I can tell, these are neurotypical children.  These children didn't tell.  The only reason he was found out is because he was photographing it and having it developed.  The clerk at the store reporting the photos to the police (bless him!).  They set up surveillance in the classroom and he was caught.

These issues are not special needs vs. neurotypical.  We all need to take notice.  We need to do everything we can to protect our kids. 

ACTION ALERT on Restraint and Seclusion*

PLEASE EMAIL YOUR UNITED STATES SENATORS AND ASK THEM TO COSPONSOR THE KEEPING ALL STUDENTS SAFE ACT (S.2020). This bill will protect children with disabilities nationwide from restraint, seclusion and aversive practices used in the public school system.


The need for this legislation is exemplified yet again in a horrific a situation regarding the use of school seclusion rooms, this time in Middletown, CT – See one of many stories on this situation here http://www.wfsb.com/story/16490795/middletown

How to Contact your U.S. Senator http://www.senate.gov/general/contact_information/senators_cfm.cfm

*reposted with permission

Another child, another injury from restraint

Please sign this Petition to support the end of restraint and seclusion in Florida schools. 

We will tackle this state by state if we have to but this needs to end.  I will warn you... the video posted is graphic and heartbreaking.  My heart goes out to this mother!

"Scream Room"?? Sounds more like torture room to me.

A school in Connecticut is under fire for having and using what they refer to as a "Scream Room".   They are used when a teacher has lost control of a child's behavior and is used as a seclusion room.  They are supposed to be padded for the child's protection.  This room is not. 

Scream room: child abuse or good idea?: wtnh.com

Children as young as 5 are allegedly subjected to this room on a regular basis.  Their screams heard by the other children.   There are claims that the teachers will hold the door closed on the child to keep them inside.  How the hell do these people sleep at night????

I read the comments at the bottom of the article and I wish I could say I'm surprised.  I'd love to take out a full page ad in USA today or some other national magazine or newspaper to let the world know that most parents of special needs kids do parent and discipline our children!  We do NOT expects the schools to raise our children for us.  That often times children are being overly disciplined for either (a) typical, age appropriate behaviors or (b) for behaviors that are caused by neurological responses to their environment. 
Would you expert a child who had a seizure to be disciplined for their behavior?  If not, then why should a child who is verbally or physically stimming (hooting, yelling, humming, spinning, rolling on the floor) be punished? 

My son is a major stim monkey.  His OT once told me if she could hook up an IV of stimulation to him....  Anyway, one of his stim behaviors last year was, at the end of the day, when he was tired and overstimulated, he'd lay on the tile floor and push his face onto the tile.  If this was happening in the classroom, it would have not been a big deal.  However, he tended to do this during dismissal in the middle of the hallway when students are trying to get to their buses.  He posed a hazard to himself and those children.  His teachers didnt' restrain him or seclude him for a behavior that he really couldn't control.  They did what they had to do to keep him safe until we were able to come up with a solution to the challenge.  We found that if he was given sensory stimulation prior to dismissal, it would hold him long enough to get him and his classmates on their buses safely.

I'd love to see action plans for every student - not just special needs.  I'd love to see all teachers setting their students up for success.  As Dylan's teacher, Miss Joan, says over and over again... "If you set children up for success, they will succeed.  If you set them up for failure, they will fail". 

Scream rooms or restraint and seclusion rooms that are used at the drop of a hat is a great way to set up students for failure.  These techniques should be used as a last resort, when an escalation plan has been put into place but does not prevent a child from going into melt down.  Children should not be left alone in a locked room, frightened to the point of harming themselves.  They should be monitored as closely as possible.  These rooms should have cameras to prevent the abuse of students AND school staff.

People, this isn't rocket science.

Keeping All Student Safe Act - An Open Letter

Over the years, I have learned about the use of restraint and seclusion being used as a disciplinary tool in our schools. For some children, it has meant severe mental anguish after being locked in a closet during school hours or, in a recent case, forced into a duffel bag, zipped into it until his mother could get to the school and free him. For other children, the use of restraint has resulted in injuries from being duct taped or tied into chairs. Some schools have specially made restraint chairs! The use of restraint has led to some children's death.


While these disciplinary actions happens across the board with all children, it is an area of extreme concern in the special needs community. Children, young adults and adults within special needs community can easily victimized by teachers, aids and may not be able to communicate what is happening to their parents and/or caregivers.

My son Dylan, unfortunately, experienced being restrained this summer. He has a one-on-one advocate (she's worked with him for the past two years, is the parent of a special needs child herself, handles Dylan wonderfully and he adores her). He was angry at her because she wasn't letting him have his way. He was flapping his arms, telling her he was mad at her and he was going to walk away. Now, this is typical of Dylan when he gets angry and we have all worked hard to teach him that sometimes you just need to take yourself out of a frustrating situation and regroup. His Advocate knew this, was comfortable with this and had numerous situations where he responded this way and they worked through things in about 5-10 minutes. However, this particular day she was being shadowed by her supervisor who decided that my 3'11" tall, 47 pound son posed a physical threat to his advocate and physically restrained him, bruising his wrists in the process. I was furious. We had no legal recourse against this woman. There are no laws currently to protect our children. As I type this, she's teaching pre-school for special needs children. While we didn't expect her to lose her regular job, there is no database to track this behavior. We were lucky - the bruise and the memory faded quickly for him... but not for me.

Restraint can be necessary. It's important that the teachers and other caregivers have the means to protect the students, themselves and anyone else who may be in the middle of a situation. However, people have gone overboard. People have needlessly died.

US Senator Tom Harkin (D-IA) who crafted the American With Disabilities Act, has introduced the S. 2020: Keeping All Students Safe Act. For a fantastic outline of what this Act will hopefully achieve, please see a post by Jessica Butler who is the Congressional Affairs Coordinator for the National Autism Committee at OUR Journey Through Autism.

Please, if you have taken the time to read this, please take a few extra minutes and read the legislation and support it. Email Jessica at jessica@jnba.net to share your support. If you have a story to share about seclusion and/or restraint, she'd love to hear them. If you don't, your support is enough. Contact your local senators and let them know that you want their support on this important piece of legislation.



Thank you for your time!

Too Important Not To Share!

How do you feel about the use of seclusion and restraint in your child's schools?  Were you aware that your child's teacher and physically restrain your child, lock them in a closet or other room and face no legal action? 

This summer, Dylan was injured (slightly) when someone unnecessarily restrained him.  We had no legal recourse against her.  Keeping All Students Safe Act, S.2020 will change that!

Please see this post over at OUR Journey Thru Autism and let Jessica know your thoughts on the matter.  Even if you don't have a story to share, if you support this bill (how could you not?), please email Jessica and spread the word!