RSS Feed

Encouraged

Posted on

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 :)
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 only thing….

Posted on

The only thing constant in life, is change. (Stephen Marley, “Now I Know”)

We are in the middle of some huge changes in our house, changes that make it hard just to keep my head above water. 

But change is needed, change signifies growth, no matter how hard it is on the soul.

Apparently God is much more confident than I, about the amount of strength I posess. 

Maybe after the major changes are said and done, I will be on here more. 

I need to be, as I need our community now more than ever. 

My brain has been so preoccupied with the many things going on in my life, that even the thought of writing a blog tipped the scales in favor of an emotional breakdown.

But the most pressing emotions have been processed, decisions have been made.

The most important thing is that the kids and I are coming out on top.  Our souls are a bit battered and bruised, but we are going to be ok.

We have one other and phenomenal friends and family.

Blessed is an understatement

The Writing Is On the Wall….=)

Posted on

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

 

 

 

 

Who Runs The World??

Posted on

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!!!!!!!!!!”

=)

Learning Every Day

Posted on

A lot of my time is spent trying to see things from Diego’s perspective. I LISTEN every time he has something to say because it gives me a glimpse into what life is like for him. Maybe then I will have a better idea of how to help ease some of his pain associated with being autistic in a neurotypical world.
I don’t want to change who my son is or have him think that he is less because he is an autistic person.
I want him to embrace his amazing mind and have confidence in who he is. I tell him everyday how lucky I am that I was chosen to be his mother. This has been and continues to be a life changing experience. Parenting Diego shares some similarities as raising my neurotypical son, Lyric. As their mother I teach them things that will make this world easier to navigate as they grow up. From basic activities of daily living to the more intricate things like friendships and relationships. But with Diego this process can be very different, because the way Diego sees things is different.
He has had to teach ME how to teach HIM.
When Diego does/says something that I think is out of the ordinary I will ask him why he did or said that. The way he describes things allows me to get his perspective on so many different things. Our discussions are always enlightening for me. I am fortunate that he is able to communicate these things to me, and when he doesn’t have the words to discuss, I respect that and make a note to ask another time.
When we talk about why he dislikes or likes a certain thing I take mental notes. These things help me get a glimpse into his mind. With this knowledge I am able to come up with ways to help him develop the core skills he may need to be successful in this neurotypical world.
I am raising my child to grow up and be an adult that will know how to advocate for himself, be confident in who he is and happy with the life he chooses.
My dream for both of my children are these things.
When I write about the hard times associated with autism, I am not looking to depict my son as somebody that is less than or is a burden, but I write to raise awareness of how hard it is for my autistic child to constantly have to accommodate to a neurotypical world. I write about the good times too, to raise awareness that autistic people have so much to give to this world.
I also write this blog because of The Tribe.
Raising a child with special needs is hard work, this blog allows me to connect with other parents raising children like mine.
When I am having a bad day I am able to go to my blogroll and find the blog entry of a mom having a similar day and then I don’t feel so lonely or if I post the guesome details about a hard day and voice that i am out of ideas, one of the tribe is to the rescue with amazing advice.
Some days support is the simple yet powerful ‘I get it’
Maybe it was wrong for me to say in my last post that I hate autism.
I don’t hate the brain difference, but I hate the struggles associated with it.
It is heartbreaking for me to watch my child lose it.
I get that it might be neccessary that he does so, but I need to figure out why it happened so that that whatever caused it it can be avoided or to teach Diego the tools to get through it a little easier the next time.
I can’t imagine that a meltdown is a pleasant experience, in fact I have asked Diego about them and he has assured me that they are not.
I have been meaning to write my thoughts on this forever, but needed a quiet hour so that I could get it across like I wanted to. It isn’t a coincidence that this comes on the tail of Autistics Speaking Day. I was incredibly moved by all of the blog entries I read. Each one has given me incredible insight. I think there are over one hundred different entries. TTPGTA posted this excellent round up from Mosaic of Minds
I am still learning….everyday I am learning.

Hope Is In Short Supply These Days

Posted on

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

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

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

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

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

Which was both a good and bad thing.

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

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

The situation just got worse….much worse 

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

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

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

I HAVE to let Cynthia try. 

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

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

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

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

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

Not

one

thing

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

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

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

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

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

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

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

Hope is in very short supply these days.

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

I hate autism, I absolutely despise it.

The First Two Days of Kinder at The Big School

Posted on

First Day at The Big School

My Facebook status update on Monday

“Text from Diego’s teacher about his day today
‘Shivon!!!! He did amazing!!!!! Made a friend and played soccer at recess!!!!’. Ummmmm my baby kicked ass today and today I am going to celebrate this victory and not worry about tomorrow. =)”

Diego’s first was more than I could have ever imagined. I would have been fine if he made it through the day without completely melting down. But my amazing little boy not only DID NOT melt down, but he played soccer at recess WITH OTHER KIDS and even kind of made a friend. He also did phenomenal at the after school program. I allowed myself to enjoy they accomplishment that day, and did not allow myself to worry about Day #2.

While Day #2 wasn’t as fantastic as Day #1, he still did not melt down. I asked him how recess went and he told me that he played soccer for a “little while” and then walked around gathering leaves because he needed “some time alone.”

My little old man.

He also had a hard time with the after school pep rally. He told me that his ear plugs were hard for him to put in by himself , but that he “made it through.” I will talk to the after school teacher about helping him with his ear plugs next time.

After school and homework have been a bit of a challenge as his threshold for everything is significantly lower. I assumed this would happen. I think it is hard for D keep it together all day at school and home is safe for him, which loosely translates in to tantrum city. I have been managing it ok, but I would be lying if I didn’t say it is exhausting.

I am stressed and tired…lol….not unlike any mother to special kids like ours.

I am meeting with the new school psych this afternoon to discuss Diego’s upcoming assessment. These damn assesments always make me nervous.

So I am trying to breathe and wait to worry until it is all said and done.

Ha! Wish me luck with that =)

Follow

Get every new post delivered to your Inbox.

Join 236 other followers