Who Runs The World??

Me: *singing* “Who runs the world?!” *shouting* “GIRLS!!!!”

D: *shouting* “BOYS!!”

Occasionally Lyric’s moody teenager self will join in the silliness. 

Then we all laugh!

Every time this song comes on in the car the above scenario plays out.  But recently I started thinking,  am I doing all I can to teach Diego that men and women are equal??

Like most autistics, D is a very black and white thinker, grey areas are difficult for him. 

Due to his very traditional (dare I say slightly ignorant) father, cartoons, and the media,  D has adopted the thought process that generally boys are better than girls.  

After one of our singing sessions, I came up with a plan to show Diego that men and women are equal.  It would have to be good and convincing because this can be a grey area in Diego’s eyes, especially when he is being  flooded with ideas to the contrary. 

*sigh*

I won’t even go on my rant about how frustrating it is to see the enormous amount of sexism and misogyny in the media and how nobody really ever takes issue with it…I won’t.

Not here.

Anyhow I started the equality discussion with Lyric when he was about 4, and it still continues everyday.  So one evening I sat down with D and talked about how men and women can do the same job.  He looked at me and said “no girls can’t do boys’ jobs because they are not strong!”  So I pulled out our iPad and on YouTube and showed him videos of male nurses, female construction workers, male receptionists,  and female car mechanics.  With each video his eyes got wider.  I explained that a lot of people  think that girls are not as strong as boys, but that really isn’t true.  I talked to him about how his Nana is awesome at building things and how his “twin friend” Tomas’ favorite color is pink.  I could almost hear the wheels in his head turning.  After I was done, he didn’t have much to say. 

He stood up, walked over to his Legos, while muttering “OK.”

Not sure if I got my point across I made a mental note to broach the subject briefly in our everyday conversations. 

A few days later our silly song “Run The World” came on and this time after “Who runs the world?!”

Diego responded “BOTH!!!!!!!!!!”

=)

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.

IMFAR Part 1

The IMFAR Conference was held in San Diego a few weeks ago.  Susan, who blogs over at Taking The Awe Out of Autism ,wrote to me on FB and said she was coming down to attend the conference and we arranged to meet up for drinks.    There are so many women that blog that I have developed friendships with and each one of them is amazing, the great thing about the internet is that it doesn’t matter how far you are from each other.  There is still this amazing “autism mom” connection that we all seem to have.  With that being said most of them live pretty far from where I am and I was super excited because I would actually get to meet a woman I admired so much in person!  We arranged to meet up that Friday night for drinks.  Friday comes and of course it is the day from hell! Work was a nightmare, then after work I had to shoot to D’s new elementary school to observe the special day class (which deserves an entirely separate blog), and then race to pick up the boys (on opposite ends of town) to get home in time to meet with the behaviorist to finish D’s evaluation.  On top of everything else I felt like I was getting sick. 7 o’clock  rolls around and Diego is at the tail end of an awful day, I wasn’t too concerned because my sister was coming to watch the boys and if anything makes D happy, it is his Titi.  My sister showed up and Diego was still struggling, bedtime had been particularly rough. My head was pounding and D’s yelling and screaming just made the evening that much worse.  I made the decision to text message Susan and ask to reschedule, I just couldn’t make it.  We ended up deciding on breakfast the next morning, I was so happy that it worked out because I had really been looking forward to seeing her.  Saturday morning came and I dropped off both kids with family and headed down to the hotel to meet Susan for breakfast.  I had no clue she was staying at the actual hotel that was hosting some of the IMFAR conference.  We met down in the lobby and I felt like I had known her forever, she is such a lovely person.  As we were walking upstairs she mentioned something about “meeting up with Alex”, at that point my mind raced back to a text message from her on Friday that said “Alex and John may come too”, I didn’t give it much thought at the time because things were so nuts.  But when she mentioned it while walking upstairs I started to wonder who Alex was. 

Because it sure sounded like should have known. 🙂

When we got upstairs I was intriduced to Adam and all three of us grabbed some food from the continental breakfast area.  Adam and Susan were discussing ALex’s wherabouts and then it hit me! Susan and Adam were referring  Alex Plank, the young gentleman that runs Wrong Planet!  Wrong Planet is an amazing web community of people with neurological differences. 

WOW! 

LOL…Yeah I said WOW!!  I was really excited to meet him!  Before I go further let me explain something, when D was first diagnosed I was scouring the internet for hope, I desperately needed to know that another person like my child grew up to be happy and successful.  I found Alex Plank and John Elder Robison.  These two men’s stories were the first glimmers of hope during an incredibly dark time.  So to know that I would be meeting one of them in person was so exciting! 

