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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.

Miss Kelly

Last night Diego had his Open House. 

Once we got home my Facebook status read:

“My baby stood up in front of 50 parents, spoke 3 lines and made it through both songs. He and his wonderful teacher Ms Kelly are amazing! Never underestimate the power of a teacher that cares. I am forever grateful to her.”

Despite the sensory nightmare that was last night Diego managed to get through the entire evening with out melting down once, and he even participated in the performance.  He looked pained through a lot of it, but he got through like a champ.  The first thing Kelly said to me after they got off stage was “HE DID IT!!!”. 

I just cried and thanked her.

When I first met with Miss Kelly, I was pretty positive that she wasn’t going to be a good fit for Diego.  She came off  immature, slightly arrogant, and would cut me off before I was done with my sentences.  I would soon learn that I was very wrong.  I think she may have thought that I was crazy overbearing psycho mom. 

Maybe I am a little bit 🙂

During the  first month of school Kelly and I hit a few bumps.  But after that first month, Miss Kelly fell in love with Diego (her words).   She knows how to manage Diego and the plethora of behaviors that he comes with.  I take comfort in knowing that Diego is ok when he is with her. 

Emails like this prove to me everyday that we are incredibly blessed to have her as his teacher:

Super day! Diego had EXCELLENT restaurant manners and was such a good kid : )Loved his share too…. only that little guy would find a way to bring sea animals and the world together ; ) Loved it!”

and

Great day Shivon! I can’t express how much I love that little guy and how his silly little faces and smiles get me through the day.  Today I asked him if he would stay in Kindergarten forever and he gladly replied, “Sure!”

and

“D was a trooper today- K let me know about his early pickup and I forgot to remind R before I went to lunch.  My heart dropped when Diego already had on his green fieldtrip shirt and was sleepily walking to use the restroom when I came back from my break.  LUCKILY, he wasn’t phased at all when I informed him that you were getting him early! Looks like our little man is adjusting better to change : )”

She is such a gift.

I thank her every time I talk to her, because I feel like my simple words just aren’t adequate enough to convey the depth of my gratitude to her.  To prepare for next year she has even offered to accompany me to Diego’s IEP meeting.  I expressed to her that I didn’t want her to lose pay as she will be missing work to attend and she looked me square in the eye and said “I want to be there”. 

Once this school year ends I will miss having her as Diego’s teacher , but am happy knowing that we will always have her as our friend 🙂

A Special Needs Tribe

Every second and fourth Friday at my clinic is our epilepsy clinic, these patients have seizures that require the care of two world-renowned epileptologists. 

It isn’t a coincidence that a lot of these adults are developmentally delayed and due to tragically long wait times in our clinic, I get a lot of time to get to know the caregivers and parents of my patients. 

I get to speak with moms that have raised their wonderful children in a time when there was little to no support, I envy their strength.  We compare stories, services, bad times, and good times. 

I always end our conversations by telling each mom that she is doing an amazing job, each time I say it, one or both of us cries. 

Every second and fourth friday I am surrounded by people who ‘get it’, they get the good days, the bad days, the fear, and the hope. 

My mission on these days is to be a shoulder, an ear to vent to, and to let them know that I will make sure that their children are medically taken care of.

I ‘get it.’ 

We are a tribe of parents with children that have special needs.

After these clinics my level of emotional exhaustion varies,and it is always directly connected to what is going on in my home. 

I found myself in tears yesterday as the mother of a young man with severe autism and I shared stories of  “when one thing seems to be resolved, another thing gets thrown at you.”

Another mother that has two boys with Downs Syndrome started crying when I told her that her boys are the highlight of my day when they come in and that she has done a great job.  She tried to brush off the compliment by saying “she just does her best” so I grabbed her hand and told her she that has raised two amazing young men (seriously I love them!). 

We hugged and cried for a long time.

We need to hear this.   The dark times are so dark for most of us and even the wonderful times seem to be tempered with a sense of foreboding.

When I got home after workmI logged onto Facebook and  Beth had reposted a blog entry by MOM-NOS on Hopeful Parents. 

 Just in time.

ANYONE who knows ANYONE that is raising a child with special needs, should read it.

Seriously.

Here is the link.

Thank you MOM-NOS for being so courageous and helping the rest of us put words to what we feel.  You have done something amazing.

Keeping The Lanterman Promise

You can find me up on my soapbox over at Hopeful Parents 🙂

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.

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. 🙂

Holiday Spirit

There is so much going on with school that I need to  blog about, and will later.  But in the interest of preserving my sanity today, I am writing about our holiday season so far.

Enjoy 🙂

I made spaghetti with a different sauce the other night.

I should have known better.

See noodle debacle here

Me: “Papa why aren’t you eating your spaghetti?”

D: “I don’t like it….”

*thinking*

Seriously, Mr. ‘ I eat everything in sight ,since I started the Risperdal’??

Me: ” Are you sure that you don’t want to try another bite?”

D: ” It tastes like trash, yucky yucky trash”

Me:” Oh….ok…”(speechless and trying not to laugh)

My girlfriend looked at me incredulously, like ‘did he really just tell you that your food tastes like trash??’

When we were out of earshot, I explained to her that I switched sauces and apparently chunky Ragu tastes like trash. 

I love Diego’s honesty.

Her and I were trying to get out of the house to get some Christmas shopping done, so Rickey ever so arrogantly proclaimed “I got this” and told me to get a move on. 

Well alright then.

Rickey thinks that I am a little too accommodating with Diego, I actually think that I am just more in tune.

The reality is, that Rickey is an undercover softyand he thinks that I have no idea that he is the Stay Puff Marshmallow Man.

Ha!

When I got home with the tree, Diego proudly declared that he had the GOOD spaghetti with meatballs in it.

Rickey gave him spaghettios.

See?!

He is pure mush 🙂

In an attempt  to take advantage of Diego’s newfound holiday spirit, we decorated our Christmas tree on Saturday. I had the christmas carols playing and D had his football Christmas hat on. 

It really felt like Christmas, errr well kind of….80 degree weather screams beach…

But Christmas?? 

Not so much.

I know some of you would like to choke me as you are being enveloped in snow at the moment, but it is really weird to celebrate the holidays when it is so warm outside.

Dang, can’t we just have our typical San Diego  ‘chilly’ 60 degree December weather?! 🙂

Anyway, regardless of the temperature Diego encompassed the holiday spirit…we had a lot of fun and I am looking forward to experiencing more with him over the next two weeks.

I just want to squeeeeeeze him!!

After hearing about Diary of a Mom’s success with Santa, I think we may venture out and try it this year. 

Thanks for the encouragement Jess 🙂

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