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!

6 years ago today

A brave woman in Guatemala labored to bring an amazing boy into the world.  6 pounds 10 ounces of smiles and love.  2 days later, that child was no longer with his mother but rather a foster mother who would love and care for him for the next five months.  Five months later, he was placed into our arms with the understanding and trust that we would love him and care for him with every fiber of our beings.  For the 6 past 6 years, Dylan's first mother has never been far from my thoughts but they always come to the forefront during certain times.  This is one of them.   I hope my son's Mother is at peace and has happiness in her life.  I pray that she feels this was the right decision for them both.

In August we go to Boston for a study on his genetic deletion.  We will probably attempt to reach out to Dylan's first Mom after to share information and hopefully start a relationship.  At the very least, I want her to know that her son is loved, honored and respected and so is she.

Dylan woke up this morning and announced "I am 6!"  He had chicken nuggets for breakfast and then off to camp he went with a bag full of TastyKake treats for his bunk mates and counselors.  Tonight we are off to a special birthday dinner. 

Happy Birthday my sweet boy!

Special Needs = Friendless??

Thankfully, not in our world. 

Dylan goes to an aftercare program at a facility that has a wonderful special needs program.  It ranges from children to adults and has everything from Passover Sedars, to drumming programs, to camp advocates and everything in between.  It also prides itself on the fact that "special needs kids don't feel special here".  Meaning, they are treated like everyone else and every effort is made for inclusion. 

This type of community, one that embraces and works hard at inclusion has an interesting effect on the NT children and adults who spend time there. 

When Dylan was in his school run after care program, it was a nightmare.  The adults didn't facilitate play with the children and Dylan was routinely left out or exluded by the other children.  The result was him acting out and being asked to leave the program.

We moved him into the program he is out now and, we've had some issues with Dylan's impulse control issues, it's been a wonderful experience. 

Today, my best friend volunteered to pick him up at school and drop him off for me.  She called me after she dropped him at aftercare and told me that she hopes when her son is older, the "same thing will happen to him".  I asked her what she was talking about and she said "Dylan walked into the room and all the kids started yelling "Dylan, play with me!  Be on my team!"  ~insert tears of joy~  We've worried, because of his experience at the school program, that he wasn't included.  I'm happy to say those worries were unfounded.

Awesome Give Away

I love the SPDBN website.  It has many bloggers facing challenges I face every day.  They also have killer give aways.  They just put up a new one where you can win $250 in sensory friendly products!  Woo Hoo!  I'd love that for my Dylan!   So go check it out SPDBN's website to win it for yourself!

While you're there, check out the posts too - there are some amazing writers over there :)

Adoption is a happy thing right??

Apparently, Kung Fu Panda 2 is generating a lot of conversations. Not just in the adoption world but in the non-adoption world.

A friend of mine's 7 year old son saw the movie and really, really got it (this kid is wicked smart).  He came home and started up a conversation with his Mom about the loss the Panda suffered in his adoption.   He connected that loss to a cousin who was adopted.  "Does he feel sad that he can't be with is real family?"  He asked her.  She immediately corrected him and said that his parents are his real family.  He asked her if adoption was a sad thing.  She told him no, it's happy.  I corrected her.  I pointed out that adoption involves a triad of people.  2 of the 3 parties involved suffer tremendous loss.  The birth family loses a child and the child loses their birth family, heritage, culture, etc.  The only person who doesn't suffer a loss in adoption is the adoptive parents/family (although there is sometimes a loss of fertility but I feel that is a separate issue).  I shared with her that how that loss manifests itself is going to vary from family to family, child to child, adult to adult.   Just like everyone reacts differently to, say a sad movie (some will not be moved, some will cry, some be hysterical, others will roll their eyes and make light of it), everyone will respond to their adoption differently.  Some children, young adults and adults of adoption feel tremendous loss.  Don't believe me - there are lots of blogs out there by adoptees - go read them.  Some children, young adults and adults of adoption feel no loss at all.  There are many factors in what a person would feel from having an open adoption to just their personality and their level of comfort with their adoption.    A person in an open adoption may feel differently from a perso in a closed or semi open adoption.  A person adopted at birth may feel differently than a person adopted through foster care.  A person adopted domestically vs. internationally is going to have difficult viewpoints as well. 

