RSS Feed

Tag Archives: love

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

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.

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

Holiday Spirit

There is so much going on with school that I need to  blog about, and will later.  But in the interest of preserving my sanity today, I am writing about our holiday season so far.

Enjoy ūüôā

I made spaghetti with a different sauce the other night.

I should have known better.

See noodle debacle here

Me: “Papa why aren’t you eating your spaghetti?”

D: “I don’t like it….”

*thinking*

Seriously, Mr. ‘ I eat everything in sight ,since I started the Risperdal’??

Me: ” Are you sure that you don’t want to try another bite?”

D: ” It tastes like trash, yucky yucky trash”

Me:” Oh….ok…”(speechless and trying not to laugh)

My girlfriend looked at me incredulously, like ‘did he really just tell you that your food tastes like trash??’

When we were out of earshot, I explained to her that I switched sauces and apparently chunky Ragu tastes like trash. 

I love Diego’s honesty.

Her and I were¬†trying to get out of the house to get some Christmas shopping done, so Rickey¬†ever so arrogantly proclaimed “I got this” and told me to get a move on.¬†

Well alright then.

Rickey thinks that I am a little too accommodating with Diego, I actually think that I am just more in tune.

The reality is, that Rickey is an undercover softyand he thinks that I have no idea that he is the Stay Puff Marshmallow Man.

Ha!

When I got home with the tree, Diego proudly declared that he had the GOOD spaghetti with meatballs in it.

Rickey gave him spaghettios.

See?!

He is pure mush ūüôā

In an attempt ¬†to take advantage of Diego’s newfound holiday spirit, we decorated our Christmas tree on Saturday.¬†I had the christmas carols playing and D had his football Christmas¬†hat on.¬†

It really¬†felt like Christmas, errr well kind of….80 degree weather screams beach…

But Christmas?? 

Not so much.

I know some of you would like to choke me as you are being enveloped in snow at the moment, but it is really weird to celebrate the holidays when it is so warm outside.

Dang, can’t we just have our typical San Diego ¬†‘chilly’ 60 degree December weather?! ūüôā

Anyway, regardless of the temperature Diego encompassed the holiday spirit…we had a lot of fun and I am looking forward to experiencing more with him over the next two weeks.

I just want to squeeeeeeze him!!

After hearing about Diary of a Mom’s success with Santa, I think we may venture out and try it this year.¬†

Thanks for the encouragement Jess ūüôā

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

Time To Help

It is time for us as mothers, friends, and family to band together. 

One of our own needs our help. 

Many of you know Beth and Nik, if you don’t please visit her blog at http://maternalinstincts.wordpress.com/.¬†

¬†Beth is an amazing mother and friend, she has been instrumental in helping me keep my sanity¬†(along with a million other things)¬†the past year of my life.¬† Anyone that has received an autism diagnosis, knows how isolating it can be.¬† Beth¬†let me¬†know that I wasn’t alone.¬† Despite everything that is on her plate, she is always reaching out to help someone.¬†

Nik is an amazing little guy, super smart, funny, and cute as all get out!  No really he is way too cute!!  

Nik using his borrowed iPad

 

Nik is also pre-verbal and needs an iPad and we can help.  We have all read about the amazing Apple autism apps, not to mention that the iPad will, most importantly, help Nik communicate with those around him. 

Amazing right?

So

PLEASE

go here

http://niksipad.niksipad.chipin.com/niks-ipad

and

donate.

The amount doesn’t matter….just something….I know our community and I KNOW that we can do this!

Once you have donated please take that link and send it to EVERYONE you know.

Thank You

Shivon

Changes

First Day of Kindergarten. We will tackle a haircut next week ūüôā

I would have loved to start this entry saying that Kindergarten has been a smooth transitioning process, but I can’t.¬† It has been easier than¬†if Diego had started at the public school as we had originally planned, and his current teacher thinks he is doing great.

But at home?? 

