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The Writing Is On the Wall….=)

A few weeks ago, I finished decorating Diego’s room. 

Sea Animals out.

Dinosaurs in.

At the head of his bed there are two T-Rex dinosaurs, I flippantly mentioned to Diego that we could put his name on the wall in between the two dinosaurs.

I told him that once I found the letters that I would put his name at the head of his bed.

Imagine my surprise this morning when I went into D’s room to wake him for school.

“Mommy look!”

“My name!”

“I found the letters!”

Image

He wrote it on the wall in marker….

But….he wrote it.

So obviously, I couldn’t be upset.

He has been working very hard at writing his name and I did tell him we were going to put his name on the wall.

LOL

 

 

 

 

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Hope Is In Short Supply These Days

Cynthia (our ABA therapist/saint) and I decided that it was time for her to help me get  Diego to change out of his uniform after school.  I can’t seem to get him to allow me to do it (or anything..really), let alone ask him to do it himself.  It isn’t a matter of his ability to physically perform the action of dressing, it is a matter of overcoming his anxiety.  The anxiety (esp since school has started) makes him incredibly rigid, which then turns into a huge protest and then a self-injurious melt down.  When Cynthia arrived yesterday I warned her about what she was in for and asked when I should intervene. 

I trust her, she has helped us so much and has a heart of gold. 

She said that if she needed me that she would peek out and grab me, I told her not to worry that I would be right by the door. 

D was already protesting as they walked over to his bedroom, I knew this was going to be major.

I went and sat on the couch, D’s bedroom is right by the living room so I could hear everything. 

Which was both a good and bad thing.

D immediately started screaming and crying “NO I CAN”T GET DRESSED!!!!”

Cynthia calmly told him that he could do it, she tried to use her reinforcers, and tried to negotiate.

The situation just got worse….much worse 

Diego then began screaming “Mommy help me please!!. My mommy always helps me!!!!!!!!!!.”

It took every ounce of strength I had not to run in there.

 He needs to overcome this rigidity that keeps him from doing so much and nothing I am doing is working.

I HAVE to let Cynthia try. 

The screaming continued, he started to hyperventilate…I could hear every breath, every hiccup, every yelp.  Then he began to hit himself and kick the walls.  I could hear Cynthia’s calm voice telling him that it was ok, and that she was there to help him.  That once he was just a little bit calmer, she would call me in to help him.

This same pattern of behavior went on for about ten minutes while I sat crying on my couch.

I have never felt as helpless as I have for the past two months.  This same type of melt down happens multiple times everyday.  What I find amazing is how he verbalizes how he his feeling during these times. 

He will scream and cry “I want to calm down but my brain won’t listen, my body hates me that’s why it hurts me, I am trying very hard not hit you mommy!!!”  His body is tense, face splotchy and red, and he is typically on the brink of hyperventilating.

and I can’t do a f*cking thing to help.

Not

one

thing

Cynthia finally peeked out and I ran into his room, he was drenched in sweat and hysterical.  I scooped him up in my arms, hugged and rocked  him.  We laid in his bed and I rubbed his head, repeating over and over  “it’s ok, mommy is here to help you”.  I also told him that Cynthia and Stella want to help him too. 

After about 5 minutes his breathing was a bit more regular and the crying had subsided.  I gave it another 5 minutes before revisiting the task of undressing.  I told him that if he can just take ONE sock off that I will do the rest.  He protested in the beginning, but I told him that we could do it together.  He eventually took the sock off, and I praised him like he won an Oscar,and  I meant it.  Because for me….Diego removing one sock, FEELS like he won an Oscar.

Things finally calmed down and at this point Stella the ABA supervisor had arrived .  Cynthia  filled her in on what happened and we all agreed that the rest of the session would have to demand less from Diego.  Stella began to play Dinosaurs with D and Cynthia and I went to talk in the kitchen.  She gave me the run down of what happened in the bedroom and there were  tears in her eyes as she said “It is so hard to watch him like that.  You can tell he is trying so hard to get it together.” 

