RSS Feed

Tag Archives: inclusion

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.  🙂

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. 🙂

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.

Hope???

 
 
 

 

Diego's attempt at a puppy dog face, looks more like "blue steel", but still cute as heck. No bias or anything 🙂

 

 

  

D: “rhinoceros is spanish for rhino” 

*le sigh* 

I love him. 

As we begin a new week, I am hopeful that it will be easier.  

I am hopeful that Diego will be less negatively affected by the change. 

I am hopeful that if things don’t get easier this week, that I have the strength to make it through.  

Hell that Diego has the strength to make it through. 

No matter how hard it is for me, it is ten times harder for him. 

His classroom is good, and I am well aware that this would be much harder if he had started public school.  

So we are going to make it. 

I am so grateful for all of the love and support that has been sent our way.  We couldn’t make it through without your encouraging words.  

I know that I am not alone, that each one of us in “the club” is going through our own little private mommy hell, watching our children struggle.  

How heartbreaking. 

But at least we are a good looking, uber talented group of moms 🙂 

If you are a parent with a child newly diagnosed with autism,  you need to read this,Welcome To The Club

I still read it at least once a week and a different  part gives me strength each time I do.

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/*

Come Visit Me

I am over at Hopeful Parents today.

Escuela

Goodness it has been a very busy week…..I have no idea how I made it through…but I did!!

Yay me

lol

School…as many of you have read previously Diego is to start Kindergarten this year.  The plan was that he would enter a public school with his IEP but no aide.  Not my plan, the school’s plan. 🙂  The charter school SPED Team, was wonderful, but aides are a lot of money and they are hard to get.  So the plan was have D start in a mainstream classroom with a student to teacher ration of 26:1.

Panic attack anyone?!?!

  So as the days have been leading up to the first day of school, I have been a hot mess. 

Randomly, the director of his pre-school stopped me last week and asked me about our plans for Kindergarten.  After I told him, he asked me to call him in the morning because he wanted to talk about a few things.  I was thrown off a bit, especially because the director and I just recently had it out regarding the court asking for info from the school.  I had no clue what he wanted to discuss as court was over and nobody had contacted the school about anything. 

Anyway, I called him the next day, and this man offered my baby a full scholarship to attend the private kindergarten that the pre-school also runs.

SERIOUSLY?!?!?!?

I was slightly skeptical at first, but expressed my appreciation at his generosity, and told him that after speaking with Rickey that I would phone him back.  Kindergarten at Diego’s Pre-school is $10,000, we could have never afforded that, especially with my reduced work schedule due to Diego’s appointments. 

The Kindergarten class student total is 8 students (NT), all of whom Diego is familiar with from pre-school, and one of which is his only preferred friend.  

 “Twin friend”, is what Diego calls him.

The teacher is currently being trained by an outside company in ABA therapy because the school is pushing an inclusion program. 

No brainer right??

So obviously,we accepted. 

This will give us another year to try to prepare Diego for being mainstreamed into the first grade the next school year. 

I  can breathe a bit easier this school year….slightly

I still have to speak to the district IEP team regarding how to handle Diego’s IEP now that he will be attending a private school for this school year.

Fun times…

On a side note, I went to Target to pick up a few things and had a “moment.”

It is back to school time, so parents were out in full force with their children excitedly buying things to prepare for the school year. 

As I was trying to grab my stuff and check out, all that was going through my head is that these parents were so lucky that all they had to worry about is whether or not their child would be happy with their new backpack. 

I know I am being presumptuous in thinking that none of those parents had any children with special needs. 

But at that moment I thought of all the prep we have had to do, to try and help Diego sit through class, make friends, write, and that is just the basics.  I don’t need to go over the IEP process with you all, because that in and of itself can drive a parent mad. 

I was so envious of what seemed to be the simplicity of their lives.  I stood there with my very heavy heart and knot in the pit of my stomach, jealous, full of self-pity, angry, and sad.   

I quickly got what I needed from tha store, walked much faster than usual to my car, sat in it, and cried my eyes out.

This is pretty consistent with how things have been with my emotional state. 

Done.

The Tenex is working with Diego’s auditory sensitivity.  We have just got up to the maintenance dose and I hope to see improvement in other areas, but I will take this for starters :).

Hodge Podge

It has been 8 hours since I gave Diego his morning dose of Tenex, in those 8 hours he has been a dazed and drowsy 5 year-old.  He has just laid around and watched cartoons, with no energy to do much else. 

This is very hard to watch.

I understand that this will more than likely get much better, hopefully sooner than later, but it is rough…right…now. 

I already have this horrible feeling in my stomach every time I crush the pill, mix it with applesauce, and give it to him, despite the fact that it is working. 

It was a manageable feeling when he was not really experiencing any side effects, but  today with a bit of side effects, the horrible feeling is anything but manageable.

The Tenex is doing a good job overall and I will keep this at the forefront of my mind while watching D in his zombielike state.

