RSS Feed

Tag Archives: pragmatic language

The IEP Meeting

Diego’s IEP meeting was on June 16th, to say that I was worried about it would be an understatement.  There was no option of private school if the IEP meeting was a disaster.  The week prior to the meeting I went to visit the school.  Lyric went there all five years of elementary and did amazing. 

I have always been impressed with the school.  But I needed to get a feel of it from Diego’s perspective as best as I could.  The VP was the one taking me around the school.  One of the things he said in passing while we were walking around stuck with me;

“We will do whatever Diego needs to be successful here.”

Did you hear angels singing when you read that??

Because when he said it, I did.

The school has added a few more things to help their students, a therapy dog in the reading room for students that are too anxious to read aloud to their peers or teachers, yoga once a week, an organic garden that the children tend to, and a fitness arcade (think of  a gym with Wii, Connect, and DDR). 

Needless to say I was pretty impressed. 

After I visited the elementary school I was off to the middle school for Lyric’s academic fair.  There I found out that Lyric’s long-term sub was actually going to be teaching at the elementary school the next year and that she would be Diego’s teacher. 

Random right?!?!

I spoke with her and she was amazing, I found out that while she can teach typical classes that she has her special education credentials and that she taught a less sever day class the year prior year which was composed of 12 students, 11 with autism.  She started out throwing ideas to accommodate him in a typical class and asked about his IEP meeting.  When I told her that it was the following week, she said that she would arrange to be there.

Do you hear the angels singing again?? 🙂

I was very optimistic after  leaving both schools that night.  But I was worried about how it would all go once everyone had to put these things in a black and white legal binding document. 

The day of the IEP came and I was as ready as I could be.

Diego’s Kindergarten Teacher Miss Kelly was coming with me and had prepared work samples along her own list of Diego’s areas of strength and challenges.  I had all of my questions and goals written out, ten copies of Autism Life Skills by Chantal Sicile-Kira ( the most helpful book I have read to understand my baby) with a little note explaining why I was giving them the book, and a box of Uncle Biff’s Killer Cookies (I can’t bake cookies 🙂 ).  Diego’s goals were very hard to write as the initial district assessment was NOT data based.  One of my requests was going to be that the school re-assess him so that we had actual data to write goals from.

Kelly and I drove together and got there early.  I was incredibly nervous, but ready to go. I had written everything down so that I wouldn’t forget a thing.  Public speaking  has never been a problem for me, but when the stakes are so high much of any skill set can disappear.   

The pressure to advocate for Diego was immense. 

The meeting began. 

The Psychiatrist, Principal, Vice Principal, Speech Therapist, Counselor, Resource Specialist, and Head of the Charter School Special Ed Consortium were there.  Once introductions were out of the way they began  the meeting by asking me where Diego was now. 

I cried, well not full on crying but got choked up. 

Damn it! 

I told them of the progress that Diego has made and the challenges he still faces.  I told them of his wonderful personality and his bad days.  After I did that I went over his areas of need and what I was concerned about in the big school.  Everyone came forth with ideas and solutions, this dialogue about how to best accommodate him went on for about 30 minutes. 

I was in heaven!

They LISTENED to me, and they were as concerned as I was.  They understood the nights I spent lying awake at 3am worrying about how he would do at recess.  While we were on the topic of Diego not knowing any of the kids at the school, the speech therapist chimed in with;

“Well  we can be his friends, until he makes some here” 

The ENTIRE TEAM nodded their heads in agreement.  She asked that I bring him the week before school starts to meet her and his teacher echoed the same sentiment.

It was all I could do not to run over and hug her.

We discussed his current IEP and the difficulty of writing goals from the assessment.  They stated (before I did)  that they wanted to re-assess at the beginning of the school year and then we would have another IEP meeting for his goals.  The information Kelly presented was incredibly useful and the entire team thanked her for coming. 

I am so thankful for her.  

Every member of the team grabbed a book and expressed how excited they were to read it.   The meeting ended and we had a plan in place, a good plan.

After the meeting, the head of the Charter School Spec Ed Consortium gave me her email address,cell phone number and said to contact her any time.  Then she hugged me and said that this team was amazing and that Diego would be in good hands.  It turns out that her 22-year-old son has autism and just graduated from college. 

She gets it.

I left there with tears of relief rolling down my cheeks. 

The next day I sent an email to each person that was at the meeting to thank them and all of  the responses were incredibly positive. 

But there was a specific one, from the principal,  that brought me to tears.

 Hi Shivon,
You are such an inspirational parent.  You have taken such a proactive role as your child’s advocate, and have devoted your life to ensuring that Diego and your family reach their full potential.  I was humbled after our meeting.
Ms. D

I also just want to thank each one of you that offered support and advice as I prepared for this.  🙂

“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.

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 🙂

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 🙂

Our Community

Please follow me over to Hopeful Parents  to read about my take on our wonderful community.

Different Not Less

I met with a wonderful lady by the name of *Kristina back in March of this year to see if I would be interested in participating in a Mentor/Mentee program for parents of children on the spectrum (I never did the program).  We talked for quite awhile about my battle to get professionals to listen to me about Diego’s ASD and she shared a story about her brother with Asperger’s who was 17 at that time. 

