Encouraged

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….

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….=)

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!”

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??

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

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

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

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 =)

Do The Best You Can and Never Stop

Diego’s first day at the “Big School” is Monday. I have spent the months since our IEP meeting preparing him for Monday and have been in constant contact with our team from the school.
Last week we visited the school numerous times, and I can’t even begin to express how much everyone at that school is invested in Diego’s success.
So why can’t I get this knot out of my stomach??
I have come to expect these knots as the parent of a child with autism.
They….Just….Don’t….Go….Away..
His teacher this year is amazing and his private school teacher ended up getting hired at the “big School” and she has been such an amazing resource for everybody there. I have even prepared for Diego to have a 1:1 aide for the after school program if he needs it.
But I still feel like I am missing something, although I know I am not.
My ‘I’s are dotted and my ‘T’s are crossed.
My blog has been severely neglected and I miss it so much.
Things at home have taken precedence over everything, and it isn’t just D.
Lyric is a tween almost teen and is acting every bit of it, not to mention his absent father of ten years has come back in his life. Which in the long run is great, but makes everything so much more complicated. As Lyric’s mom I am doing everything I can to facilitate this relationship, no matter how hard it is for me.
He wants this and deserves it.
I did find out a couple of days ago that Lyric scored advanced on all of his standardized testing, which made me feel great.
Like I am achieving the balance of being his and D’s mom.
I love them both so very much
Diego’s father and I have been civil, which is amazing considering how bad things have been in the past between us. But he is still heavily in denial about D’s autism. He noticed D can’t ride a scooter and decided that it was my fault, because I don’t take him to the park enough
*sigh*
When I attempted to explain that the scooter issue was more due to his gross motor delay than a lack of park outings, he told me that there is nothing wrong with Diego. I told him that I agree that there is nothing “wrong” with our son, but that he does a have autism and that includes different kinds of delays. He disagreed with that as well.
So instead of attempting to convince him otherwise I just listened, thanked him for his opinion, and politely explained that I will keep listening to the experts with extensive knowledge about autism (which include myself).
Diego started ABA in July and I already see tiny signs of progress, we also switched meds and I believe that is helping as well. He has been having some issues with his eyes though and I am taking him to the opthamologist in a week. I hope it is just his allergies and nothing else.
My husband is grieving and it is a deep grief that seems to changing the core of who he is. I wish I could write about the implications of it all here, but he doesn’t do public and if he gets wind that i did, it will just make a very difficult situation so much worse.
So I won’t.
To say my plate is full wouldn’t even cover the magnitude of the things I am facing.
I don’t have much support right now, which makes everything just seem so much harder. The needs and wants of those close to me currently trump my own, and that is ok for my boys, but not the others.
Too bad they haven’t gotten that memo.
But I haven’t set any boundaries either…..it is hard to do that with people you love.
I did take a break for myself and went with a group of friends to Vegas for a weekend. It was interesting, as the last time Iwas in Vegas was ten years ago, but it really isn’t my bag. My sister kept both of the boys and I was so grateful because she is one of the few people I can leave them with and not have to worry for a second. She is amazing and I am blessed to have her.
I have started seeing a therapist, it has been a long time coming.
I will be 31 in a week or so and have promised myself that I will finish my nursing degree, even if I am an old lady when I finally finish.
I need to do it for myself.
I also think I need to make blogging more important than it has been.
It is my way of getting all of this out.
Expect a post about the first day of school soon and good luck to everyone on their first day back as well!

A Long Way To Go.

I forgot to buy Pull-Ups at Target….damn it…..of course I didn’t realize that until I was getting Diego ready for bed. I threw on my chanclas and glasses, grabbed my keys and headed to our local drug store to pay twice as much than I would have at Target, but thats a different rant.
Once I got to the drug store I was distracted by pretty nail polishes for a bit, then kicked myself in the ass for lagging (there was a certain young man unnerved by the disruption in his bedtime routine waiting at home getting increasingly annoyed by the minute). I grabbed the pull-ups then got in line to purchase my goods and leave, when I noticed that I didn’t know the cashier.
There hasn’t been a new hire at this store in a long time, anyway, as the new gentleman was ringing up my Pull-Ups a woman came in and asked the cashier if he would help her pick out “two sympathy cards.”
Visibly annoyed by the request, the new guy rolled his eyes and said “in a minute.”
Asshole
Why am I writing this blog about my drug store excursion??
Because the woman that was asking for assistance with choosing “two sympathy cards” had a significant developmental delay. It was obvious, before I could offer my assistance, the man behind me asked her if she needed to know where the cards were located in the store?
She said “yes, but I also need help picking them.”
The man fell silent.
Then the new cashier blurted out “SEE that’s a whole other story, isn’t it??”
While she stood right there.
I was livid, all I could see was my Diego having the courage to ask someone for help and being treated in such an inhumane way.
As he handed my change I asked the woman if I could help her and she politely accepted. While we walked over to the cards I asked her what the cards were for exactly?
One was for a friend that lost a sister and the other was for another friend who recently lost a brother.
What a wonderful sentiment right?!
We spent about five minutes reading cards and she chose two.
I asked her if she would like my help checking out to which she politely declined and thanked me for my help.
Turning so she wouldn’t see my tears I replied “my pleasure.”
When I got to the front of the store, the cashier turned to me, looking incredibly ashamed and said “thank you.”
I would like to tell you that I was the big person and responded in turn, but what I really did was muster up the dirtiest look I could and shot it to him in response.
It is shit like this that reminds me that we have a long way to go as a people.
A….very….long….way.
😦

