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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…

IMFAR Part 2

Once Alex was done interviewing , we walked back to grab some coffee.  As we walked around this part of the conference, I felt like I was in Disneyland.  I met a man that invented a vest that works similarly to Temple Grandin’s Hug Machine, I came across fMRI’s and  fancy EEG’s, but what stood out most to me was the level of comfort to just be.  This conference was filled with people who ‘got it’ whether on the spectrum or not.  It was so beautiful to watch, and I couldn’t help but to fantasize about a world like that.  A world that doesn’t notice the difference but does notice all of the amazing things inside the person.  Speaking of amazing things, back to the story. 

Alex and Noah needed to edit some video and after Susan, Adam and I found some food we headed over to the video room to join them.  Susan and I sat down and talked while the guys were intently focused on editing.  After a while I walked over and checked out some of the videos and couldn’t help but gush about how professional it all was, especially on the “G-string budget”

Did I mention that Alex has a fantastic sense of humor?!?!

He does.

All of the guys did.

It was getting later in the morning and I had to get home, but REALLY didn’t want to leave.  I gave myself another hour and I am glad I did. Susan and I met a woman with four children (one or more on the spectrum) getting her doctorate.  I have no clue how she is managing it, but she is and I think that it is fantastic.  I met a young man (in his teens)  who had won a trip to the conference and he was absolutely charming.  I also met a wonderful woman from Autism Speaks, please forgive me for not knowing everyone’s name.  I was so doped up on cold medicine that morning that I am surprised I remember half of what happened. (a week later my cold turned into pneumonia…blah)  Then the next thing I knew John Elder Robison walked in.

Seriously!!! 

He and Alex discussed the conference and what exactly Alex had gotten on video that morning.  One of my favorite parts, was when John told Alex, Adam and Noah how proud he was of them. 

I just wanted to hug them all!

But I restrained myself….LOL

I did watch John give the guys this amazing lesson on microphone frequencies and how fast sound traveled.  It was amazing to watch all of their brilliant minds at work. 

Simply amazing. 

I did everything I could not to cry as I thought about all of the challenges associated with autism that our children face that can sometimes cloud how incredible their minds are.  But I was also hopeful watching the four of them working together (some on the spectrum and some not.)  It was a great dynamic to witness. I did get a chance to talk to John and I thanked him for writing “Look Me In The Eye” and also explained that it was my first peek into what Diego’s world might look like.  He was fantastic about it as I’m sure that I was talking way too fast 🙂

Susan and I spent some more time talking, she is doing amazing things for people on the spectrum transitioning out of high school and into college.  When it was time for me to leave, I was bursting with love and hope.  I got to see and hear that the hard times do get better. 

The biggest thing that stood out to me was that I felt like I was with “my people”.  I never had to explain what the acronyms I was using meant, or give my quick  break down on autism.

Everyone there just knew.  It was great!

I am so thankful to Susan, Alex, Adam, Noah, John, and every other person I met for such a life changing experience.

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 🙂 )

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 🙂

Go Diego Go

“You can’t wring your hands and roll up your sleeves at the same time.”~P. Schroeder

Overwhelmed would be an understatement, but the closest word to describe the past few weeks. 

The details of everything would bore anyone, just because it would be too damn long to read.  But I need to get at least part of it out, so here is the condensed version.

In addition to running an entire clinic, with minimal help (see staff shortage and the hospital’s tragically long  hiring process), Diego has had me in the ER and doctors offices a lot more than we typically are.  In he past D has had some abnormal test findings for his brain and DNA, but typically we don’t visit the doctor ‘doctor’ this much.   

The abnormal brain finding shows that the part of his brain responsible for his visual motor skills  is being pressed against by two dilated perivascular spaces, so he will have to work harder in an area where he already has difficulty due to his autism. 

His DNA shows  a balanced translocation and chromosome deletions that currently have ‘undetermined clinical significance’ (aka waiting on research to catch up) and now we can add a benign abnormal heart rhythm with possible premature atrial contractions or the benign abnormal heat rhythm with panic attacks.  The brain and chromosomes are old news for us as it has been a few months.  The heart is new and is what has kept me running around (even more so than usual) like a chicken with her head cut off.  We are currently waiting to see the cardiologist to hopefully give him a clean bill of health, other than the arrhythmia.  While I am hopeful that what is going on has nothing to do with his heart, it breaks mine to think that my baby at the age of 5, is having panic attacks. 