So of course this opened the flood gates for me, I excused myself and went to the bathroom.

The rest of the session went on without any more major meltdowns. 

Stella came up with a new plan to reduce the demand and use the token/reward system for EVERYTHING he does. 

I listened and I will do it all,  but honestly I am not incredibly hopeful.

Hope is in very short supply these days.

I always try to be so PC about autism, but you know what?

I hate autism, I absolutely despise it.

Do The Best You Can and Never Stop

Diego’s first day at the “Big School” is Monday. I have spent the months since our IEP meeting preparing him for Monday and have been in constant contact with our team from the school.
Last week we visited the school numerous times, and I can’t even begin to express how much everyone at that school is invested in Diego’s success.
So why can’t I get this knot out of my stomach??
I have come to expect these knots as the parent of a child with autism.
They….Just….Don’t….Go….Away..
His teacher this year is amazing and his private school teacher ended up getting hired at the “big School” and she has been such an amazing resource for everybody there. I have even prepared for Diego to have a 1:1 aide for the after school program if he needs it.
But I still feel like I am missing something, although I know I am not.
My ‘I’s are dotted and my ‘T’s are crossed.
My blog has been severely neglected and I miss it so much.
Things at home have taken precedence over everything, and it isn’t just D.
Lyric is a tween almost teen and is acting every bit of it, not to mention his absent father of ten years has come back in his life. Which in the long run is great, but makes everything so much more complicated. As Lyric’s mom I am doing everything I can to facilitate this relationship, no matter how hard it is for me.
He wants this and deserves it.
I did find out a couple of days ago that Lyric scored advanced on all of his standardized testing, which made me feel great.
Like I am achieving the balance of being his and D’s mom.
I love them both so very much
Diego’s father and I have been civil, which is amazing considering how bad things have been in the past between us. But he is still heavily in denial about D’s autism. He noticed D can’t ride a scooter and decided that it was my fault, because I don’t take him to the park enough
*sigh*
When I attempted to explain that the scooter issue was more due to his gross motor delay than a lack of park outings, he told me that there is nothing wrong with Diego. I told him that I agree that there is nothing “wrong” with our son, but that he does a have autism and that includes different kinds of delays. He disagreed with that as well.
So instead of attempting to convince him otherwise I just listened, thanked him for his opinion, and politely explained that I will keep listening to the experts with extensive knowledge about autism (which include myself).
Diego started ABA in July and I already see tiny signs of progress, we also switched meds and I believe that is helping as well. He has been having some issues with his eyes though and I am taking him to the opthamologist in a week. I hope it is just his allergies and nothing else.
My husband is grieving and it is a deep grief that seems to changing the core of who he is. I wish I could write about the implications of it all here, but he doesn’t do public and if he gets wind that i did, it will just make a very difficult situation so much worse.
So I won’t.
To say my plate is full wouldn’t even cover the magnitude of the things I am facing.
I don’t have much support right now, which makes everything just seem so much harder. The needs and wants of those close to me currently trump my own, and that is ok for my boys, but not the others.
Too bad they haven’t gotten that memo.
But I haven’t set any boundaries either…..it is hard to do that with people you love.
I did take a break for myself and went with a group of friends to Vegas for a weekend. It was interesting, as the last time Iwas in Vegas was ten years ago, but it really isn’t my bag. My sister kept both of the boys and I was so grateful because she is one of the few people I can leave them with and not have to worry for a second. She is amazing and I am blessed to have her.
I have started seeing a therapist, it has been a long time coming.
I will be 31 in a week or so and have promised myself that I will finish my nursing degree, even if I am an old lady when I finally finish.
I need to do it for myself.
I also think I need to make blogging more important than it has been.
It is my way of getting all of this out.
Expect a post about the first day of school soon and good luck to everyone on their first day back as well!

Hello Old “Friend”

I have spent the last few weeks navigating the behavioral equivalent of a mine field, never knowing if the next move I make will start D’s ‘rumbling’, which is the pre cursor to the complete meltdowns he has been experiencing too many times a day to count.

