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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.

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.

“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.

My Own ‘Special’ Groundhog Day

Remember that movie “Groundhog Day” starring Bill Murray?

I was up late one night over the weekend and I came to the conclusion that my life goes on cyclically…..

Like Bill in Groundhog Day.

Follow me.

This is going somewhere.

I promise.

I go on about the things that happen in my life as if they were the norm.  I drive D to various appointments all week, make and use visual schedules, implement sensory diet while trying to keep it interesting (read The Out of Sync Child), practice Diego’s fine and gross motor exercises with him , prompting, social skills practice, you name it we are doing it at some point…these things along with all other things that encompass  mom, wife, and employee are the norm for me.

Sure it is a lot, but it is just how we get down in our house 🙂

It is typical for me to play phone/ email tag with at least 2 member of D’s team weekly. 

Typical to spend many nights….awake….thinking…..worrying…..crying. 

Typical to be stretched very thin and still feel like I haven’t done enough. 

Like there is always something more.

Something I could do better.

Anyway these days pass almost effortlessly for my family (and I’m assuming most of you that are reading this) as we have worked out a rhythm with our nutso schedule.

But…

every so often?

SMACK!!!!

It dawns on me that the way we live isnt typical or very easy for that matter.

Other families have traded our therapies therapy for sports or dance classes, can spontaneously take their child anywhere without thinking about how it sounds, looks, or smells before even really fully entertaining the idea, or may overlook the  little things like “please’ and ‘thank you’ coming out of a 6 year old’s mouth.

I mean why should that be significant to the parent of a typical six year-old child?

I didn’t think anything of it when Lyric spontaneously used his manners at 2. 

It was the way it should be.

Ha!

The way things should be??

Silly naive girl..

Fast forward to today, we are going on 6 and still not getting a ‘please’ or ‘thank you’ unless he is prompted….many times.

I don’t write this with any animosity toward the parents of typical children, so I hope that it doesn’t come off that way.

But I would be a big fat liar if I didn’t blog about the reality of my life and of parents that are  in the same boat as I am.

My child has autism.

MY

CHILD

HAS

AUTISM

We are the 1-110 statistic.

Holy

Shit.

When this dose of reality hits me, I am taken right back to the first day I really knew that D had autism and then I experience every single thing I felt that day all over again.

the

despair

shock

sadness

and

the suffocating  fear

have to be dealt with all over again.

Like Bill Murray in Groundhog Day, I try to meet these difficult days with a different approach each time, hoping that I have finally found a way not to let the realization of our autism diagnosis ruin me (as it threatens to do each time this happens).

As time passes some things are so much easier and I see how far our family has come.

But I just can’t seem to get out of this cycle. 

I can’t stop experiencing my own ‘special’ type of groundhog day

I wonder if it will stop?

Am I still in some sort of denial about D’s autism diagnosis?

I have spent so much time this past year, trying to get people to listen to me, to help me help Diego, that I don’t think that I have taken a lot of time to entirely process it all within myself. 

Maybe it is really too much for any of us to process at one time…maybe someone bigger than me knows that I need these lapses of full reality.

*sigh*

I am sorry if this sounds bleak, depressing, or anything along those lines, but I remember a year ago that I promised myself that I would be candid and true to myself while writing this blog. 

So that is what I’m doing 🙂

A Battle Won!!!

I have no time to blog right now, but had to share this!!

After a year and a half of fighting with the regional center to qualify Diego for services, they have finally done so! 

I am so thankful.

For each one of you that prayed or sent good thoughts, you are lifesavers. 

Ok, now back to clinic…seeing as I’m the only one here today.

UGH

When it all gets to be a bit much…

I have written at least five blog entries in my head over the past two weeks.

Unfortunately none have made it here.

Christmas, bronchitis, school issues, insurance issues and regional center prep have taken up more time than they should.

Christmas went pretty well this year, since receiving our ASD diagnosis I have had to change the way I think Christmas should be.  I think it was either C’s mom or Roc’s mom that commented on a Thanksgiving blog that as parents of children on the spectrum we might have to make new and different traditions that fit OUR family.  So that is what I did this Christmas and it helped. 

A lot

Thanks 🙂

Bobby the Elf was a hit and really helped to bring ‘Santa’ to life for Diego. Lyric a.k.a Super Big Brother continues to amaze me, he is so dialed into Diego and has saved the day numerous times in the past two weeks.  When I get as sick as I was and can’t be all that I usually am to Diego, he acts out.  Mommy and Christmas break were really screwing with his routine and he let us know….frequently.  This time of year Rickey works so hard and is barely home, so he couldn’t be much help, but then Super Big Brother came to save the day.  Lyric saw I needed help and just stepped right in.  Lyric is guaranteed to get Diego out of any bad mood pre tantrum, and post tantrum he does a fantastic job making silly faces to help Diego forget. Lyric made bronchitis with muscle spasms and a fractured rib smack dab in the middle of the holiday season a bit easier for his mom. 

God bless him!

I made sure he knew how much I appreciated his 12 year old self coming to my rescue, and that is isn’t his responsibility to always step in when D is having a hard time. 

As for me, recovery is on the horizon.  I am looking forward to finishing this 5 day Prednisone taper and to my bones and muscles getting back to their normal recovered state.  In the midst of this I have had our regional center intake, the social worker really seemed like she was on our side and would make a good case to the Regional Center Board.  A school change may be on the horizon for Diego, as even being in the small class (8 kids total) isn’t helping him.  In fact he is falling far behind and needs a lot more help than he is getting.  I spoke with the school psych (Anthony) over at the charter school, and he was very receptive to my reports of D’s difficulties at the private school.  He asked why we didn’t go public and chose private, so I went over exactly why we chose that placement.  When I was finished he apologized for the evil vampire school psychologist and the experience we had.  I explained to him that I was glad that we found out this way, because although D is having significant problems in the small NT class, it would have been much worse if it was in a large mainstream class with new kids in a new environment.  Anthony said that he is going to visit Diego in his current placement and speak with the teacher, but that it sounds like D would benefit being in a public spec ed classroom and visiting a typical class.  Anthony was nothing but empathetic, understanding, and validating.  He doesn’t even really have to do this as  D is private he isn’t on Anthony’s case list.  But Anthony’s ‘special interest’ is autism and it shows.  If  for some reason I end up having any issues with the public school and getting Diego what he needs, I have a plan B.  I met with an AMAZING advocate and she really helped me figure out why I was having such a  difficult time wrapping my mind around the assessment that the vampire district did,the damn thing  contradicts itself every other line and is not based on any concrete data.  I won’t go into my dissapointment about the other advocate  we had :(.

*sigh*

So that is school.

I just got a letter from my mental health insurance company that after a year of Diego visiting his psych twice a week for a year that they will no longer cover this because she is an assistant and not licensed.  I am going to call today, submit my appeal and take it to the Dept of Managed Care if I have to.  In the interim the head psych where Diego is seen has offered for Diego to continue at no cost.  I will believe that when I see it.  But never the less the situation is rough, complicated, and trying.

and

I am tired of fighting.

very

very

tired.

It shouldn’t be this hard to help my baby.

I got some of the wedding pictures back and had to share this one with you.  Our photographer got quite a few fabulous shots of D at the wedding.  I was so thankful for that because no body else had many, as Diego checked out early and had to leave. 

So enjoy my little monster doing his presidential strut. 

The pic makes me smile every time I see it. 🙂

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 *