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!

Is that you?

Every so often, I see a hit from Australia.  Is that you Kim?  If so, come out, say hi, leave your email so I can say hi back :)

My favorite Christmas Song Evah!

Note from the teacher....

I got an email from Dylan's tutor today.

"When I went into gaga to pick him up, Natalie told me that they kissed on the lips. She told me they are getting married. I told them that they can't get married until they are 18 and they can't kiss. I told Dylan he could only kiss family members.



Thought you might want to know."
 
Oh boy.  And so it begins!

That's My Boy! He's Really Gets It!

Yesterday, we were running errands and it was clear that Dylan was just about at the end of his rope.  Instead of pushing the issue, I told Marc that I'd drop him and Dylan at the park and I'd go do the grocery/veggie shopping and pick them up after.  I ran to the produce store and the grocery store and called him to let him know I was on my way.

They got into the car and Marc looked like he was ready to kill someone.  A boy at the playground had a set of binoculars.  Dylan, who loves binoculars, telescopes and the like, asked to play with them.  The boy not only didn't let him play with them but taunted him with them.  As if that weren't bad enough, the little jerk then proceeded to try to turn the other children in the playground against Dylan.  The boy's older brother did his best to intervene but the kid's father just sat there on the bench like an ineffective asshole.  He did eventually take away the binoculars but never corrected the child's behavior.

I'm so proud of the two of them.  First, my husband for not punching the father in the throat and not telling Dylan to drop kick this guy's offspring into tomorrow.  Secondly for Dylan holding it together and not getting upset.  Sorry you little fucker, you didn't get the best of my boy.

Later, after the groceries were put away, Marc and Dylan went out to tackle what was left of the leaves.  We have a decent sized pile in front of the house.  I glanced out the window to see Dylan with two little girls from across the street.  It was the first time he's had a chance to play with them (I believe they are only with their Dad part time).  I watched as he showed them his new toy (that he earned for good behavior - this claw grabbing kinda thing).  He picked up some leaves with it and threw them into the air.  The girls laughed under the shower of leaves.  He then turned to the younger girl, taking a moment to show her how it works, and then gave it to her.  I'm not even sure if she asked to play with it, he just handed it over.  He let her play with it for some time and then he took it from her and gave it to her big sister.  I went out, introduced myself to the girls and then told Dylan I liked the way he was playing and went back inside knowing there would be no cries of "he's not sharing" or "she's being mean".  Just three kids playing nicely in the leaves.

When they finally came in I just gave him a big hug.  He smelled like leaves.

It was scary....

Last week, Dylan's tutor sent us a video of Dylan working.  She always does this for the parents of the children she works with to show us all the magical things our children are learning.  On Tuesday, she worked with him and show the video and he did this weird head/eye roll thing.  I chalked it up to his being silly.

Then, after his work with his tutor, he went to go play.  His day care has this two story play area (think a McDonald's type playland only mesh).  He proceeded to have an epic, earth shattering meltdown.  He latched onto a pole and had to be pried off (all the while hysterical crying).  He then laid down and refused to move.  Just crying for Mommy and not saying what had happened.  I got there about 15 minutes into it and had to crawl into the structure to get him.  Ordinarily, he would have acknowledged me but he didn't.  I pulled him onto my chest and he was dead weight.  Just crying and mumbling.  After another 15 minutes or so, he was calm and we climbed down.  We went home, had dinner and I put him to bed.  I sat in our living room and my brain went into overdrive.  Something was off with him.  His energy was off.  He wasn't acting like himself.  I spoke with the tutor and she agreed, something wasn't right.  We called the doctor.  The next morning we went to the pediatrician (new one who we adore).  He thought it may have been a seizure so now we have to get into see the neurologist.  The one he reommended wasn't available till January 25th.  The one we saw years ago at the children's hospital wasn't available either but his nurse had him call us.  I showed him the video.  It wasn't a seizure - more than likely some self-stim behavior.

What happened in the play area?  Well, that could have been a seizure of some sort but "we don't chase one seizure".  He said that it's not like we can put him on meds for seizures without proof that he had a seizure.   When he had his seizures as a baby, his EEG was normal.   So chances are, if he's following the same pattern, he'll have a normal EEG and medication wouldn't be warranted.  Plus, if it's one seizure, how do measure if the medication is working.  Dylan's seizures as a baby were uncontrolled.  5 tonic clonic seizures in a day.  That's why they put him on medication.