Hello Old “Friend”

I have spent the last few weeks navigating the behavioral equivalent of a mine field, never knowing if the next move I make will start D’s ‘rumbling’, which is the pre cursor to the complete meltdowns he has been experiencing too many times a day to count.

We are three weeks in to a med change and holy shit has it been a nightmare.  When D started the Risperdal I was concerned about weight gain, but thought to give it a try because things with his behavior had become nearly unmanageable.  It worked, but D was eating non-stop.  I tried to power through it by giving him low-fat and healthy snacks but after a ten pound weight gain in two months I asked our neuro to switch it.   We also took D off of the Tenex as we couldn’t increase the dose because it made him too emotional (see random frequent bouts of crying) and the dose he was on was barley helping his focus.  We titrated the Risperdal and Tenex down and then the new med, Abilify, up slowly.

So it has been a long 3-4 weeks, I wrote that already..didn’t I?

The past few weeks have left my poor brain addled and my body using whatever quiet time it has to sleep and rest.  Aside from the mindless Tumblr browsing and posting, not much has been happening that requires too much thought.  The daily problem solving has taken some if not all available brain power.  Any autism parent reading this knows what I mean about the problem solving or ‘redirecting’ as the therapists like to call it.  It is an exhausting  feat when your child is having an autism low on the roller coaster ride.  Although I did manage to force myself out for the 4th of July and had a good time. 

There is a silver lining in that this past week D’s  tantrums  have decreased a bit and the behavioral interventionist came in.  She is very nice, but I swear that if one more of them asks me why D is getting ABA now, I might bite her/his head off.  I get it, he is 6 and should have started years ago.  Ask the bastards at The Regional Center why it took so damn  long.  I promise that if I had the money and could have paid out of pocket for it, that it would have been done 18 months ago when I knew Diego had autism. 

*sigh*

Sorry, I am sure they are just doing their jobs…but it is frustrating. 

On another note, I had almost made it past the “what did I do to cause D’s autism?” stage and then this hit:

Antidepressant use in pregnancy may raise autism risk 

I took Zoloft from week 11 until I gave birth to Diego.  When I asked about the safety of taking this med while pregnant, I was told that in the many years it has been used that no adverse reaction to the baby was documented.  I was told that the unborn children of depressed mothers had low birth weight and other complications. 

With my history of pre-term delivery I figured I should take the Zoloft since it seemed that “the benefit outweighed the risk.”

In my second trimester the doctor increased the dose.

I had recently been diagnosed with SVT and put on modified bed-rest, then at 24 weeks strict bed-rest for pre-term labor.

Strict bed-rest  consisted of going from my bed to the couch, if I didn’t do this they threatened to keep me in the hospital for the rest of my pregnancy.  Anyone who has been in the hospital for more than a week knows that would be hell on earth.   So the Zoloft seemed like a god send.  It erased most of my crying spells caused by being confined to my home 24/7 , relieved some of my anxiety about the possibility of an early delivery, and eased my stress about the disastrous relationship I was in. 

Now reading that article I feel selfish. 

I feel like I should have just powered through those things, as least while I was pregnant, without taking the Zoloft.

Then pop all the pills I needed to after he was born.

Maybe if I did it that way, Diego wouldn’t have autism.

Maybe if I had done it that way he wouldn’t have to struggle everyday like he does now.  Here lately screaming in frustration “I can’t take this anymore” or “Why won’t my brain listen to me!”

For the past four weeks I have been at a loss on how to help him. All I can offer when he screams like that is a hug and and “it’s gonna be ok”.

But will it? 😦 

My heart breaks for him.

So whether or not the study is as concrete as I would like it to be, it only takes a little science to rattle me….apparently.

Like an old familiar enemy, Guilt creeps up again.

I kinda don’t need that right now…