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Encouraged

diego

This week has been tough.
Work has been frantic, busy, pure madness.
The Christmas season always adds more to my already full plate (like it does for so many)
45 minute tantrums.
D
not
Me.
I was close though.

I know that things will get easier, and then they will get harder, and then easier.
This is my life.
Most of the time I am able to find a balance and not go completely nuts.

What is awesome though, is that when I begin to feel overwhelmed, like I can’t go on another minute, God and D have this amazing way of giving me the nudge I need to keep going.

Last Saturday was a busy day, D had his 4 hour social group, which leaves him pretty tired.
You can actually see the exhaustion on his face.
Then he came with me to meet the person that will be caring for him over Christmas Break.
That story is for a different post.
I really hope I write it. *sigh*
Then we had a playdate with my new friend C and her daughter Z.

I knew I was pushing it by adding the playdate, but sometimes I get this feeling that I should gently challenge D.
Usually when I follow that feeling he shows off ūüôā
So D and I got to the park and for about 15 minutes it was just the two of us.
We brought his soccer and bouncing ball and played kick back most of the time.
Occasionally he would look back at the packed playground. I know he wanted to play, but his anxiety was high.
Whenever he looked, I asked him if he wanted to go over there.
Each time he said “No.”
Then I suggested that we go to the tree by the playground.
Still “No.”
We went back and forth a few times and after what seemed like careful contemplation he decided to go to the tree.
YES!!
Like I said I gently nudge,
not push.
He was drawing in the sand with a stick when C and Z showed up.
C and I gently prompted both of the children to say “Hi” to each other.
Despite the slow start they eventually started to play kick back together.
While playing Z and D hit heads.
Z was not phased by it much, but D was pretty upset.
I suspect the tears were less from the head bump and more from exhaustion.
Applying social skills is hard work.
Since D’s diagnosis I try to always mindful of my social skills, these skills that for me, are seemingly effortless, are a lot of work when I actual pay attention to doing them.
While I was hugging D, C walked over and asked me if it was ok if Z gave D a hug
Graciously I said he would love a hug.
Z came up and gave him the sweetest hug.
I could see D’s demeanor change after he got the hug from Z.
I knew he trusted her when she wanted to go to the playground and he went with her.
Z was gentle and patient as she included D in her play with the other kids on the playground.
Pretty soon D was using all of those social skills he has been working on 8 hours a week for the past 6 months.
He was hesitant yet confident as he followed Z’s lead.
Diego was playing WITH other kids, his age, and he was pretty saavvy.
After C walked over to tell the kids that we would be leaving in 5 minutes she came and excitedly told me that D was verbally participating in play as well.
She ‘gets’ it.
Z is a survivor of AML.
http://www.cancer.gov/cancertopics/pdq/treatment/childAML/HealthProfessional/page1

I am not likening Cancer to Autism.
But a mother’s pain is unifying.

Needless to say our play date was a hit and ended with a big hug and the promise of an UNO game soon.
Z is such a beautiful and good soul.

Moments like that, mothers like Colette, and beautiful little girls like Z encourage me to keep going.

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?? ūüôā

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 ūüôā ).¬† 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.¬† ūüôā

Empathy

Last night everything was back to normal, well as normal as things have been these days. 

I was sitting on the couch, reading the program from our nephew’s funeral, unfortunately¬†I couldn’t attend and was seeking some sort of connection.¬† Everything around me faded into the background as I looked at the picture of Johnathan’s beautiful¬†18-year-old¬†face, the beautiful face that was shot twice.¬† As type this I still can’t believe it has happened.¬† Diego brought me out of my trance by asking me “why my eyes were sweating.”

The following exchange ensued.

Me: ” Well Diego mommy is crying because she is sad.”

D: “Why are you sad mommy?”

(Did you all catch the WH question??¬† Ok I thought so ūüôā )

Me:¬† “D mommy is sad because our nephew passed away”

D: ” Passed away??”

Me: ” He¬†died baby” *crying again*

D: ” How??”

It was obviously not appropriate to break down how Johnathan was shot dead in front of his grandmother’s house.¬† I was scrambling, but finally came up with…

Me:¬† “D he was hurt very bad, but he is ok now, he is in heaven with God smiling down on us.”

I’m not even sure how much I believe that statement as my faith continues to take a nose dive, but I wanted to reassure D.

D: “Oh…Mommy I am a little bit sad too.”

Me:¬†” Why honey?”

D: ” Because you are sad.”

Diego was empathetic, not only was he empathetic but he asked questions and held the topic of conversation (a very emotional conversation).

We have had bursts of progress, but nothing this major. 

I looked at Rickey¬†and mouthed “did you hear that?!” ¬†he just smiled and nodded.¬† I explained to Diego that it was normal to feel sad when someone was sad and then he was off to tackle his brother

We NEEDED this so bad. 

Japan, Libya, 2,000 laid of district employees (880 of them teachers), cuts to the regional centers, gas prices through the roof, our nephew’s murder, Rickey’s mother (one of the most amazing people I know) is slowly entering the final stage of her life.

It is all so damn heavy.

But in the midst of all of that, there was hope last night.

I am thankful for that.