Hopefully, this was just a scare and nothing more.  Good news is that he can start his new ADHD medication.  The first one ended up giving him stomach aches, aggression and he was picking his fingers raw.  Hopefully this one will do the same for his attention without the side effects.

What a difference almost a year makes!

About a year ago, Dylan won a box of figits from the lovely http://www.ourjourneythruautism.com/.  I had used this as a teaching moment and Dylan wrote her a thank you note....

Recently, Dylan rode in a fund raiser for his stable.  I asked him to write a thank you note and this is what he did....

It's amazing what time and hard work will do.

School

Dylan has really been enjoying school this year.  The medication has improved his attention span which is allowing him to learn at a much greater pace.  He's starting to read (he currently loves to point out the word "the") and it's just such an exciting time for us all.  His teacher uses this great website called Star Fall.  He enjoys it so much that he'd rather work on his reading than watch TV (Score!). 

He really needed a dedicated workstation in the house.  We had one set up from last year but he really has outgrown it.  We have a recliner in our living room which we never use (other than to dump our coats on) so we moved that into the attic and went to Ikea and picked up a small desk for $20.  We got him a chair (that swivels so if vestibular stimulation is needed, we can just spin him around in the chair - wheeeeee) and a little foot rest.  The desk is perfect because it has a gully on the back that holds a pencil holder and other small items which allows his work space to be free of distractions.  We did need to put a small desk lamp on there because the lighting in our living room stinks.  He does mess with that a bit so we may have to find an alternative.

The other day, he wanted to work on his letters on Star Fall so I put the laptop on his desk and he just worked away.  He's gotten so good at the computer it just blows my mind.  In his classroom, they have a huge smart board that they use for Star Fall (among other things).  It's funny when Dylan forgets and tries to use the screen on the laptop as a touch screen.

Friday we saw our developmental pediatrician.  He was thrilled at how well Dylan is doing on his medication and was very pleasantly surprised that there have been no side effects.  He's eating and sleeping well and has exhibited no tics. 

Monday I took a half day and went to his Halloween parade and volunteered in the classroom for the party.  Fifteen minutes before the parade was to begin, we started to get the kids ready.  Each child was taken to the bathroom and then brought back into the room to get dressed in their costume.  About 5 minutes before the parade was to begin the fire alarm went off.   We lined up the kids and led them outside (our poor sensory seeker with their hands over their ears did great).   They lined up in their designated spot, the teacher did a confirming head count and asked the children to sit on the ground, cross legged as "model students" (when she asks them to do this, they know to be quite and place their hands in their laps).  They waited.  From time to time, we got whiffs of smoke.  Turns out someone put a box on top of an oven which was on.  It was a small fire that the staff took care of but required the fire department to come out anyway. 

After a while, the older kids got restless, stood up, started taking photos of each other, laughing and horsing around.  Their teachers tried to get them to sit back down and be quiet but it was like hurding cats.  This whole time, Dylan and his classmates just sat on the ground, looking around quietly with their hands in their laps.  I said to his teacher "you must be ready to burst!"  She asked me why and I pointed at the class and said "look at how good they are being, all the older kids are misbehaving but here they are, our model students, this is all you and your staff's hard work.  You must be so proud!"  She was and make sure the kids knew it. 

We had our parade and went back into the school and had our party.  His teacher picked up dye free cupcakes at Whole Paycheck (LOL) and we had chips and fresh fruit and juice.  It was lovely.  We left and went home and relaxed for a bit and then went out trick-or-treating.  We ran into our neighbor and hung out with her and her two kids.  It was fun.  She pulled along a wagon complete with a cooler full of beer.  Kids got their treats and we got ours ;)

Unexpected Effects of Therapeutic Riding (Hippotherapy)

When we were told that Dylan has low muscle tone, I did some research.  I wanted to do something fun with him that would help the tone and that's when I discovered therapeutic riding.  I went to the Professional Associates of Therapeutic Horsemanship International and found what was to be our new home.

The first time we went out, the owner K, introduced Dylan to her miniature pony. This is a good way for her to see how a child reacts to the animal and whether or not they would be a good candidate for therapeutic riding.  She immediately showed me that helicoptering was NOT welcome in her stable and I really had to reign (pun intended) myself in.  Dylan's love of animals overtook his shyness and he started riding a few weeks later.