But I kept my cool 🙂

We walked over to the an empty hotel room that was being used as a video room.   Kind of like a headquarters for  Alex,Noah and Adam while they were filming coverage of the conference for Autism Speaks. When we walked into the room, Alex and Noah were very busy gathering this cord and that mic, so I just tried to stay out of the way.  Susan introduced me to Alex and Noah and we all said hello and then it was back to business.  Alex was interviewing a young woman about her research with autism phenotypes and it was time to go meet with her.  Susan, Adam and I followed Alex and Noah, while Alex was interviewing the young woman the rest of us walked off to look at all of the amazing research that is being done to help our children and chat.  I was floored to see the enormous amount of science and dedication going into helping everyone  better understand poeple on the spectrum.  Seeing it all  gave me so much hope.  Susan gave me some amazing advice and we shared stories.  Adam mentioned that it was interesting to hear the mother’s side of autism.  We smiled and looked at each other, we are in the trenches every day, we don’t know anything else.  

I have so much more to write but it is too much to read or write in one sitting, so I am going to use Jess’ great idea of breaking this story up a bit!!  Stay tuned for part two of  my amazing Saturday morning 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.

Light It Up Blue

Jess from Diary of a Mom wrote a letter to our president, asking him to Light the White House Blue.  It is an eloquent and beautifully written letter and it is in the White House as I type this.  Not yet in the hands of President Obama, but hopefully soon. 

We have about a week.

We need your help, if you haven’t commented on the letter please go here ——> Letter and do so. 

President Obama needs to see that Autism affects so many families in the US.  Statistics are one thing but our voices, united together, are so much more powerful.  I thank you in advance 🙂

A Special Needs Tribe

Every second and fourth Friday at my clinic is our epilepsy clinic, these patients have seizures that require the care of two world-renowned epileptologists. 

It isn’t a coincidence that a lot of these adults are developmentally delayed and due to tragically long wait times in our clinic, I get a lot of time to get to know the caregivers and parents of my patients. 

I get to speak with moms that have raised their wonderful children in a time when there was little to no support, I envy their strength.  We compare stories, services, bad times, and good times. 

I always end our conversations by telling each mom that she is doing an amazing job, each time I say it, one or both of us cries. 

Every second and fourth friday I am surrounded by people who ‘get it’, they get the good days, the bad days, the fear, and the hope. 

My mission on these days is to be a shoulder, an ear to vent to, and to let them know that I will make sure that their children are medically taken care of.

I ‘get it.’ 

We are a tribe of parents with children that have special needs.

After these clinics my level of emotional exhaustion varies,and it is always directly connected to what is going on in my home. 

I found myself in tears yesterday as the mother of a young man with severe autism and I shared stories of  “when one thing seems to be resolved, another thing gets thrown at you.”

Another mother that has two boys with Downs Syndrome started crying when I told her that her boys are the highlight of my day when they come in and that she has done a great job.  She tried to brush off the compliment by saying “she just does her best” so I grabbed her hand and told her she that has raised two amazing young men (seriously I love them!). 

We hugged and cried for a long time.

We need to hear this.   The dark times are so dark for most of us and even the wonderful times seem to be tempered with a sense of foreboding.

When I got home after workmI logged onto Facebook and  Beth had reposted a blog entry by MOM-NOS on Hopeful Parents. 

 Just in time.

ANYONE who knows ANYONE that is raising a child with special needs, should read it.

Seriously.

Here is the link.

Thank you MOM-NOS for being so courageous and helping the rest of us put words to what we feel.  You have done something amazing.

Keeping The Lanterman Promise

You can find me up on my soapbox over at Hopeful Parents 🙂

“You can’t wring your hands and roll up your sleeves at the same time.”~P. Schroeder

Overwhelmed would be an understatement, but the closest word to describe the past few weeks. 

The details of everything would bore anyone, just because it would be too damn long to read.  But I need to get at least part of it out, so here is the condensed version.

In addition to running an entire clinic, with minimal help (see staff shortage and the hospital’s tragically long  hiring process), Diego has had me in the ER and doctors offices a lot more than we typically are.  In he past D has had some abnormal test findings for his brain and DNA, but typically we don’t visit the doctor ‘doctor’ this much.   

The abnormal brain finding shows that the part of his brain responsible for his visual motor skills  is being pressed against by two dilated perivascular spaces, so he will have to work harder in an area where he already has difficulty due to his autism. 

His DNA shows  a balanced translocation and chromosome deletions that currently have ‘undetermined clinical significance’ (aka waiting on research to catch up) and now we can add a benign abnormal heart rhythm with possible premature atrial contractions or the benign abnormal heat rhythm with panic attacks.  The brain and chromosomes are old news for us as it has been a few months.  The heart is new and is what has kept me running around (even more so than usual) like a chicken with her head cut off.  We are currently waiting to see the cardiologist to hopefully give him a clean bill of health, other than the arrhythmia.  While I am hopeful that what is going on has nothing to do with his heart, it breaks mine to think that my baby at the age of 5, is having panic attacks. 

