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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.

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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…

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.

When ‘They’ Just Don’t Get It and When ‘They’ Randomly Do.

This Thanksgiving will be spent with just our immediate family….those who live in our house, my sister and a couple of friends.  This is my first Thanksgiving like this and unfortunately has been surrounded by way too much drama.  For fear of making a bad situation worse, I won’t blog about the details.  Just know it really sucks when one of  the people closest  to you is so wrapped up in themselves and won’t get ‘it’.

The ‘it’ being referred to is autism.

The situation is heartbreaking.

But I am doing my best to throw on my happy face and resist the temptation to fix it. 

It just  isn’t my place to fix this situation…

Which is so difficult because I am a fixer to the core.

On top of family drama, I have to ‘share’ D with his dad this Thanksgiving  and if you have been reading my blog for a minute you know that situation can be pretty trying.

In the midst of all of this I am trying to breathe, not lose my holiday spirit, or my mind.

It will be ok.

It has to be.

Some great news!

Dino Dan’s real life came across my blog about Dino Dan (random right??) and Diego’s love affair with the show.  She told the real life Dan (Jason Spevack) about Diego and  ‘Dan’ is going to send D a letter and a picture. 

D may just completely lose his mind :). 

Poor woman she probably thought I was a looney tune when she read my reply…lol….I couldn’t stop thanking her.

I will be sure to have the camera ready when he opens his letter.

I had a parent-teacher conference with Diego’s teacher yesterday, he needs to work on all of the things I am already pretty aware of, fine motor, self-regulation, social skills, personal space, etc….bottom line here though is that Diego’s teacher is amazing.  She gets ‘it’ and I was very concerned that she wouldn’t based on our first meeting.  I am happy that I was wrong….very wrong. She told me that our daily emails that brainstorming ways to help Diego be successful in Kindergarten really help her.   After speaking with her yesterday it really seems like she has taken a personal involvement in helping Diego, thus enabling me to breathe when he is with her during the day.  I am so happy that we got this opportunity to ease Diego into an academic environment.  I think that when Diego goes to public school next year, that I will decide to have him repeat Kindergarten.  He will need it especially when you think about the fact that it will be a new school with new kids, and completely different from the place he is at now.   

Agh…decisions…decisions

In all chaos there is a cosmos, in all disorder a secret order. ~Jung~

“Doesn’t she understand that I cannot make her potato stop shaking?!?”

This was recently said by a resident that I work with about an autistic patient that was being seen in our clinic accompanied by his mother. 

My heart broke, stomach nauseous, and my body boiled from the anger. 

I cried when I got home. 

He walked away before I could respond and right now I find myself looking for the appropriate words to address his ignorance. 

Because I have to.

I am so angry and hurt about his horribly unprofessional and cruel comment.  In my experience with him, he has always been very professional, so it really came as a surprise.  I understand that as a training hospital we are to teach these residents how to do everything from managing time to compassion.  I am just not sure that anything I say right now will be effective , it will only be fueled by anger. 

We saw the neurologist on Weds and she changed D to Risperdal.  I knew she would, and had prepared myself accordingly.  We discussed D’s MRI and there are still a lot of variables.  One of which is that it is showing a dilated peri vascular space which is further impairing D’s visual motor/spatial skills, that was about all that she would speculate.  She is going to take it to a case conference with a pediatric Neuro Radiologist, and see what he says.  If the Neuro Radiologist thinks it is more than a dilated peri vascular space then we will have to obtain an MR Angio to look at the blood vessels in Diego’s brain.  She said that it is nothing acute so that is good, but so many questions and possibilities still linger…not good for my anxiety level at all.  I am going to wait until after the wedding next Saturday to start the Risperdal, as the last I need the day of my wedding is an even more disregulated Diego.  My sister, who is phenomenal with him, is assigned to him the day of the wedding.  I am so lucky that she ‘gets’ him 🙂

The regional center could no longer screen me out and I have an orientation appointment for Nov 18th, after which will be the eval.  The case manager at the Regional Center has made it quite clear that if the assessment shows Asperger’s we are screwed.  Forcing me to play ‘the game’ (which I will not explain, but some you know what it is)…and that  is fine.  I think it is ridiculous, but hell, it is what it is. 

We did have a breakthrough in what has been a cloud of disregulation and chaos.

getting ready for bed

D: “Mom, I need a snack.”

Mom: “But D, you just had one aren’t you full…”

D: “Nooooo my tummy doesn’t want it, my mouth does.  It wants to chew.”

Hello sensory need, and he recognized it!!

D has quite a fixation with bubblegum and it really seems to regulate him. 

So I gave him a piece of gum to chew for 15 minutes and he was good!! 

YAY!!!

When things like this happen, I feel less like a hamster spinning my wheel and more like we are getting somewhere.  It was such a great feeling,  and I can only hope that as time passes the episodes become more frequent.

It’s “official” I am not crazy….

Well I still  probably have some crazy tendencies 🙂 ….but no one can tell me that I have ANY delusions when it comes to what is affecting my son.

We saw the neuropsych yesterday.

The neuropsych that told me, a year ago, that she really didn’t think that D was on the spectrum.

The neuropsych who, about a month ago, finally LISTENED to what I had to say and READ what I brought from our care team.

Her assessment was different this time, more attentive and very thorough.

 We waited about 30 minutes  for her to compile all of her numbers into a computer program,once this was complete she looked at me and said, “well this shows what you knew before I did…Diego has an Autism Spectrum Disorder.”

She said that the discrepancy between his academic functioning and his social/emotional functioning was huge, and that she can’t believe that she missed it.  The ADOS picked it up and it also helped that his teacher accurately filled out her form.  As we discussed various things I found that the  neuropsych backtracked quite a bit, and I kind of felt bad for her. 

Kind of.

She told me that I was getting Diego a majority of the services that he needed and that there wasn’t much that she could reccomend.  She also said that I should “pat myself on the back”  because I kept pushing for therapies despite the lack of a neuropsych diagnosis and that she was “very happy” that I followed up with her.  She also mentioned that watching Diego’s brain work really fascinated her. 

So here we are.

We finally have a diagnosis from a neuropsych.

I really didn’t think it would affect me much and I am surprised at how much it has.  I think that since I didn’t have the official diagnosis from standarized testing that it allowed me to have this silly little window of doubt. 

You know, that maybe (at 3am when I was up thinking about things) Diego wasn’t really on the spectrum. I knew he was, but denial can run deep and hide in tiny crevices. 

So a bit of a reality check finds me sad today.

On the positive side of this , the neuropsych eval will help me get D autism services in the public school system next year and the Regional Center will not be able to screen us out.  D also has his MRI next Tuesday to rule out Agenesis of the Corpus Callosum, they are putting him under general anesthesia, and I’m pretty nervous about that. 

As far as school goes, Diego is doing a little bit better, although at his OT appointment on Tuesday his OT said she ahs never seen him so out of sorts. She gave me some ideas for home and I will find out if they work in the coming weeks.  He was out of school on Tuesday and Wednesday for his various appointments, so tonight should be interesting. 

It has been one hell of a week and just when I think there is a “break” on the horizon, there isn’t.  I’m not sure there will ever be, some days may be easier than others, but this is my “normal”…..and all I can do is work on accepting it 🙂

*pic credit http://images2.layoutsparks.com/1/137740/crazy-turtle-cartoon-comic.gif *

Changes

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

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!!