He showed himself early on to be quite the horseman.  He progressed from a beginner horse, to the next level to the youngest and feistiest of the horses.  We've been told on several occassions that he has a "natural seat".  Meaning that he is a nature rider which is interesting since one of his birth names means "Cowboy". 

He loves to ride.  He loves his horse B.  Even though the work makes him sore sometimes, he just loves it.  He has struggled to maintain his attention while on the horse but since we've introduced the medications, it's made a world of difference.  The owner, K, has done Dylan's therapy the past few weeks while his therapist was on vacation.  She was blown away by the change in his attention span the medications made.

This weekend was a fund raiser for the stable.  Dylan (with our help) raised $150 for the stable and $100 in an ad sale.  He understands that the money will help feed "his" horse and keep him warm in the winter.  At the fund raiser - all the children riders and groomers (they have a grooming program for people who can't ride) demonstrated their abilities.  Dylan rode through 10 stations and was at the top of his game.  I was so proud I thought I'd burst.  Then, at the end of the ride, they annouced that Dylan was working hard with his horse, B, and that he's working on improving his attention.  Then they gave him a trophy, a ribbon and a certificate.

Oh wow.  A trophy.  If he could have slept with it, he would!  He held it all the way home telling us "I love my trophy!".  We reminded him that he got the trophy because he earned it.  He worked so very hard and we are very proud of him and his accomplishments.  I'm surprised we didn't get pulled over from the light that must have been coming out of our car windows from him beaming!  More important than his basking in the approval of his parents, he was basking in self approval.  He was proud of himself.  More than I've ever seen before.  In addition to improving his gross and fine motor skills, improving his tone, he discovered accomplishment.  He discovered pride and self worth.  He discovered the rewards of a job well done. 

Congrats to my little equestrian!

I'm Such A Slacker!

My dear friend Karen over at Solodialogue just reminded me that I haven't updated on Dylan since we put him on meds.  All I can say is... wow.  It's like the world has been on fast forward for him and giving him this medication put it on pause.  He is noticing things in his environment like he's never seen them before, yet they were there since he was a baby.  The content of his speech has been off the hook.  He wants us to know what he's seeing and what he thinks about it.  Not bad for a kid with a severe speech delay huh? 

Initial reports from school have been incredible.  He went from last year only having a good day occassionally to have great days and good days daily.  His teacher is thrilled and thinks he'll be reading by December! 

I've been told that we are terrible parents because we are drugging our kid.  Fuck them. 

Better Living Through Chemistry

Well, Dylan's been on the meds for almost 2 weeks now.  After having a knock down, drag out battle with the insurance company and then his pediatrician (in which she called me up at 8:00 in the morning screaming at me), I got his meds covered.

It's been an interesting process.  It's almost like the world has been on fast forward and by giving him this medication, we hit the pause button.  He's seeing things in a new way and he's letting us know too.  While the quality of his speech hasn't changed that much, the content has changed dramatically.  He's instigating conversation so much more now, telling us about what he's noticing and what he's doing.  He's received two certificates for good behavior (we've never had one before) and even the school nurse asked me if he was on meds.   It definitely feels like we made the right decision.

Do Superheroes Have Sensory Processing Disorder??

A post on the SPD Blogger Website got me to thinking.  I’ve always considered Dylan a superhero.  Since he was a baby, I’ve said that his smile will change the world (one of his many super powers).    On Beth’s post, I shared with her the one time I saw a child in sensory gear I told him he looked like a superhero which got me to thinking…..

Do superheroes have Sensory Processing Disorder????

Let’s explore shall we??

Spiderman wears a skin tight costume (compression garment) from head to toe. He flings himself off buildings, swinging back and forth through the air (vestibular stimulation).  He wears his costume under his clothes and rips them off at the first sign of danger or a human in need (tactile defensiveness - tags and seams probably drive him nuts)

Superman also wears the skin tight costume (compression) and flies (vestibular) through the air with the greatest of ease. Now think about it – who other than someone with SPD would be remotely comfortable with flying without a plane or helicopter?
WAIT – THERE’S MORE!

I think we can all agree that the majority of superheroes wear compression type costumes which give sensory input.