She seemed to be uncomfortable with my end of the conversation.  Which is absolutely understandable and okay.  While she has family members who are adopted (internationally), adoption loss is just not a topic that typically comes up outside the immediate familly - hell, it quite often doesn't come up within the immediate family either!  

My own history being what it is, I guess I'm hyper aware and watching for signs that Dylan is feeling loss from his adoption.  I hope that I am able to convey an open door to him to let him know that it's okay to feel loss, to feel sad, to miss his first family, his culture, his country and it's okay to share it with us if he wants to.

I'm glad this movie is being a cataylyst for conversations about all aspects of adoption, not just the sunshine and rainbows.   I'm grateful for good friends who feel comfortable coming to me with questions - the hard ones as well as the easy ones.  I'm grateful I can go to them as well.  I love my friends as we've all travelled very different roads which makes it easy to find answers to some of life's tougher questions (maybe not answers but at least ideas).

Off we go - update

Well, we aren't going in 2 weeks.  Turns out the researcher isn't available to we are hoping to do it the last week in August which would work better - it's between camp and school.  Less daycare to pay, yay!

In other news, yesterday they were doing roadwork in front of our house.  We decided to drive up the street to meet Dylan's bus.   For some strange reason, Marc was convinced the bus driver would somehow know that there was construction going on (there were no signs) and decided to go over to the next street to keep an eye out for him.  After he walked away, I called the bus company, asked them to radio the driver and let them know where we were.  A second later, the bus turned into the street.  I told Dylan to get his backpack only to find that Marc had it ~insert steam coming out of ears~.  I hear "I'm coming" and here comes Marc, running at full speed, on a wet pavement.  There goes Marc, twisting his ankle and falling into a patch of mud.  Needless to say, the fall triggered Dylan's memory of Marc's seizure and totally freaked him out.  Marc got up, limped over, we got Dylan on the bus and I took Marc home to change.  He got back into the car, put his foot up on the dash and I said, okay - we're going to the hospital. 

A few hours later, we left with an air cast and crutches and instructions to baby his sprained ankle for a few days.

Of course this means all the housework and yardwork we had planned to do this weekend will be done by yours truly - including mowing the lawn.  Let's hope I can do it early enough that I don't end up in hives from the 80+ degree heat we are going to have this weekend.

Wait, I was planning to do the lawn Sunday....  if I get lucky - the rapture will happen and I won't have to mow the lawn.  Oh wait, it's going to be hell on earth so I'm sure I will have to mow - it'll be my pentence for being the heathen that I am.  ~le sigh~

Off we go, into the wild blue yonder!

Dylan has been approved to be part of a study for children with the 16p11.2 genetic abnormality (they are studying both children with the deletion and the duplication.  When we received Dylan's diagnosis (he has the deletion) I, the queen of Google, found the wonderful folks at Simons VIP Connect.  There I found a great chat forum and the opportunity for Dylan to participate in this study.  It's, for the most part, completely non-invasive.  The most invasive part is a blood test and a possible MRI (if we can get him to sit for an hour - ~insert hysterical laughter~).  I'm hoping he does because I'd like them to get a full picture. 

I've found a great group of parents on Facebook and I've heard wonderful things about this study - especially their Boston location.  Plus, because we are going to their Boston location - that means some quality time with our friends Andy, Lori and their three girls (one of which we haven't met yet!).

Gazing into the crystal ball

When my dear, IRL friend Cecily asked on twitter if anyone would be interested in a free psychic reading I jumped at the chance.  Okay - stop rolling your eyes.  I knew it was for fun but hey, with all the shit going on around me I figured what could it hurt.   I called the 800 number at http://www.psychicsource.com/.  It was a neat process and one I've never experienced (the few times I've seen psychics it's been in person).  They offer you a list of psychics to choose from.  I chose one who claimed to be empathic as well as a psychic.  I think her name was Allie but I was walking to work and the morning traffic did make it hard to hear at times.