We are three weeks in to a med change and holy shit has it been a nightmare.  When D started the Risperdal I was concerned about weight gain, but thought to give it a try because things with his behavior had become nearly unmanageable.  It worked, but D was eating non-stop.  I tried to power through it by giving him low-fat and healthy snacks but after a ten pound weight gain in two months I asked our neuro to switch it.   We also took D off of the Tenex as we couldn’t increase the dose because it made him too emotional (see random frequent bouts of crying) and the dose he was on was barley helping his focus.  We titrated the Risperdal and Tenex down and then the new med, Abilify, up slowly.

So it has been a long 3-4 weeks, I wrote that already..didn’t I?

The past few weeks have left my poor brain addled and my body using whatever quiet time it has to sleep and rest.  Aside from the mindless Tumblr browsing and posting, not much has been happening that requires too much thought.  The daily problem solving has taken some if not all available brain power.  Any autism parent reading this knows what I mean about the problem solving or ‘redirecting’ as the therapists like to call it.  It is an exhausting  feat when your child is having an autism low on the roller coaster ride.  Although I did manage to force myself out for the 4th of July and had a good time. 

There is a silver lining in that this past week D’s  tantrums  have decreased a bit and the behavioral interventionist came in.  She is very nice, but I swear that if one more of them asks me why D is getting ABA now, I might bite her/his head off.  I get it, he is 6 and should have started years ago.  Ask the bastards at The Regional Center why it took so damn  long.  I promise that if I had the money and could have paid out of pocket for it, that it would have been done 18 months ago when I knew Diego had autism. 

*sigh*

Sorry, I am sure they are just doing their jobs…but it is frustrating. 

On another note, I had almost made it past the “what did I do to cause D’s autism?” stage and then this hit:

Antidepressant use in pregnancy may raise autism risk 

I took Zoloft from week 11 until I gave birth to Diego.  When I asked about the safety of taking this med while pregnant, I was told that in the many years it has been used that no adverse reaction to the baby was documented.  I was told that the unborn children of depressed mothers had low birth weight and other complications. 

With my history of pre-term delivery I figured I should take the Zoloft since it seemed that “the benefit outweighed the risk.”

In my second trimester the doctor increased the dose.

I had recently been diagnosed with SVT and put on modified bed-rest, then at 24 weeks strict bed-rest for pre-term labor.

Strict bed-rest  consisted of going from my bed to the couch, if I didn’t do this they threatened to keep me in the hospital for the rest of my pregnancy.  Anyone who has been in the hospital for more than a week knows that would be hell on earth.   So the Zoloft seemed like a god send.  It erased most of my crying spells caused by being confined to my home 24/7 , relieved some of my anxiety about the possibility of an early delivery, and eased my stress about the disastrous relationship I was in. 

Now reading that article I feel selfish. 

I feel like I should have just powered through those things, as least while I was pregnant, without taking the Zoloft.

Then pop all the pills I needed to after he was born.

Maybe if I did it that way, Diego wouldn’t have autism.

Maybe if I had done it that way he wouldn’t have to struggle everyday like he does now.  Here lately screaming in frustration “I can’t take this anymore” or “Why won’t my brain listen to me!”

For the past four weeks I have been at a loss on how to help him. All I can offer when he screams like that is a hug and and “it’s gonna be ok”.

But will it? 😦 

My heart breaks for him.

So whether or not the study is as concrete as I would like it to be, it only takes a little science to rattle me….apparently.

Like an old familiar enemy, Guilt creeps up again.

I kinda don’t need that right now…

The IEP Meeting

Diego’s IEP meeting was on June 16th, to say that I was worried about it would be an understatement.  There was no option of private school if the IEP meeting was a disaster.  The week prior to the meeting I went to visit the school.  Lyric went there all five years of elementary and did amazing. 

I have always been impressed with the school.  But I needed to get a feel of it from Diego’s perspective as best as I could.  The VP was the one taking me around the school.  One of the things he said in passing while we were walking around stuck with me;

“We will do whatever Diego needs to be successful here.”

Did you hear angels singing when you read that??