Diego is verbal, but he still has a very hard time with his expressive (and pragmatic) language.  Anyone that has experienced an irregular heart rate can attest to the fact that it causes one to be more aware of what their heart is doing and usually causes alarm, even if one already knows that it is due to caffeine, etc…

But I think that when it happens to Diego in addition to the usual things that assault his senses, it is all too much and ends in a panic attack :(. 

I am almost positive this isn’t a cardiac issue, Diego’s anxiety is constantly through the roof.  If it isn’t a cardiac issue and is an anxiety issue, I am sure someone is going to hint to an anti anxiety med for him.  To possibly avoid any new medications, I am going to work with him on new relaxation techniques and how to apply them when his heart rhythm changes.  I will still obviously work on recognizing and expressing the anxiety, but the heart rhythm is tangible and my little concrete thinker will hopefully apply the relaxation techniques that I teach him are “for when his heart acts funny”.  I really don’t want him on anymore meds. 

Behavior has also been an issue, we were tweaking his Risperdal dose (not causing the heart issues I checked 🙂 ) and his beahvior was just escalating.  After emailing Beth and Kim (Thank you both for being amazing) and hearing about their medication experiences it was all too obvious that I needed to take him back down. 

So I did. 

I was  increasing it on our Neuro recommendation to hopefully decrease the frequency of meltdowns, especially since it had already provided some slightly positive results with the intensity of his meltdowns (aka his self injurious behavior).  I am going to take the behavior we have now, it is an improvement, even if not ideal.  We will also continue to try techniques that aren’t medicine.

The increase had me ready to enter the loony bin and probably poor D too. 

I am going to end this with a plea to you all.  California is proposing a 750 million dollar cut to DDS services, as a result of this they are trying to impose new guidelines for services that would violate our children’s rights under The Lanterman Act.  The DDS has posted a survey for parental feedback and of course the questions are just difficult enough to try and discourage us from answering. 

KTLP has posted responses to the questions as a guideline for parents, this is listed after the survey link below.  Please follow the link below, complete the survey and help us advocate for our babies. 

I spent 16 months fighting to get D into the regional center, I needed help paying for the very expensive ABA therapy that D needed, that is all I wanted from them as my insurance has covered most everything else (after some pushing on my part).   Thankfully he was finally qualified for services two months ago, but there is still a lot of red tape to navigate until he gets his ABA therapy, possibly costing us another precious few months.

That was 16 months he could have been getting ABA by a behaviorist….not mom, but because we couldn’t afford to hire someone and The Regional Cener screened us out (due to their ‘standards’) with no compassion, we lost that precious time. These new ‘standards’ that they are trying to impose on POS services will hurt the development of a lot of our children. 

Thank You 🙂

Here is the link for the survey,

http://www.dds.ca.gov/survey/

From the KTLP Website:

Statewide POS Standards will KILL the promise of The Lanterman Act. If you want to stop this, we suggest you answer the DDS Survey something like this:

Question #1: Suggested service standards about who should receive these services:
Answer: Those individuals whose Individual Program Plan (IPP) team has identified a need for these services, as described in The Lanterman Act Section 4646 (a) – (d).

Question #2: Suggested service standards about how often a specific service should be provided:
Answer: As often as the IPP team determines is necessary, as described in The Lanterman Act Section 4646.5 (a) (4).

Question #3: Suggested service standards about how to make sure the services provided are useful and effective:
Answer: Usefulness and effectiveness of services should be determined by the IPP Team at every IPP meeting, as described in The Lanterman Act Section 4646.5 (a) (6).

Question #4: Suggested service standards about the qualifications and performance of the person or organization that provides these services:
Answer: Services should be provided only by persons or organization that are properly vendorized as described in The Lanterman Act Section 4648 (a) (3) (A).

Question #5: Suggested service standards about the payment for these services:
Answer: The Lanterman Act, in Sections 4648 (a) (5) and 4690 requires the Director of the Department of Developmental Services to develop and maintain equitable processes for setting rates to assure that Regional Centers can secure high quality services for persons with developmental disabilities. The Director should comply with these laws.

Question #6: Suggested service standards about the responsibility of parents and consumers for these services, e.g., co-payment, time commitment, etc.
Answer: The State of California has accepted a responsibility for persons with developmental disabilities and an obligation to them which it must discharge. (The Lanterman Act Section 4501). The state does not ask parents and students for co-pays in California’s pubic schools and the same logic applies here.

Question #7: Suggested service standards about self-directed or self-determination options for these services:
This question cannot be answered until California has a clearly defined mechanism for implementing self-directed or self-determination options.

A Battle Won!!!

I have no time to blog right now, but had to share this!!

After a year and a half of fighting with the regional center to qualify Diego for services, they have finally done so! 

I am so thankful.

For each one of you that prayed or sent good thoughts, you are lifesavers. 

Ok, now back to clinic…seeing as I’m the only one here today.

UGH