She said that they grew up in a small town where  unfortunately a lot of people were not on board or educated enough to help her brother and as a result he had a pretty hard time growing up. In fact she was going to fly  her brother and parents out later that month to get the ‘official’ diagnosis from that fancy (jerk off) neuro psych that I was coincidentally taking D to as well.  It seemed to me that her younger brother was her inspiration to go into a career working with children on the spectrum and helping their families. 

Her love  for her brother poured out of each word as she spoke about him.  I remember telling her that I thought that it was beautiful  that she loved him so much and that I hoped Lyric would feel the same when he was older.

Later I ran into her again and she said that her brother did receive a diagnosis of Asperger’s and that he was having a rough time of it.  I told her that I could only imagine how hard it was for him  not to feel ‘normal’  living in such a tiny town.  Not a lot of room for escape I would imagine.

Now here we are in December and I received an email yesterday that made my heart drop to my stomach. 

Kristina’s brother took his life 3 months ago. 

She was sending an email invite to celebrate his life this December 3rd, which would have been his 18th birthday.  When he visited her out here he fell in love with a local amusement park and that is where the celebration is going to be this Friday.  I didn’t know them well at all, but that email shook me to the core. 

My worst nightmare is that Diego grows up thinking that he is less because of his differences and that this thinking will lead to depression and isolation.  He is already genetically pre disposed to depression as I have had my battles and so has a lot of my family. 

I know that this email isn’t about  Diego, I know that we have found out about his ASD far sooner than that sweet boy, I know THAT THIS ISN”T OUR FUTURE. 

It just hits so close to home, especially since right before reading that email Diego and I had a pretty difficult  exchange.  We were sitting around watching some silly cartoon and the following ensued:

D: “*Tomas  said he will not be my twin friend if I keep doing it”

(Tomas isn’t typically a kid who would say this)

Me: “doing what??”

D: “ears”

Me: “Oh honey were you touching Tomas’ ear?”

D: “I like ears”

Me: “I know baby, but sometimes people don’t want to be touched and maybe Tomas didn’t like it”

D: silence

Me: ” So maybe the next time you want to touch Tomas’ ear you can ask him.  But if he says no, you have to try your hardest not to do it.  I think Tomas will always be your friend, he just might not like having his ears touched.”

D: “Tomas is my twin friend”

Me: “Yes baby, he is.”

Then Diego hopped on my lap, gave me a hug, and rubbed on both of my ears for a good 15 minutes.

Diego has been with the kids in his class since they were all at least two years old and honestly the kids are very accepting of Diego’s quirks.  I’m sure poor little Tomas was just over it that day as he is the most understanding of Diego out of all of the kids.  But they are getting older, and my fear as we start at a new school next year is that the new kids won’t be as accepting or nice about not wanting their ears touched, the constant dinosaur talk, etc…which in turn will probably start the gears in Diego’s head, then eventually he will figure out he is different and then we enter an entire new realm of ASD challenges. 

I haven’t got a full grasp on all of the things that are thrown our way now, what will I do?

Diego is the most amazing child in the universe to me and I can make sure I tell him how wonderful he is everyday, but I can’t be his peer. 

I can’t socially accept him like his peers. 

I can only pick up the pieces

and

tell him

that

he is different

but NOT less.

I think that tomorrow we will definitely be paying a visit to Kristina’s brother’s favorite place to celebrate his life.

*name change for obvious reasons

Dino Dan

Diego has always had an interest in dinosaurs, but sea animals were his special interest until Dino Dan.

The premise of this Nick Jr show is that a ten-year old boy by the name of Dan has a very special interest in dinosaurs and can actually see them.  All Dan talks about to friends and family are dinosaurs and each one of them is intensely interested.  Dan’s mom pretends she believes him and his friends help him go on dinosaur missions. 

Personally I think Dino Dan has Aspergers and one hell of an imagination. 

Yes children with ASD have imaginations. 🙂

Just ask Diego who now sees various dinosaurs in our yard.

So anyway the show started in October and Diego is hooked, captivated by each episode.  Sea animals have taken a back burner and it is all about the T-Rex and his other dinosaur friends.  I DVR Dino Dan for Diego because it comes on while he is at school, but he has no clue I save all of the episoded…because if he did….Dino Dan would be playing on our TV 24/7. 

No Thanks.

My problem with Dino Dan is that Dan eats, sleeps and breathes dinosaurs, which may translate to Diego that it is ok to do this. I mean once Dan enters a conversation with a group of  his peers it is all dinosaurs all of the time, and what is nutso to me is that his little friends are not bothered by it at all. I know Nick Jr  didn’t make this show thinking about such things, but as Diego’s mom I can’t help but think about them.

So why do I DVR it for Diego?

He loves it.

After spending his days working out all of the challenges that come with ASD, who am I to deny him a half hour of pure bliss??