Because when he said it, I did.

The school has added a few more things to help their students, a therapy dog in the reading room for students that are too anxious to read aloud to their peers or teachers, yoga once a week, an organic garden that the children tend to, and a fitness arcade (think of  a gym with Wii, Connect, and DDR). 

Needless to say I was pretty impressed. 

After I visited the elementary school I was off to the middle school for Lyric’s academic fair.  There I found out that Lyric’s long-term sub was actually going to be teaching at the elementary school the next year and that she would be Diego’s teacher. 

Random right?!?!

I spoke with her and she was amazing, I found out that while she can teach typical classes that she has her special education credentials and that she taught a less sever day class the year prior year which was composed of 12 students, 11 with autism.  She started out throwing ideas to accommodate him in a typical class and asked about his IEP meeting.  When I told her that it was the following week, she said that she would arrange to be there.

Do you hear the angels singing again?? 🙂

I was very optimistic after  leaving both schools that night.  But I was worried about how it would all go once everyone had to put these things in a black and white legal binding document. 

The day of the IEP came and I was as ready as I could be.

Diego’s Kindergarten Teacher Miss Kelly was coming with me and had prepared work samples along her own list of Diego’s areas of strength and challenges.  I had all of my questions and goals written out, ten copies of Autism Life Skills by Chantal Sicile-Kira ( the most helpful book I have read to understand my baby) with a little note explaining why I was giving them the book, and a box of Uncle Biff’s Killer Cookies (I can’t bake cookies 🙂 ).  Diego’s goals were very hard to write as the initial district assessment was NOT data based.  One of my requests was going to be that the school re-assess him so that we had actual data to write goals from.

Kelly and I drove together and got there early.  I was incredibly nervous, but ready to go. I had written everything down so that I wouldn’t forget a thing.  Public speaking  has never been a problem for me, but when the stakes are so high much of any skill set can disappear.   

The pressure to advocate for Diego was immense. 

The meeting began. 

The Psychiatrist, Principal, Vice Principal, Speech Therapist, Counselor, Resource Specialist, and Head of the Charter School Special Ed Consortium were there.  Once introductions were out of the way they began  the meeting by asking me where Diego was now. 

I cried, well not full on crying but got choked up. 

Damn it! 

I told them of the progress that Diego has made and the challenges he still faces.  I told them of his wonderful personality and his bad days.  After I did that I went over his areas of need and what I was concerned about in the big school.  Everyone came forth with ideas and solutions, this dialogue about how to best accommodate him went on for about 30 minutes. 

I was in heaven!

They LISTENED to me, and they were as concerned as I was.  They understood the nights I spent lying awake at 3am worrying about how he would do at recess.  While we were on the topic of Diego not knowing any of the kids at the school, the speech therapist chimed in with;

“Well  we can be his friends, until he makes some here” 

The ENTIRE TEAM nodded their heads in agreement.  She asked that I bring him the week before school starts to meet her and his teacher echoed the same sentiment.

It was all I could do not to run over and hug her.

We discussed his current IEP and the difficulty of writing goals from the assessment.  They stated (before I did)  that they wanted to re-assess at the beginning of the school year and then we would have another IEP meeting for his goals.  The information Kelly presented was incredibly useful and the entire team thanked her for coming. 

I am so thankful for her.  

Every member of the team grabbed a book and expressed how excited they were to read it.   The meeting ended and we had a plan in place, a good plan.

After the meeting, the head of the Charter School Spec Ed Consortium gave me her email address,cell phone number and said to contact her any time.  Then she hugged me and said that this team was amazing and that Diego would be in good hands.  It turns out that her 22-year-old son has autism and just graduated from college. 

She gets it.

I left there with tears of relief rolling down my cheeks. 

The next day I sent an email to each person that was at the meeting to thank them and all of  the responses were incredibly positive. 

But there was a specific one, from the principal,  that brought me to tears.