She asked me why I was calling and I told her I had never done this before.  I just said I wanted a general reading as it pertains to my family.  It was VERY generic, nothing made me gasp and think OMG, how did she know that about me.  However, she just kept telling me that all my problems would be resolving soon.  I really hope she's right.

Great opportunity for parents of special needs kids

As many of you know, a weighted blanket is a great tool for children with sensory processing disorder.  For some, it can mean the difference between a child (and parents) waking every few hours vs. a full night of restful sleep.  Supportforspecialneeds.com is having  a great giveaway on a weighted blanket.  If you need one - go register, tweet about it and blog about it and have a chance to win one!  http://supportforspecialneeds.com/2011/05/04/a-weighted-blanket-giveaway-again/comment-page-1/#comment-1661

WTF was that???

Last night, Dylan melted.  He melted hard!  Crying uncontrollably.  We haven't had a melt like that since before we pulled him off food dyes.  I even asked him (several times) if he had eaten something that may have had "ickies" in it (our word for food dye).  He insisted he hadn't.  He just cried and cried.  None of our bag of tricks were working.  Not the brushing, the back rubbing, the rocking.  Just made him cry harder.  Only when I began to whisper a new story in his ear did he begin to settle down.  I whispered of a wonderful, handsome prince who lived in a big, pink castle with horses and puppies and kitties and his Mommy and Daddy.  I told him about how the prince would ride his horses and pull the reigns to the left or to the right to turn or back when he wanted to stop (he just learned to manuver the horse this week). Gradually, my sweet boy calmed and finally fell asleep.  I laid there for a while, just listening to him breath, smelling his clear hair and wondering WTF just happened.  It started out as his crying over something really silly and just escalated from there.

I think he's still processing what happened to Marc.   Last week, we were running late due to a neuro appointment and my best friend picked him up at day care.  OMG did he flip out.  He screamed at her "I don't want Mommy and Daddy to go the doctor.  I want them to pick me up".  I think he thought Marc was back in the hospital.  Marc told him that nothing would happen to him and he was okay.  I told him after that he can't say that - he's still having seizures (smells and tastes - not full body) and that until it was completely controlled, he was at risk.  Dylan needs to be prepared so we've shifted gears and are trying to let him know that while it's a possibility, if it does happen, it will be okay. 

At around midnight, Marc brought him into our room.  He climbed in next to me, pushed my one arm under his head and pulled the other over his body.  Any time I moved, he'd pull my hand back over him so not a great night's sleep but I do love it when he's a snuggle monkey. 

I'm just worried about him.  He's seemed, well, off lately. 

Those $@$%!@ Teenagers!

~insert tongue in cheek~

I pray I am able to raise a young man like we met yesterday.

Dylan didn't have after care due to Passover so I left work early and picked him up.  Being a beautiful day, we headed to a local park which features several play areas, a lake and a picnic area.  We met my best friend and her 18 month old and set the two of them up to play.  After a while, Dylan announced that he needed to use the bathroom and off we went.  We cut through the picnic area where a couple of teens had arrived.  One had a guitar.  I had to drag Dylan off to the bathroom before he had an accident.  Oh how he wanted to see that guitar, see the boy play.  I promised we'd stop on the way back.

He finished up and tore out of the bathroom and made a beeline for the kids who were setting up to do some sort of art project.  Dylan walked up to the young man and demanded "why you not playing?"  The young man smiled and asked him if he'd like to him play for him and he responded with an emphatic "Yes Please!"  Dylan stood there mesmerized.  His eyes darted between the boy's hands trying to understand how he was eliciting the beautiful music from that lovely guitar.  Dylan loves music and especially loves guitars.  He has one that was given to him for his first birthday from my brother and his family.   It's one of his prized possessions. 

Dylan announced that he needed a guitar like this one and he needed a pick at once.  The young man held out his bright orange pick and told Dylan he could have it.  That young man gave my son the world at that moment (and me an easy out).