On a different note the NFAR Race For Autism is this Saturday and if you feel inclined to do so please donate to the cause.¬† The link is below ūüôā

Go Diego Go

“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 ūüôā ) 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 ūüôā

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.

My Own ‘Special’ Groundhog Day

Remember that movie “Groundhog Day” starring Bill Murray?

I was up late one night¬†over the weekend and I came to the conclusion that my life goes on cyclically…..

Like Bill in Groundhog Day.

Follow me.

This is going somewhere.

I promise.

I go on about the things that happen in my life as if they were the norm.¬†¬†I drive D to various appointments all week, make and use¬†visual schedules, implement sensory diet while trying to keep it interesting (read The Out of Sync Child), practice Diego’s fine and gross motor exercises with him , prompting, social skills practice, you name it we are doing it at some point…these things along with all other things that encompass¬† mom, wife, and employee are the norm for me.

Sure it is a lot, but it is just how we get down in our house ūüôā

It is typical for me to play phone/ email tag with at least 2 member of D’s team weekly.¬†

Typical to spend many nights….awake….thinking…..worrying…..crying.¬†

Typical to be stretched very thin and still feel like I haven’t done enough.¬†

Like there is always something more.

Something I could do better.

Anyway these days pass almost effortlessly for¬†my family (and I’m assuming most of¬†you that are reading this)¬†as we have worked out a rhythm¬†with our nutso¬†schedule.

But…

every so often?

SMACK!!!!

It dawns on me that the way we live isnt typical or very easy for that matter.

Other families have traded our therapies therapy for sports or dance classes, can spontaneously take their child anywhere without thinking about how it sounds, looks, or smells before even really fully entertaining the idea, or may overlook the¬† little things like “please’ and ‘thank you’ coming out of a 6 year old’s mouth.

I mean why should that be significant to the parent of a typical six year-old child?

I didn’t think anything of it when Lyric spontaneously used his manners at 2.¬†

It was the way it should be.

Ha!

The way things should be??

Silly naive girl..

Fast forward to today, we¬†are going on 6 and still not getting a ‘please’ or ‘thank you’ unless he is prompted….many times.

I don’t write this with any animosity toward the parents of typical children, so I hope that it doesn’t come off that way.

But I would be a big fat liar if I didn’t blog about the reality of my life and of parents that are ¬†in the same boat as I am.

My child has autism.

MY

CHILD

HAS

AUTISM

We are the 1-110 statistic.

Holy

Shit.

When this dose of reality hits me, I am taken right back to the first day I really knew that D had autism and then I experience every single thing I felt that day all over again.

the

despair

shock

sadness

and

the suffocating  fear

have to be dealt with all over again.

Like Bill Murray in Groundhog Day, I try to meet these difficult days with a different approach each time, hoping that I have finally found a way not to let the realization of our autism diagnosis ruin me (as it threatens to do each time this happens).

As time passes some things are so much easier and I see how far our family has come.

But I just can’t seem to get out of this cycle.¬†

I can’t stop experiencing my own ‘special’ type of groundhog day

I wonder if it will stop?

Am I still in some sort of denial about D’s autism diagnosis?

I have spent so much time this past year, trying to get people to listen to me, to help me help¬†Diego, that I don’t think that I have taken a lot of time to entirely process it all within myself.¬†

Maybe it is really too much for any of us to process at one time…maybe someone bigger than me knows that I need these lapses of full reality.

*sigh*

I am sorry if this sounds bleak, depressing, or anything along those lines, but I remember a year ago that I promised myself that I would be candid and true to myself while writing this blog. 

So that is what I’m doing ūüôā

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

Lesson Learned

Dueb to less than stellar (this is the understatement of the year)  experiences growing up  I have always been very skeptical of people and their intentions. 

I just never defaulted to the ‘people are generally good’ thought process.

It is sad…

I know…

but

as the years have passed I have gotten a little bit better.

Especially this past year.

I have ‘met’ some pretty amazing women that are just innately good people.

Beth has been one of them.

So the¬†story of Nik’s iPad goes like so…..

Beth posted a super adorable pic of Nik using his borrowed iPad on Facebook sometime last week and the gears in my head started to turn. After a week of madness here at home, I decided to put my plan into action

I emailed Jess on Friday and asked her if she thought Beth would be ok with us trying to raise money to get Nik an iPad of his own. 

Then Jess emailed around and got a great idea from Shannon for fundraising. 

ChipIn.com.

I emailed Beth and asked her if it would be ok with her, if I plastered Nik and his story all over the place to raise some money for an iPad.

She agreed.

Monday it was on!!

I was sick and at home, so I had plenty of time to promote away.

Then

other people

donated

and

promoted.

Beth would send me updates on what was coming in because the chipin widget was wacky and as each email came in with a higher dollar amount, my hope just increased.

I thought ‘Holy sh*t!! We really might do this!!’

We raised 850 dollars in less than 2 days.

I am still reeling from the response to help Nik find a way to kick autism’s ass.

In fact people are still emailing me to ask if they can still donate for apps and accessories. (which you can, see the blog entry below)

I also learned one hell of a lesson….

that

maybe

just maybe

not all people are shady, evil monsters…

You all are amazing.

Thank you so much