My major issue now (and it really has nothing to do with Dino Dan) is that Diego has started referring to dinosaurs by numbers.  I have figured out a few.  The T-Rex is 305 and the Brachiosaurus is 405 and I think the Spinosaurus may be 505, but I’m not sure.  Diego is under the impression that we share the same brain (*sigh* mind blindness) and that I know the dinosaur/number classification system that he has come up with, he gets quite frustrated with me if I don’t know what dinosaur he is referring to.

In other news, the Risperdal is helping with Diego’s behavior A LOT.  I was so hesitant to start it, but we are at a very low dose and the difference is amazing.  What the Risperdal doesn’t help with are the ADHD like symptoms. Diego is having a very hard time at school.  Between his gnat like attention span and his fine motor difficulties, he is having a time doing much of anything.  I have been wracking my brain for a way to help him focus and finally, after talking with our OT,  I found something that we haven’t already implemented that may work for focus. 

What is it you ask??

His iPod with some  classical music.

It has helped the few times that we have used it during OT and we tried it at school on Friday.  He got through all of his desk work, which is promising.  It is too early to tell if this will  be a long-term fix, but I am hoping that between the addition of the morning dose of Tenex, the iPod, the weighted lap pad, the sticker chart, and the angled writing board that he will be able to complete his desk work.

Socially??

We are stuck, this is the area that kills me.  Diego just finished a 4 month social skills group and I haven’t seen much progress.  The discharge summary didn’t show much either :(. 

Sometimes I feel like a hamster in that damn wheel thing…

Our next step is peer-to-peer therapy. 

Hopefully that will help him at least a little bit.

Feelings and things

At the Zoo playing on the Polar Bear Exhibit

Psych: “Diego can you tell me what a friend is?”

D: (squirming in his chair and stimming on his ears) “I don’t know”

Psych:  “Diego when I have a friend we play together, eat lunch, and hang out.  Is this what you do with your friends??”

D: (lifting the chairs two back legs off of the ground) “I don’t know…”

Psych: “Ok Diego, what about when you are happy?? What are the kinds of things that make you happy??”

D: (looking at me to save him and now practically devouring the hands that were just pulling at his ears)

Me: (rubbing his back) “It’s ok  Diego you can tell her what kinds of things make you happy.”

D: (never having looked at either one of us during the entire part of this assessment, looked at me and said) “Mommy I really don’t know….”

This went on for each feeling, sad, angry, and scared.  It was so sad to see him struggle so damn hard. 

I think this moment will stick with me forever. 

I knew he had a hard time, but this hard???

Because of this, I am trying to come up with a plan to teach him how to recognize his emotions and then verbalize them.  I have no clue how to begin, but I am going to research the heck out of it this weekend and work it out. 

I also just got the book “When My Worries Get Too Big!! A Relaxation Book For Children Who Live With Anxiety”.  I read through it last night and it is a fantastic book!

I hope that it will help him.

School is improving a bit, but now his teacher has been out very sick and he has had a substitute, he is very familiar with her so it hasn’t affected him much, but I am prepared for a couple of harder days once his teacher returns. 

He was just getting used to her.

On a side note…..

I have played with the idea of  becoming an Educational Advocate for the past 6 months and after much thought I have made the decision to take our local college’s Educational Advocate Certification Program.  The price is a bit steep but nothing compared to what I would have to pay to hire someone for every IEP meeting.   I have also learned that the powers that be in San Diego are talking about significantly cutting the school budget…..again. 

We all know what that means. 

All programs will suffer, special needs services were hit hard in the last round of budget cuts and word is that they intend to cut them further in this next round.

I definitely  need to be armed with all the knowledge I can fit in my brain to make sure Diego gets what he needs in school. I think spring will be a good time to start the course. 

It is only a two month program twice a week.

 Then by 2012, I intend to start the process of opening a non-profit to assist parents of children with special needs with getting their child’s educational needs met. 

Educational Advocates are very expensive and quality education shouldn’t be a class issue.  I am also going  to meet with a psychiatrist, whose son is also autistic, that my mother works with to discuss her possible role in this non-profit.  If I have learned anything this past year, it is that autism  is difficult to navigate in all areas and a lot of children are falling through the cracks.  With more children falling victim to the autism epidemic every year, I feel like I have to do something. I have no idea where I will find the time or the energy, but I am confident it will come.  I have quite a few people offering their services and that is incredibly encouraging, I think that maybe with all of us involved this non-profit could turn into something really big.

Rickey thinks I am nuts.

I want to blog about the situation with Diego’s dad, as he continues to pull shit that would make even the most serene person want to punch him in the face.  But the thought of it makes me too angry, and I am trying to find some peace.

Diego’s MRI is done, everything went so great.  I really love our Children’s Hospital, they would be perfect if they just did something about the assholes in the medical records department.  The MRI results will take a week or so, and I am very interested to see if it shows anything.  Plus Diego won’t stop talking about wanting to see his brain.  Should be fun times at our house once we receive the images, I love that he is so curious about such things :). 

When we were registering at 6am the morning of the MRI, the registrar told Diego that she liked his killer whale.

It was a bull shark

While practically making her kiss the darn thing he told her that it was a bull shark NOT a killer whale, and that it came all the way from Japan ( my sis sent it to him). 

She was very impressed and hell, I was too.

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 *