Batman also has a utility belt and based on the number of gadgets (fidgets anyone?) I’d say that would be a weighted belt (sensory input).

Daredevil is blind but uses all his other senses to fight crime (just more support to my special needs = super powers theory).

Flash, Wonder Woman, Punisher, Storm, Thor, all wear compression suits, use heavy objects, seek vestibular input and, in some cases, in their alter egos, have proprioproceptive issues (hello clumsy Clark Kent!)


So the next time you see a child, teen or even adult wearing compression clothing, weighted garments or other “unusual” item, please don’t stare, don’t point fingers, don’t make faces. Please DO engage us and (if the parent seems receptive) or kids. Ask them what their super powers are! Chances are you’ll be able to figure it out on your own. Dylan’s smile and laugh, his ability to see good in everyone, his uncanny ability to make himself known in a very short period of time, those are his super powers. What are yours?

Starting meds

This weekend we are going to try meds on Dylan at the recommendation of the researchers in Boston.  We are excited and terrified.  We (Marc, myself and Dylan's developmental pediatrician) have put a great deal of thought and research into the medication.  We needed something dye free (very hard to do), his doctor felt going the stimulant route was best and we all wanted something that was single dose.  We also had to be conscious of the fact that Dylan has had seizures in the past so couldn't do something that may lower his seizure threshold (some drugs that are used off label for ADHD can lower the seizure threshold like W3llbutrin). 

Tomorrow morning, after giving him a good hearty breakfast, we will open up a capsule of Metadate, sprinkle it in some pudding, give it to Dylan and wait and pray.  I"m excited at the possibility of him being able to focus on something - anything.  I'm terrified that it would trigger a seizure (though very unlikely, I'm still worried) and I'm even more terrified that it will take away his amazing personality.  That's one side effect we are not willing to live with.  Tics are another possibility but even though they can be unnerving, they will go away as the drug leaves his body.

We saw his behavioral therapist who basically told us that he hasn't seen much good done by the drug class we're trying and that stimulants are not a good idea for him.  So, essentially, he's going against some of the top researchers and a doctor at the #1 children's hospital in the world (strike 1).  He also suggested that Dylan would benefit more from a mood stabalizer like... w3llbutrin (strike 2).  When I pointed out that wasn't an option he mentioned drugs like depakote (strike 3).  WTF!  Of course, I didn't sleep because now I was worried that we weren't doing this the right way.  I called the developmental doc who basically said that he was way off base which is what our instincts were telling us.  I'm thinking we may have outgrown our behavioral doc.  He's helped us a great deal but our parenting has improved and we really can't afford to keep going to him ($160 an hour!).  As my best friend pointed out, he has a vested interest in the drugs NOT working.  We are going to play this one by ear. 

Adventures in Genetics

Last week we went to Boston to participate in the Simons VIP Research program which is investigating the 16p11.2 deletion/duplication.  Dylan has the deletion.

We left Wednesday after work, picked up Dylan and headed to the airport.  Strangely enough, we flew through security (that never happens), got some dinner and waited for our flight.  Our paperwork said Gate 6 but at about 15 minutes to take off, no one was at our gate.  Marc double checked and yep, the gate had changed.  We arrived just moments before they called our section.   Dylan loved it!  He is such a good traveler and flyer.  He just looked out the window and once we were airborne, played with his video game.  I love flying to Boston because you go up, level off, hang out for a few minutes and start your descent. 

A driver picked us up and took us to the Sheraton where all the participants stay.  We unpacked and jumped into bed and passed out.  Next morning we got up early, found a place to eat and then took a taxi to the offices. 

We spent a little time meeting everyone, going over the legal stuff and then we were off and running!  I was in one room, being interviewed and video taped.  Marc was in another room with a bunch of different questions and Dylan was in another room doing the ADOS Testing (autism testing) and other cognitive testing.  His room had a one way mirror so during our interviews we could watch him.  A few times I really wanted  to go into the room and tell him to stop doing "x" but that's what they needed to see so I just kept doing my part.  Oh, my part was a list of questions to help determine if he falls on the autism spectrum.  Marc's questions were more general and family related.

We broke for lunch and came back to finish up the testing and questioning.

