RSS Feed

Tag Archives: mourning

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.

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.

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

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 *

Untitled

This morning I just wanted whisk  Diego away from school and go home to hide from everything that hurts him.

I didn’t.

Instead, I put on my strong happy face, helped him wipe the tears that were falling endlessly, talked to him a bit about “dolphins riding on killer whales” (his happy place), and then left.

But my heart is still there.

At school

with him 

calling  me.

This is the worst f*cking feeling ever.

*pic credit-http://kiptip.com/rants/03/19/2009/symptoms-of-a-broken-heart/*

Long Night

Sweet holy autism Batman!!

Last night Diego was the most deregulated, hyper, irritable that I have EVER seen him.  He was a stimming mess choosing to walk in circles while biting his hands, or jumping on everyone/everything in the house seeking sensory input.  Nonsense words took the place of the proper names of things.

No matter what I did nothing helped. 

At one point he was sweating and red in the face because he had been running himself silly, it was too cool here at 6 o’clock here in San Diego for anyone to be sweating.     His therapist also noted that Diego was extremely out of sorts at their visit yesterday. 

But we made it.

Barely.

Sleep didn’t come for awhile and it wasn’t peaceful as he was tossing and turning all night.

*sigh* My monster 😦

We are set to start the Tenex this weekend.  Diego’s father has of course refused to give him any of the medication. I have worked it out with Diego’s aunt and she will give it to him at night and I will have the school give it to him in the morning when Diego is with his father once a week.  I spent a good 30 minutes attempting to discuss the specifics of the med, the people I spoke with regarding its safety and he wouldn’t hear any of it.  He is just doing it to be difficult, as his argument is not medically based just bitter and angry.

In the future if this keeps up and I can’t find a way around it, we will be in court….again

I hate court.

As if autism weren’t hard enough, I have to continue to deal with him…blah

It is August which means school is starting on the 30th, and I have been trying to get everyone together for Diego’s transitional IEP meeting and not let the anxiety about Kindergarten show. 

But my stomach is in knots. 

I am not sleeping, and top of this it is time for D’s yearly pysch eval with the woman he initially saw a year ago, whose report came up inconclusive. 

I am meeting with her August 13th and the eval isn’t being done until October. 

Should be interesting at best.

I have NEVER had a good experience with the neuropsych…EVER…but will come prepared 🙂

Two steps forward and one step back

Damn it

I have been so overcome with so much that I haven’t been able to put all of my thoughts and feelings into words for days.

But I’m gonna give it a go today. 

Diego has kept me very busy with a myriad of sensory issues and impulsive acts that I thought we had conquered.  Diego has started touching again, not in inappropriate places, but inappropriate all the same.   Of course this is causing problems at school, and nothing we seem to distract him with curbs the behavior.  Kids are shunning him when he does this and it breaks my heart and because of his increased sensory dysfunction and anxiety, his language has also been extremely affected.  An outburst this morning had me ducking to keep from being knocked upside the head by D’s sunglasses while driving him to school this morning.  All because he couldn’t see through them and couldn’t find the words to express that he would like me to clean them.  He also can’t seem to be away from my side…errrr lap for more than 5 minutes and while I love cuddling, I also would like some space.  I’m not exaggerating either, I can’t get any time alone, it is like he is a drug addict and his drug of choice is my lap and ears. 

Maybe it is time to increase his sensory diet at home, another social story, stick harder to his visual schedule that he seemed to be doing so well without???

On top of things I have been sick the past two days which means he can’t be all over me and this hasn’t elicited the best behavior. Rickey has tried as much as he can to stand in, but D wants mommy.  Once I explained at length that mommy has bad germs, my germaphobe laid off a bit.  He now asks me every few minutes if I am better yet. 

So sick as a dog I took D to his neurology appointment yesterday (no way we were missing it as it takes forever to get in).  After giving Dr Trauner the run down of positives and negatives that have been occurring, she said two things that knocked the air out of me:  #1 his diagnosis has officially changed to High Functioning Autism, which would be great if it got D additional services but the regional center refuses to listen to the neurologist  and #2 She want to start him on Tenex for impulse and anxiety control before he starts school. 

Meds….

He is 5…

I don’t know what to do. 

I mean I trust her, Dr Trauner knows what the hell she is talking about.  I work in medicine, have done so for 9 years and I have seen medicine work for so many other medical issues.

But God I am so scared to go this route, I think it also cements the fact that autism isn’t going anywhere and I am having a very hard time with it.

So much for “acceptance”.

Anyway, Tenex is frequently used to treat high blood pressure, but is also used for other things.  Like the issues Diego and kids like him have.  It isn’t a stimulant or a narcotic.  I have read that the side effects are mild, one of which is drowsiness, and hell we could use some help with sleep in our house.

But what if it changes who he is??

No matter what I do, I am concerned that I may make the wrong decision….