 Hi Shivon,
You are such an inspirational parent.  You have taken such a proactive role as your child’s advocate, and have devoted your life to ensuring that Diego and your family reach their full potential.  I was humbled after our meeting.
Ms. D

I also just want to thank each one of you that offered support and advice as I prepared for this.  🙂

IMFAR Part 2

Once Alex was done interviewing , we walked back to grab some coffee.  As we walked around this part of the conference, I felt like I was in Disneyland.  I met a man that invented a vest that works similarly to Temple Grandin’s Hug Machine, I came across fMRI’s and  fancy EEG’s, but what stood out most to me was the level of comfort to just be.  This conference was filled with people who ‘got it’ whether on the spectrum or not.  It was so beautiful to watch, and I couldn’t help but to fantasize about a world like that.  A world that doesn’t notice the difference but does notice all of the amazing things inside the person.  Speaking of amazing things, back to the story. 

Alex and Noah needed to edit some video and after Susan, Adam and I found some food we headed over to the video room to join them.  Susan and I sat down and talked while the guys were intently focused on editing.  After a while I walked over and checked out some of the videos and couldn’t help but gush about how professional it all was, especially on the “G-string budget”

Did I mention that Alex has a fantastic sense of humor?!?!

He does.

All of the guys did.

It was getting later in the morning and I had to get home, but REALLY didn’t want to leave.  I gave myself another hour and I am glad I did. Susan and I met a woman with four children (one or more on the spectrum) getting her doctorate.  I have no clue how she is managing it, but she is and I think that it is fantastic.  I met a young man (in his teens)  who had won a trip to the conference and he was absolutely charming.  I also met a wonderful woman from Autism Speaks, please forgive me for not knowing everyone’s name.  I was so doped up on cold medicine that morning that I am surprised I remember half of what happened. (a week later my cold turned into pneumonia…blah)  Then the next thing I knew John Elder Robison walked in.

Seriously!!! 

He and Alex discussed the conference and what exactly Alex had gotten on video that morning.  One of my favorite parts, was when John told Alex, Adam and Noah how proud he was of them. 

I just wanted to hug them all!

But I restrained myself….LOL

I did watch John give the guys this amazing lesson on microphone frequencies and how fast sound traveled.  It was amazing to watch all of their brilliant minds at work. 

Simply amazing. 

I did everything I could not to cry as I thought about all of the challenges associated with autism that our children face that can sometimes cloud how incredible their minds are.  But I was also hopeful watching the four of them working together (some on the spectrum and some not.)  It was a great dynamic to witness. I did get a chance to talk to John and I thanked him for writing “Look Me In The Eye” and also explained that it was my first peek into what Diego’s world might look like.  He was fantastic about it as I’m sure that I was talking way too fast 🙂

Susan and I spent some more time talking, she is doing amazing things for people on the spectrum transitioning out of high school and into college.  When it was time for me to leave, I was bursting with love and hope.  I got to see and hear that the hard times do get better. 

The biggest thing that stood out to me was that I felt like I was with “my people”.  I never had to explain what the acronyms I was using meant, or give my quick  break down on autism.

Everyone there just knew.  It was great!

I am so thankful to Susan, Alex, Adam, Noah, John, and every other person I met for such a life changing experience.

Please Read Line #4

 

The kids in D's class were asked what they would do with 100 things. This is a snapshot of D's list

We are in the lobby waiting for our OT and three boys about D’s age are playing with the waiting room toys.  I watch Diego watch them, I know he wants to play with them.  I whisper to him “baby go ask them if you can play with them.” 

He starts to rubs my ears, he is nervous. 

“Baby it is ok, go on.”

I long to hear him say this to any child, but just like all of the other times he looks at me and says “I can’t.” 

He is past nervous now, he is paralyzed with fear at the prospect of approaching these kids.   

His anxiety is palpable. 

I am trying to think of ways to facilitate this interaction. I offer to walk with him over, he says no. 

He crawls in my lap, pulls my head to his face and whispers

“I’m scared.”

My heart is broken for the umpteenth time.

You can say a lot about our kids, but please don’t tell us that they are not interested in having friends.  As line #4 states if Diego had 100 friends, he would play with them.  

Our kids WANT to be social.