When I went to get D from school on Friday his poor teacher was horrified as she recounted the story of Diego’s self-injury that occurred that day.  He was in the writing group  and kept getting frustrated because his letters weren’t “perfect” and proceeded to hit himself  four different times.  His teacher did her best to redirect him each time,but when D is on his quest for perfection it’s nearly impossible to get him to think of anything else but.  She eventually had him move on to another activity with moderate resistance.  This is the first time he has demonstrated self-injury to this degree at school and it really concerned her. Unfortunately this isn’t new to me.I discussed different ways to handle it, if it happened again, and I spent a lot of time comforting her.

As I write this it is unreal that this is part of our reality, that self injury doesn’t jar me the way it once did.

I am so thankful for this blog.

Writing is my only way to process all of this.

Yesterday I met with the neuropsych that I initially took D to see a year ago when I had my ASD suspicions.  The one that told me that based on her 90 minute assessment, that she didn’t think that D was on the spectrum, but bring him back in a year and that she would re-assess. 

Despite the fact that Diego has now been diagnosed with ASD, I made the appointment to see her and then made the appointment for D’s assessment which isnt until October.  So when we met yesterday, I came with all of my reports not expecting much from her. 

My general opinion of neuropsychiatrists isn’t very high due to some crappy experiences, but after reading over everything that I brought, that woman looked at me and said he is definitely Asperger’s/HFA.  She told me that with all of the interventions Diego has had, if it wasn’t ASD he would have gotten better, he hasn’t.

Duh

She went on to explain her hesitance in making this diagnosis a year ago, as she feels ASD is typically being overdiagnosed.

I could tell she was scrambling. 

I let her for a bit.

I finaly explained to her that I understood her hesitance, but that she may want to LISTEN to the mother of  the next child a bit more. 

If I have learned anything it is that I KNOW my baby and I would assume that most mothers of sound mind and body (this is subjective..lol) are on the same boat. 

So with that said, she stated that she will repeat the ADOS in October and that is that. 

I couldn’t care less about this upcoming assessment as it will have no effect on what we already know.  The only thing that may come out of it is that the school district and the regional center may pull their collective heads out of their collective  asses and give D the services he needs.

Which brings me to Kindergarten, I just want to scream every time I think about it. But ‘think’ I must because Kindergarten starts in 2 weeks, and the reality isn’t going anywhere….at all.  

In three weeks D will be starting a social skills group with a focus on school readiness and I am hopeful that this will give him better coping skills for school.

blah

On a lighter note, last night I gave D some craft supplies and he came up with the ‘Blue Whale’ masterpiece below!

Yup, I just wanna bite him!! 🙂

Tenex and Kindergarten

*driving home from Lyric’s summer camp*

Diego: “Mooooom…..we must pray to the earth.”

Me: “Oh….really???”

Diego: “I prayed to earth when I was sleeping.  The earth spoke to me.”

Me: *maybe I am playing too much reggae around him..lol*

“It did? Well what did the earth say?”

Diego: “The earth told me I need ketchup AND ranch with my chicken nuggets.”

Me: “Oh…..”

Well Day 5 of the Tenex and I think I may be able to check off “personality change” from my list of concerns.

So far so good. 

We had an issue of drowsiness for one day after starting the Tenex but he got over that.  On Friday I will add his morning dose, but even on just the evening dose there is improvement in his participation in circle time at school. 

Yesterday his OT and I both noted less anxiety as he ALWAYS asks what’s next and didn’t one ask at all during their entire hour yesterday.  He also tolerated the screaming by another child much better than usual.  Children crying/screaming is Diego’s kryptonite, he loses all motor planning, speech ,and starts to either stim like crazy or get very very silly.  Yesterday his speech was definitely affected but he was still able to get the task done. 

Improvement?? 

Most definitely.

But the kicker was Monday in the waiting room of his social skills group.

Diego said “Hi” to another child in his group.

UNPROMPTED!!

Not even a minor prompt…

NOTHING!!

He simply LOOKED at the other boy and said “Hi, look at my snake book”

I cried

right there

in front of everybody and their mama

(literally…lol)

So maybe the medication that feels so incredibly unnatural to give him is working just enough to take the edge off and allow him to utilize some of the skills he has been taught consistently over the past year.

I am cautiously optimistic.

Kindergarten starts in a little over two weeks, and this will be the true test.  He will be completely prepared with sensory and visual support materials.  I bought them all as I prefer not to depend on the school for this. 

lol…control freak much?!?!?

Hopefully between the material support, the therapies, and the Tenex he will do well. 

Hopefully there will be no need for a personal aide, although the look on D’s preschool teacher’s face when I told her that he would not have an aide mimicked what I have been feeling.

Panic.

D will be starting a school readiness social skills group this Saturday and we will be digging into his Kindergarten social story this weekend as well. 

The Transitional IEP meeting should be happening the week of August 23rd and then school starts on the 30th.

My anxiety is through the roof!!

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 🙂