Diego is verbal, but he still has a very hard time with his expressive (and pragmatic) language.  Anyone that has experienced an irregular heart rate can attest to the fact that it causes one to be more aware of what their heart is doing and usually causes alarm, even if one already knows that it is due to caffeine, etc…

But I think that when it happens to Diego in addition to the usual things that assault his senses, it is all too much and ends in a panic attack :(. 

I am almost positive this isn’t a cardiac issue, Diego’s anxiety is constantly through the roof.  If it isn’t a cardiac issue and is an anxiety issue, I am sure someone is going to hint to an anti anxiety med for him.  To possibly avoid any new medications, I am going to work with him on new relaxation techniques and how to apply them when his heart rhythm changes.  I will still obviously work on recognizing and expressing the anxiety, but the heart rhythm is tangible and my little concrete thinker will hopefully apply the relaxation techniques that I teach him are “for when his heart acts funny”.  I really don’t want him on anymore meds. 

Behavior has also been an issue, we were tweaking his Risperdal dose (not causing the heart issues I checked 🙂 ) and his beahvior was just escalating.  After emailing Beth and Kim (Thank you both for being amazing) and hearing about their medication experiences it was all too obvious that I needed to take him back down. 

So I did. 

I was  increasing it on our Neuro recommendation to hopefully decrease the frequency of meltdowns, especially since it had already provided some slightly positive results with the intensity of his meltdowns (aka his self injurious behavior).  I am going to take the behavior we have now, it is an improvement, even if not ideal.  We will also continue to try techniques that aren’t medicine.

The increase had me ready to enter the loony bin and probably poor D too. 

I am going to end this with a plea to you all.  California is proposing a 750 million dollar cut to DDS services, as a result of this they are trying to impose new guidelines for services that would violate our children’s rights under The Lanterman Act.  The DDS has posted a survey for parental feedback and of course the questions are just difficult enough to try and discourage us from answering. 

KTLP has posted responses to the questions as a guideline for parents, this is listed after the survey link below.  Please follow the link below, complete the survey and help us advocate for our babies. 

I spent 16 months fighting to get D into the regional center, I needed help paying for the very expensive ABA therapy that D needed, that is all I wanted from them as my insurance has covered most everything else (after some pushing on my part).   Thankfully he was finally qualified for services two months ago, but there is still a lot of red tape to navigate until he gets his ABA therapy, possibly costing us another precious few months.

That was 16 months he could have been getting ABA by a behaviorist….not mom, but because we couldn’t afford to hire someone and The Regional Cener screened us out (due to their ‘standards’) with no compassion, we lost that precious time. These new ‘standards’ that they are trying to impose on POS services will hurt the development of a lot of our children. 

Thank You 🙂

Here is the link for the survey,

http://www.dds.ca.gov/survey/

From the KTLP Website:

Statewide POS Standards will KILL the promise of The Lanterman Act. If you want to stop this, we suggest you answer the DDS Survey something like this:

Question #1: Suggested service standards about who should receive these services:
Answer: Those individuals whose Individual Program Plan (IPP) team has identified a need for these services, as described in The Lanterman Act Section 4646 (a) – (d).

Question #2: Suggested service standards about how often a specific service should be provided:
Answer: As often as the IPP team determines is necessary, as described in The Lanterman Act Section 4646.5 (a) (4).

Question #3: Suggested service standards about how to make sure the services provided are useful and effective:
Answer: Usefulness and effectiveness of services should be determined by the IPP Team at every IPP meeting, as described in The Lanterman Act Section 4646.5 (a) (6).

Question #4: Suggested service standards about the qualifications and performance of the person or organization that provides these services:
Answer: Services should be provided only by persons or organization that are properly vendorized as described in The Lanterman Act Section 4648 (a) (3) (A).

Question #5: Suggested service standards about the payment for these services:
Answer: The Lanterman Act, in Sections 4648 (a) (5) and 4690 requires the Director of the Department of Developmental Services to develop and maintain equitable processes for setting rates to assure that Regional Centers can secure high quality services for persons with developmental disabilities. The Director should comply with these laws.

Question #6: Suggested service standards about the responsibility of parents and consumers for these services, e.g., co-payment, time commitment, etc.
Answer: The State of California has accepted a responsibility for persons with developmental disabilities and an obligation to them which it must discharge. (The Lanterman Act Section 4501). The state does not ask parents and students for co-pays in California’s pubic schools and the same logic applies here.