After, we headed back to the hotel.  We went swimming in a salt water pool which was SOOOO cool.  It's so nice not to smell like chlorine after swimming.  Then we went to dinner at a nice little Italian place.  It was an outdoor cafe and the birds were crazy aggressive which actually was a good thing because it entertained Dylan.  Then back to the hotel where Dylan and I passed out and Marc went down to the lobby to read.

Next day, we went to Boston Children's Hospital where we had breakfast (they have a nice cafeteria) and they took 4 (yes 4) vials of blood.  Dylan didn't so much as flinch.  He's such a freaking rock star!  Then we headed back to the office for a bit to discuss their findings* and then we headed to another hospital location for Dylan's MRI.  They had a mock MRI for him to play with which was good.  We called it a rocket ship and he got to play in it, on it, around it.  Then we went up to do the real thing.  It was scary but he did it.  He hated every minute of it and said so.  I don't blame him, I hate them too but when it was all said and done, they were able to do 1 series which is what they needed.  That was it.  We were done.  We headed back to the hotel where we wandered around, let Dylan buy a toy and then met up with our friends Andy & Lori for dinner.  After dinner went back to the hotel, got our driver, went to the airport and hopped our flight home.  After we took off, Dylan wrapped his arms around my arm and put his head down and went to sleep.  My arm is still sore :) 

*Findings...  Nothing new or earth shattering.  However, we have a new understanding of things.  The researcher who delivered the results has written papers on holistic medicine and children (she's pro).  She also explained that she rarely gives out an ADHD diagnosis because she feels it's over diagnosed.  However... Dylan is extremely ADHD and needs meds.  We have an appointment at the end of September to discuss medicine with his physician.  She also said he has movement disorder (flapping), sensory processing delay, the auditory processing stuff may or may not be caused by the ADHD- we'll be able to know more after he starts meds.

And in a case of right time, right place... she's an adoptee... in reunion!  I told her that we were considering reaching out to Dylan's first mother to share these findings.  She said that she is pretty confident that Dylan's deletion is pro novo (just one of those things that happen during development vs. hereditary).  She also put it this way.... he's already struggling to understand the world around him.  Bringing the first mother into the picture now may not be the right thing for Dylan.  We should wait until he is able to really understand adoption, first mother, etc.  So, after much discussions, we are going to wait.  However, we may reach out to the attorney in Guatemala so that she can let her know.  We're not sure about it just yet.  Stay tuned ;)

Common Sense is Anything But Common

Tuesday we discovered that Dylan's advocate's boss physically restrained Dylan which resulted in a finger like bruise to his wrist.

The story went like this... Dylan's advocate's boss (let's call her S) was shadowing Dylan and his advocate that day.  Dylan was in last period at camp.  It was gymnastics, something he struggles with greatly because it requires waiting his turn and that's pretty hard on any 6 year old, especially at the end of the day.  They were doing an obstacle course and Dylan wanted to go over an archway that he was supposed to crawl under.  His advocate corrected his behavior a few times till she finally decided to remove him from the area.  He was getting angry and started to yell at her "I mad at you, you not my friend" and, according to S, pushed the advocate (who's 4x his size and wasn't concerned about the push).

Before the advocate had a chance to act, S swooped in behind Dylan, grabbed his wrists and pulled them across his body in, for lack of a better explanation, a straight jacket hold.  Dylan began to cry that she was hurting him.  Now, my sensory seeking child does not experience pain like the average child.  It take a lot for him to be hurt and for him to say something was hurting and he was crying is a really big deal.  The entire bunk knew this - from the advocate to the counselors, even the kids knew this was bad.  The advocate told her to leave him be and she was told to be quiet and observe as "this is how we restain a child when they are escallating".   Dylan, my dear sweet child, who never feels pain (at least not like most kids) was crying to be let go.  "You're hurting me!"  His advocate implored the woman to let him go and she told her to back off.  After she released him, she demonstrated to the advocate on the senior counselor how to hold him.  She told her there was no way in hell she'd do that to him and that if he needs to be held, she hugs him and that's it.  He cried uncontrollable for a long time.  The counselors, the advocate and kids were shocked.  No one had seen him cry at all this summer. 

When I called his advocate, she was hysterical crying.  Her heart was broken.  She felt terrible that she didn't protect him.  She felt bad that she allowed this so-called case worker to hurt my boy.  I don't blame her.  Not at all.  She loves Dylan like he is her own. 