Not so much.

In typical Aspie form, my amazing little boy¬† keeps it together the best he can at school and leaves the “best” behavior for home.

The  combination of  Kindergarten, 30 minute vs 2 hour naps in a child who maybe falls asleep by 11 then wakes at 6am, and some side effects of the Tenex, have left Diego a sad, self-injurious, tantrumming mess at home. 

Diego has been so sad, which is very unlike him.¬†¬†¬†Over the weekend he was sobbing, looked at me¬† and said “I don’t know why I am crying.”

Heartbreak much??

I have read that this happens to some kids while on Tenex, and along with having the depressed-ish mood, Diego has also been more out of it than normal. Rickey and I sat last night, compared notes, and have decided that we are going to email  his neuro to see if it is advisable to cut down the  half tablet he takes in the morning to a quarter or just wait a few weeks until Diego gets into a routine. 

There are just so many variables right now  that it is hard to figure out what is causing which behaviors.

On top of all that is going on, Diego’s father is pulling away.

Yup.

Rather than gathering all of the courage and tenacity needed to help his son, he has decided that it is best to phase himself out. 

The Sunday before last, his father came to get him without a car seat. 

I maintained my composure and asked if he intended to take Diego with out one and he said he was. 

Still maintaining¬†my composure and keeping the¬†“happy voice” I offered¬†him my¬† car seat.

To which he declined.

Then I offered to take D to his mother’s house for him, so that he would be safe.

To which he declined.

Then he decided to open his stupid mouth and say, right in front of Diego, “just keep him”.

I tried to keep it  light and jovial again offering both of the things listed above and then he said it again.

“Just keep him.”

I looked at him and said that Diego was really looking forward to being with him, but of course that didn’t matter.

Diego may have not picked up on it the first two times but as I removed him from his father’s car, I could see he got it the third time his asshole father said “just keep him”.

Diego looked at me when I put him in the car seat¬†and said “I want¬†to¬†go to grandma’s, you should have brought daddy a car seat”

His hurt was palpable.

I gave him a big hug,¬†and gently told him, “I¬†will take you to grandma’s¬†but it is ¬†NOT my responsibility to bring daddy a car seat,¬†it is your daddy’s responsibility to make sure that you are safe in his car.”

He wasn’t satisfied with this at first and we went around in a similar fashion for a few minutes, but eventually I found a way to validate his dissapointment and make him laugh.¬†

Once we got there, he was very excited to see his grandma and tia. 

Apparently his father decided to show up later on. 

This past Sunday I just took Diego directly to grandma’s as his father called me 15 minutes before he was supposed to pick¬† Diego up to tell me he wouldn’t be, because he was working….

Convenient

Diego’s father¬†has no understanding what a last minute¬†change can do to Diego’s temperament, in fact he has made it all too apparent that he doesn’t care to understand.¬†

I have now mastered the art of being vague when it comes to preparing Diego for Sunday afternoons.¬† I usually tell him that he is going to grandma’s and either mommy or daddy will take him.

Have I mentioned I can’t stand his father’s ignorant ass?!?!?

Lots of stuff….

Just

So

Much

P.S

We have moved the wedding to Sacramento last-minute. Rickey’s mother is sick and asking her to travel down here¬†is not the right thing to do.¬† So we are going up there, I am so grateful for the fantastic coordinator at the venue we found up there, but it has been major¬†work!!

Tenex and Kindergarten

*driving home from Lyric’s summer camp*

Diego: “Mooooom…..we must pray to the earth.”

Me: “Oh….really???”

Diego: “I prayed to earth when I was sleeping.¬† The earth spoke to me.”

Me: *maybe I am playing too much reggae around him..lol*

“It did? Well what did the earth say?”

Diego: “The earth told me I need ketchup AND ranch with my chicken nuggets.”

Me: “Oh…..”

Well Day 5 of the Tenex¬†and I think I may be¬†able to check off “personality¬†change” from my list of concerns.