Question #7: Suggested service standards about self-directed or self-determination options for these services:
This question cannot be answered until California has a clearly defined mechanism for implementing self-directed or self-determination options.

It Shouldn’t Be This Hard

7:45pm rolled around earlier this evening and found me at home with my stomach in knots. 

D had a rough day today.  In fact today was one of the worst days we have had in a while. 

EVERYTHING required ten times more effort than it should have. Diego’s frustration threshold was the lowest that I have seen it since he started the Risperdal. 

When he has hard days like today, in addition to the major lack of impulse control, he walks around with a pained expression on his face and his language is out the door.  When I try to talk to him, his replies are brief…fragmented…or he will start to ramble at a frantic pace about dinosaurs, his guinea pig Chum Chum, or the dog he has at his father’s house…Hazel. 

So my plan was to be as cheerful as I could when I announced that it was time for bed. As I walked up to him he threw himself on the ground and yelled “NO BED!”. I had hoped that the timer would help a bit, but it hadn’t. 

I was in for a long one tonight.   

I ignored D’s yelling and laid out his PJ’s and his pull-up so that they were easier for him to put on.  Once he saw them laid out his immediate reponse was “can’t do it.”  I tried to encouraged him, I told  him that he was such a big boy, I told him that he was a pro at putting his pajamas on, but nothing worked.  His anxiety was through the roof and he needed to control something.  Part of me just wanted to dress him for bed to avoid the meltdown,  but I knew that I couldn’t do that. 

Diego knows how to put his PJ’s on and I would be rewarding bad behavior if I had done it for him. 

It is my job to teach him that disruptive behavior isn’t ok.

So I had to hold my ground. 

Unfortunately this gave me the pleasure of scrambling for ways to motivate him to get them on. 

He haphazardly tried and would cry out “my hands can’t do it!!!”

I cheated a little bit and helped him here and there. My logic was that maybe if I gave him a little control that  it would calm him enough to put the shirt on by himself.  Finally he was ready, and then he looked at me and said ‘snack’

I don’t think that I have mentioned Diego’s obsession with snack food on here yet.  Getting him to eat a real meal is virtually impossible.  Initially I thought it was the Risperdal causing an increased appetite, but when I took a minute to think about it, D’s snack obsession was budding  prior to the Risperdal.  To manage the obsession, we set a number of snacks that he can have before and after meals.  I know it sounds drastic, but I make sure that he is getting enough to eat, and have found that it is  the only way he will stop asking for a ‘snack’ every 5 minutes.

I’m not exaggerating. 

Every 5 minutes.

Tonight I told him that he could have 3 snacks before bed. The amount varies based on how much he ate for at meal time, if he barely eats then we increase the number of snacks. 

He had all 3 snacks.

When I reminded him about this, he lost it.  I caved a bit and offered a few animal crackers, but he didn ‘t want those, he wanted a fruit leather. 

We were out. 

Of course.

When I told him this he started crying louder.  I offered the animal crackers again but he wasn’t having it.  At this point it was obvious that nothing was going to make things better and I walked him to his bedroom.  I let go of his hand and went to turn his blanket down and that’s when he started smacking and punching himself in the face.  I held his hands down  so that he wouldn’t hurt himself and ‘ignored’ the rest of the tantrum.  After a few minutes he stopped trying to hit himself and calmed enough for me to kiss him goodnight.  Once I left his room and sat on the couch,  I allowed my body and mind to relax. Nights like this drain every bit of emotional energy I have.  They leave me very tired and so sad.  About ten minutes later the crying started again, I let it go until I heard him smack himself.  When I walked into his bedroom he was banging  his knee into his nose and eye, he told me he wanted to see his blood. I was at the point where I didn’t give a shit about rewarding bad behavior, I just wanted him to stop.  I crawled into bed next him and gave him some deep pressure input by wrapping his blanket as tight as I could around his body.  Eventually this calmed him enough for me to cuddle next to him.  He kept crying and saying that he ‘didn’t want to hurt himself but that he couldn’t make his brain stop.’ 

It broke my heart to hear him say this.

I didn’t say anything to his comment, I mean what am I supposed to reply with in that emotional moment?  I think that I will address it with his therapist and see if she recommends anything. 

Without  words I  kissed him on his forehead and let him rub my ears until he fell asleep.

There is no moral or real point to this entry tonight.

I just needed to get this out.

It shouldn’t be this hard, it just shouldn’t.