When it was time to leave and he began the typical five year old "I don't wanna go!" I simply said "Don't you want to go home and try your new pick?"  Whoosh!  Into the car he went.  He didn't want to pick up Daddy from the train.  He just wanted to go home and use the new pick.  We finally got home and he set about strumming his guitar.  I could see he enjoyed the vibrations and was very happy with the music he was making.  Oh of that young man only knew what he gave my son.  An even deeper love of music.  A deeper understanding of how things work.  An appreciation for what it means to share a bit of yourself with another.  Last night he slept with that pick firmly in his hands (and even woke with it still there).

If this is an example of what the teenagers are like today, I think we are in good shape.

The Joys Of Stimming

We had the pleasure of attending a Passover Sedar for families with adults and children with special needs.  I was so excited to attend when I heard the description of the event.  I was told that if a child needs to walk around, run around, spin, vocalize, bang on the table, whatever, it was a safe place.  It was a sedar where children can be themselves and parents didn't have to try to control their kids so as not to offend, bother or embarrass someone else.  Everyone could be themselves and enjoy the holiday together.

It was everything and more.  I also realized something about stimming I hadn't quite latched onto before.  It feels good.  Really good.  Does your child spin?  Join them sometimes, you'll have a better understanding of why they do it.   Do they bang or drum on a table or clap their hands?  Try it when you are stressed and want to jump out of your skin - it helps!

Dylan loves to vocally stim.  He does this high pitch hum or hoot.  At the sedar, several people were verbally stimming at different octives.  The result gave me a similar sensation I get when I've chanted in yoga.  That deep in your chest vibration and it hit me.  Just like a neurotypical person chanting Ohm gives a sense of peace and wellbeing, a vocal stim (which it may sound harsh to someone else's ears) is probably bringing that person their peace. 

So how does your child stim?  Have you ever joined them?  If you haven't - try it - you may like it!

IEP Update and OMG some real drama

We had our IEP meeting - we got everything we asked for.  Yay!

Drama.

2 Fridays ago, we had some business to take care of so Marc and I took off work.  It just so happened that Dylan was off school.  Great timing.  We sent him to day care for the morning and we went and took care of our junk.  We went to pick him up at daycare.  He was outside playing.  We asked if he wanted to go to a different playground and fly his kite.  That was met with an emphatic YES! 

We were walking to the car when I hear Marc behind me say "OMG What is that smell?!"  I turned and asked him what he was talking about - I couldn't smell a thing.  He was pointing a the ground with his head twisted over his shoulder.  I touched his should and asked again.  He started to stagger and I caught a glimpse of his face which was hideously contorted.  Then, he started to shake.  As she shook, he was falling.  B'H I was able to grab him and lower him to the ground (just got a scrape on his chin and on both hands).  He laid on the ground convulsing and I'm screaming.  A woman stopped her car in the road and jumped out calling 911.  I turned Marc over.  He was blue, frothing at the mouth.  I couldn't find his pulse (may have been none or may have been I was too panicd to find it) so I started chest compressions.  People came out of the center to help.  One man (who I later discovered is a doctor) asked me who I was.  When I told him I was his wife, he told me I shouldn't have to do cpr and asked if he could take over for me.  I allowed him to and after a few more compressions was able to find his pulse.

Now, dear friends, the thing that sucks the most out of this is that Dylan was right there for the entire thing.  When Marc collapsed he walked over to him (when he was face down) and tried to look into his face.  I shoo'd him away.  I didn't want him to see his father like that.  I didn't want him to see any of it but he did. 

I called Marc's mother as soon as I knew what hospital we were (unfortunately) going to.  I called my Mom.  I checked on Dylan (who was brought back into the center) and made sure he was okay - I assured him everything would be okay and I ran to the ambulance.  Once inside Marc started to awaken.  He was out for a good 20 minutes.  According to him, one minute he's walking with his family and the next he's being attacked by a group of men who are holding him down trying to get a needle in his hand.  Scary.  He fought them the whole way to the hospital.   Once at the hospital he started to calm down.  My Mom met us at the hospital and, because Marc was stable, his Mom was there, she ran me back to the center to Dylan and to my car.  Dylan was so freaked out and rightfully so.  I thought it would be good for him to see Marc before he went with my Mom so we brought him to the hospital.  Bad idea - made things worse.  He didn't want to go near Marc.  My Mom took him to her house and he spent the night.  He asked a million questions over and over and over again and my Mom patiently gave him simple answers over and over and over again. 