So far so good. 

We had an issue of drowsiness for one day after starting the Tenex but he got over that.  On Friday I will add his morning dose, but even on just the evening dose there is improvement in his participation in circle time at school. 

Yesterday his¬†OT¬†and I both noted less anxiety as he ALWAYS asks what’s next and didn’t one ask at all during their¬†entire hour yesterday.¬† He also tolerated the¬†screaming by another child much better than usual.¬† Children crying/screaming is Diego’s kryptonite, he loses all motor planning, speech ,and starts to either stim¬†like crazy or get very very silly.¬† Yesterday his speech was definitely affected but he was still able to get the task done.¬†

Improvement?? 

Most definitely.

But the kicker was Monday in the waiting room of his social skills group.

Diego said “Hi” to another child in his group.

UNPROMPTED!!

Not even a minor prompt…

NOTHING!!

He simply LOOKED at the other boy and said “Hi, look at my snake book”

I cried

right there

in front of everybody and their mama

(literally…lol)

So maybe the medication that feels so incredibly unnatural to give him is working just enough to take the edge off and allow him to utilize some of the skills he has been taught consistently over the past year.

I am cautiously optimistic.

Kindergarten starts in a little over two weeks, and this will be the true test.  He will be completely prepared with sensory and visual support materials.  I bought them all as I prefer not to depend on the school for this. 

lol…control freak much?!?!?

Hopefully between the material support, the therapies, and the Tenex he will do well. 

Hopefully there will be no need for a personal aide, although¬†the look on D’s preschool teacher’s face when I told her that¬†he¬†would not have an aide mimicked what I have been feeling.

Panic.

D will be starting a school readiness social skills group this Saturday and we will be digging into his Kindergarten social story this weekend as well. 

The Transitional IEP meeting should be happening the week of August 23rd and then school starts on the 30th.

My anxiety is through the roof!!

Long Night

Sweet holy autism Batman!!

Last night Diego was the most deregulated, hyper, irritable that I have EVER seen him.  He was a stimming mess choosing to walk in circles while biting his hands, or jumping on everyone/everything in the house seeking sensory input.  Nonsense words took the place of the proper names of things.

No matter what I did nothing helped. 

At one point¬†he was sweating and red in the face because he had been running himself¬†silly, it was too cool here at 6 o’clock here¬†in San Diego for anyone to¬†be sweating.¬†¬†¬†¬†¬†His therapist¬†also noted that Diego was extremely out of sorts at their visit yesterday.¬†

But we made it.

Barely.

Sleep didn’t come for awhile and it wasn’t peaceful as he was tossing and turning all night.

*sigh* My monster ūüė¶

We are set¬†to start the Tenex¬†this weekend.¬† Diego’s father has of course refused to give him¬†any of the medication. I have worked it out with Diego’s aunt and she will give it¬†to¬†him at night¬†and I will have the school give it to him in the morning when Diego is with his father once a week.¬† I spent a good 30 minutes attempting to discuss the¬†specifics of the med, the people I spoke with regarding¬†its¬†safety and he wouldn’t¬†hear any of it.¬† He is just doing it to be difficult, as his argument is not medically based just bitter and angry.

In the future if this keeps up and I can’t find a way around it, we will be in court….again

I hate court.

As if autism weren’t hard enough, I have to continue to deal with him…blah

It is August which means school is starting on the 30th, and I have been trying to get everyone together for Diego’s¬†transitional IEP meeting and not let the anxiety about¬†Kindergarten show.¬†

But my stomach is in knots. 

I am not sleeping, and top of this it is time for D’s yearly pysch¬†eval with the woman he initially saw a year ago, whose report came up inconclusive.¬†

I am meeting with her August 13th and the eval isn’t being done until October.¬†

Should be interesting at best.

I have NEVER had a good experience with the neuropsych…EVER…but will come prepared ūüôā