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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.

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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

 

 

 

 

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

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¬†ūüôā

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. ūüôā

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 ūüôā

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!

Miss Kelly

Last night Diego had his Open House. 

Once we got home my Facebook status read:

“My baby stood up¬†in front of 50 parents, spoke 3 lines and made it through both songs. He and his wonderful teacher Ms Kelly are amazing! Never underestimate the power of a teacher that cares. I am forever grateful to her.”

Despite the sensory nightmare¬†that was last¬†night Diego managed to get through the entire evening with out melting down once, and he even participated in the performance.¬† He looked pained through a lot of it, but he got through like a champ.¬† The first thing Kelly said to me after they got off stage was “HE DID IT!!!”.¬†

I just cried and thanked her.

When I first met with Miss Kelly, I was pretty positive that she wasn’t going to be a good fit for Diego.¬† She came off¬† immature, slightly arrogant, and would cut me off before I was done with my sentences.¬† I would soon learn that I was very wrong.¬† I think she may have thought that I was crazy overbearing psycho mom.¬†

Maybe I am a little bit ūüôā

During the  first month of school Kelly and I hit a few bumps.  But after that first month, Miss Kelly fell in love with Diego (her words).   She knows how to manage Diego and the plethora of behaviors that he comes with.  I take comfort in knowing that Diego is ok when he is with her. 

Emails like this prove to me everyday that we are incredibly blessed to have her as his teacher:

Super day! Diego¬†had EXCELLENT restaurant manners and¬†was such a good kid : )Loved his share too…. only that little guy would find a way to bring sea animals and the world together ; ) Loved it!”

and

Great day Shivon! I can’t express how much I love that little guy and how his¬†silly little faces¬†and smiles get me through the day.¬†¬†Today I asked him if he would stay in Kindergarten forever and he gladly replied, “Sure!”

and

“D was a trooper today-¬†K let me know about his early pickup and I¬†forgot to remind R before I went to lunch.¬† My heart dropped when Diego already had on his green fieldtrip shirt and was¬†sleepily walking to use the restroom when I came back from my break.¬† LUCKILY, he wasn’t phased at all when I informed him that you were getting him early! Looks like our little man is adjusting better to change : )”

She is such a gift.

I thank her every time¬†I talk to her, because I feel like my simple words just aren’t adequate enough to convey the depth of my gratitude to her.¬† To prepare for next year she has even offered to accompany me to Diego’s IEP meeting.¬† I expressed to her that I didn’t want her to lose pay as she will be missing work to attend and she looked me square in the eye and said “I want to be there”.¬†

Once this school year ends I will miss having her as Diego’s teacher , but am happy knowing that we will always have her as our friend 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