I spoke with just about everyone that matters.  I saw the camp director that night and told her what happened.  I called S's boss and talked to her.  I called a friend who's an attorney who specializes in special needs.

Ultimately, she was reprimanded.  A policy on use of restrain will be drawn up and it will no longer be left to an indivdual's interpretation or the hope that someone with this power would use common sense.  Parents of children effected will be notified that their staff have been trained in restraint and share the policy with the families.  I've received apologies from anyone and everyone (and so has Dylan).

There are no laws to protect children from unlawful restraint in my state.  This needs to change.  Yesterday I saw a tweet - a child had died from an overzealous caregiver restraining him in NJ.  This young man was restrained by a supervisor who did “not follow protocol nor use proper techniques while to trying to restrain”.  It scares me that the woman who restrained Dylan also did not follow protocol or use proper technqiues when restraining him.  The difference here is that this young man needed to be restrained... Dylan did not.

S teaches at a special needs preschool.  I'm really struggling if I should contact the people I know there and let them know what happened.  I don't want her to lose her job.  However I do want people to know that she could possibly do this again, to a small pre-schooler who may possibly be non-verbal.

I've heard through the grapevine that she had done this to other kids but they were non-vebal and their advocates didn't have the relationship with the families that mine has with us.  So internet... what do I do??

So Shines A Good Deed In A Weary World*

Several months ago, I entered a contest for Dylan to win a box of figets.  He won and we got a box full of cool stuff like stress balls, a wall walker (kinda like a sticky octopus that you toss on the wall and it crawls down), smiley face stick figure, this cool ball made of a hard rubber that Dylan loves to chew on and some other neat stuff.  We had been working on his writing and I figured this would be a good time to get him started on thank you notes.   Never in a million years would I have thought it would have such an effect on this lovely blogger. 

Then, being the proud Mama I am, I shared this with several people including those people who's efforts made it possible for Dylan to write the note.  His kindergarten teacher being one of them.  She wrote me back that she had a rough year.  She loves the kids but she was actually considering getting out of education but my email reminded her of why she does the work she does. 

Sometimes I forget that it's the little things that make the difference.  Now I have to get my ass in gear and sit down with him and write thank you notes for his birthday gifts.  Oy!

*Name that movie!

"What Did You Do To Him???"

Those were the words spoken to me on Dylan's second day of camp.  They were spoken by one of the camp counselors at after care.  She has been going on and on about how much his behavior has improved, how well he listens, doesn't run off, how verbal he's become (and understandable).  What did we do?!?!

By the way - our first conversation, she realized that by saying how wonderful he's doing and how much he's improved, that he was a bit of a challenge (to put it mildly) he was last year and tried a bit to back peddle.  It was okay, we've noticed lately too how much he's grown.  Not just physically but emotionally and behaviorally. 

Let's be honest - it's a year.  The year between 5 and 6 is HUGE.  Lots of room for growth and maturation in even a neurotypical child.  But let's also consider how hard Dylan has worked this past year....

He's received...

Speech at school 3x a week.  2 one-on-one and 1 small group half hour sessions plus the speech work the therapist does with the entire classroom.

Private speech - 30 minutes on Saturday.

OT at school 3x a week (sometimes more depending on need).  2 one-on-one and 1 small group half hour sessions plus additional work in the clasroom.  He needs so much OT that he'll even brush himself when he feels the need (self care has been a huge leap this year).

Behavioral therapy every other week not just for him but for us as a family.

Hippotherapy (a/k/a therapeutic riding) 1x a week for 30 minutes.  He loves this!  It's OT, PT and speech all rolled into one with some behavioral thrown in (when he is misbehaving a quick "what would Biscuit think!" usually snaps him back into reality).

Lego Learners 1x a week.  Social skills program which works on fine and gross motor.

Educational tutoring 2-3x a week. 

Now that I've written all that out, I realize that I would be more surprised if he hadn't blossemed over the past year.  He has worked his adorable little tush off.  We are so very proud of him. 

Now he's enjoying camp.  He spends his day with friends, swimming at least 2x a day, playing Gaga, soccer, hockey, basketball, doing arts & crafts, cooking, sledding (man made hill, they run water down it and the kids fly down on inner tubes), biking, nature, boating on the lake.  OMG I wanna go to camp in the worse way!