On top of this Lyric is going through puberty, which enters an entire new realm of parenting that I am a complete novice at.

*sigh*

I’m doubting myself and I am sad along with so many other emotions.  If anyone reading this has had any experience with Tenex please share it with me.  If you are not comfortable writing it here an email can be sent to sonidoinquieto@gmail.com.

Thanks 🙂

One less thing…

One thing down…

Many more to go….

Court is done, and everything I coud ask for to ensure Diego will get what he needs on a regular basis was approved by the judge.  In fact, Diego’s father didn’t even show up. 

Random right??

But prayers were answered and I am so thankful for that.

As I was filling my sister in she made a comment that I didn’t seem to happy about the outcome.  I had to explain to her that this is very bittersweet for me.  It is foreign to me to take a child away from a parent he loves so much and only allow a single weekly overnight visit, I know how much Diego loves his daddy.  But at the same time I can’t argue the fact that over the past two months (since spending this decreased time with his father) that Diego hasn’t had a single violent tantrum and his language has improved significantly.  Just yesterday Diego’s teacher commented that Diego is really using his language much better in school and at home he is saying please and thank you without being prompted about half of the time.  At the end of all of this it isn’t about me or Diego’s father, it is about what is ultimately best for Diego. 

So that is done. 

I will say that I am alarmed that the courts seem to have such little knowledge about autism.  Even my attorney mixed up sensory diet vs food diet for D.  We don’t do the GF/CF diet but when she presented my case to the judge she mixed the two up for the umpteenth time, even though I have explained to her a dozen times what a sensory diet is. 

I snickered in court when she made the mistake again…man all of that money she charges and she still couldn’t get it right…lol…whatever… it is done!

When all is said and done, it really is the things that seem so little to others that are major to me and keep me going.

Indulge??

 

This morning on our way to school;

D: *in his carseat* “one….two….three”

Me: “Ok Diego time to get out of the car”

D: “No wait!!”

Me: “What’s up?”

D: “I need to save these three!!!” *opens his hand that is holding three ‘warm and loved’ cocoa puffs*

Me: “Ok D, let’s  just put them back in the bag and you can grab them after school.”

D: “No mommy I can’t, they will get mixed up”

Me: *stumped* “that’s ok honey they are all the same.”

D: “No these are for you, Rickey and Brother”

Ummm I’m not sure his face could have been any cuter….I promise…even cuter than the pic above! (if I do say so myself 🙂 )

Me: “how nice of you to share poppa!!, but it will be ok if you put them in the bag and then you can give them to us after school”

D: *now visibly annoyed* “MOM NO…….these three are for you guys, not the other ones…they need to be separate….”

So what did I do??

I wrapped the three cocoa puffs into a napkin so that they were separate and then placed them in the plastic bag.  It seemed very important to him, in fact he probably would have had a full on meltdown if I asked him to put them in the bag one more time. 

So once drop off was done and I was driving to work I started to think about the fact that I indulge a lot of  Diego’s obsessions and compulsions, especially the ones I think are harmless. 

I mean it doesn’t hurt anyone and I am challenging him everyday in other areas, so does it really matter? 

But maybe on a grander scale it does matter, because there will be someone at some point that will just treat these seemingly small things as an annoyance and not do as he requests.  How will he deal if I have not prepared him for this?

Eh just something to think about.

I have been questioning a lot lately as far as my parenting and interventions go.  Diego has started stimming, his hands are in his mouth all day everyday.  I have tried everything on the sensory side of things and nothing curbs it.  But from what I have read about stimming it helps calm him and allows him to  concentrate. 

So should I really try to stop it?? 

I mean aside from the fact that a katrillion (yes a katrillion) germs lurk on his hands any given day.  His hands are not bleeding or chapped so should I just carry hand sanitizer everywhere we go and let him go to town???

Ahhh I am so confused….

Thoughts please!!

We had a nasty little earthquake last night. 

I hate earthquakes so much. 

There is no warning for when they are coming and no idea of how big they will be until after they happen, this makes an earthquake the worst natural disaster in my opinion.  Last night the ground moved and their was an eerie rumbling sound.  Usually when we have an earthquake they house kind of sways, but I promise the ground moved under my feet and it was a trip.  Poor Lyric just about had a heart attack and Diego was indifferent.  We had the boys hang with us in the living room for a bit, but eventually put them back to bed when it seemed like the earth had settled for the night.  As I was tucking D in he gave his reasoning for why earthquakes happen.

D: “I know why earthquakes are here mom.”

Me: “you do??, why??”

D: “It is the earth talking to us.”

Kind of deep right?? 

Especially when you think of all of the damage being done to our planet right now (read BP disaster). 

I was watching “Life After People” on the History channel late last night and it was quite an eye opener to all of  the harmful things that we do to our environment that we really don’t realize.  I have never been a super “green” person, but may start taking some baby steps onto that path.