He's still asking the questions....

Why did Daddy fall down?
Why did Daddy's legs shake?
Why did you take away Daddy's gum?  It's not nice to throw gum in the street Mommy.
Why did yuo push on Daddy's tummy?
Why was Daddy in the big bed?

We had questions of our own.  First they told us it was a heart attack.  Then they said that seizures can raise cardiac enzymes and that it was "just" a seizure.  The idiots, I mean hospital, said it was from his meds.  His discharge consisted of a nurse removing his IV's and telling him not to take the meds any more.  That's it, no discharge papers, no signing something nothing.  Oh, and get this - the neurologist came in on Saturday - spoke to Marc for 5 minutes, stepped out to take a call, came back in for another few minutes and got another call and never came back.  Virtua Hospital blows chunks. 

Tuesday we went to a real hospital with real doctors.  They did an EEG and came back later for the results.  We fully expected to hear it was the meds and not to take them and buh bye. WRONG.  Abnormal brain activity in the temporal lobe.  Looks like he has a seizure disorder and the Wellbutrin he takes lowered his threshold for a seizure.  Since he has been taking it (for 1.5 years) he has complained of strong smells/tastes that weren't there.  Those were little seizures confined to his temporal lobe.  The seizure 2 weeks ago spread past the temporal lobe throughout his brain causing a grand mal.  Thank Gd he wasn't driving.  Thank Gd he wasn't alone with Dylan.  Thank Gd he wasn't alone.  So now he's on anti-seizure meds but is still at risk for another one.  He can't drive for 6 months.  If he has another seizure -he won't be able to drive for a year. 

Oh, did I tell you they found Dylan's has a genetic abnormality?  Yeah, he has a deletion at 16p11.2.  Explains a LOT and has put my mind at rest in many ways.  You can read about it HERE.  I now know that the seizures weren't caused by any type of abuse or lack of care which gives me a lot of peace.  We meet w/the genetics folks at CHOP and they said we are doing all the right things and they can't predict his future.  I told them that I don't care - whatever it is - he'll be awesome :)

An Update and Observations

I called the caseworker at Dylan's school.  I asked her where we stood on our request to get him a one on one.  She said "well... this year isn't going to happen".  I stopped her and explained, again, that we are not unreasonable and we understand that this year is shot where that is concerned.  HOWEVER, I wanted to know if my request for a one on one will be in his IEP.  The answer was yes.  There are still some paperwork bullshit to get through but yes, it will be done.  ~insert happy dance~

Observations....

1.  Since pulling Dylan off food dyes (all), he no longer has uncontrolable meltdowns.  When he does melt - it's for good reason and it's easily managed.

2.  My son is smart.  Like wicked smart.  I explained to him once about how there are certain foods (like candy and ice pops) that have "ickies" in them and that is what makes him so angry sometimes.  I have since found out that he will turn down candy because they have ickies or ask someone to check to see if something has ickies in it before he'll eat it.  He understands what those nasty dyes do to him physically and emotionally and he just doesn't like it.

3.  We paid over $10,000 in medical last year between me and Dylan (mostly Dylan).  It was worth every.single.penny.  His speech is coming along beautifully, we are parenting better, and he loves the therapeutic riding and just thinks it's fun.

4.  We are so very blessed to have Dylan as our son.  His smile lights up every room.  He's so full of love and is able to share it with those he cares for.  He's smart and incredibly funny (although I could live without his adoration of everything that is farting). 

5.  I'm getting better at filling his sensory needs with the strangest things. Last night, he was a bit overstimulated so I had him roll limes for me for juicing.  I placed my hand over his and pushed down and rolled the lime around the table.  He did it for as long as he needed and then went into the other room to play - calm as could be.

6.  I need to work on not getting upset when his need for sensory input involves getting into dirty water after being told not to go near it.  Gross!  I have to realize if I don't catch the signs, he'll do it himself. 

Oh that reminds me, his teacher told me that if he needs sensory input, he'll actually go into the corner, get the brush and start brushing himself.  How cool is that?