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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.

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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.  🙂

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.

“You can’t wring your hands and roll up your sleeves at the same time.”~P. Schroeder

Overwhelmed would be an understatement, but the closest word to describe the past few weeks. 

The details of everything would bore anyone, just because it would be too damn long to read.  But I need to get at least part of it out, so here is the condensed version.

In addition to running an entire clinic, with minimal help (see staff shortage and the hospital’s tragically long  hiring process), Diego has had me in the ER and doctors offices a lot more than we typically are.  In he past D has had some abnormal test findings for his brain and DNA, but typically we don’t visit the doctor ‘doctor’ this much.   

The abnormal brain finding shows that the part of his brain responsible for his visual motor skills  is being pressed against by two dilated perivascular spaces, so he will have to work harder in an area where he already has difficulty due to his autism. 

His DNA shows  a balanced translocation and chromosome deletions that currently have ‘undetermined clinical significance’ (aka waiting on research to catch up) and now we can add a benign abnormal heart rhythm with possible premature atrial contractions or the benign abnormal heat rhythm with panic attacks.  The brain and chromosomes are old news for us as it has been a few months.  The heart is new and is what has kept me running around (even more so than usual) like a chicken with her head cut off.  We are currently waiting to see the cardiologist to hopefully give him a clean bill of health, other than the arrhythmia.  While I am hopeful that what is going on has nothing to do with his heart, it breaks mine to think that my baby at the age of 5, is having panic attacks. 

Diego is verbal, but he still has a very hard time with his expressive (and pragmatic) language.  Anyone that has experienced an irregular heart rate can attest to the fact that it causes one to be more aware of what their heart is doing and usually causes alarm, even if one already knows that it is due to caffeine, etc…

But I think that when it happens to Diego in addition to the usual things that assault his senses, it is all too much and ends in a panic attack :(. 

I am almost positive this isn’t a cardiac issue, Diego’s anxiety is constantly through the roof.  If it isn’t a cardiac issue and is an anxiety issue, I am sure someone is going to hint to an anti anxiety med for him.  To possibly avoid any new medications, I am going to work with him on new relaxation techniques and how to apply them when his heart rhythm changes.  I will still obviously work on recognizing and expressing the anxiety, but the heart rhythm is tangible and my little concrete thinker will hopefully apply the relaxation techniques that I teach him are “for when his heart acts funny”.  I really don’t want him on anymore meds. 

Behavior has also been an issue, we were tweaking his Risperdal dose (not causing the heart issues I checked 🙂 ) and his beahvior was just escalating.  After emailing Beth and Kim (Thank you both for being amazing) and hearing about their medication experiences it was all too obvious that I needed to take him back down. 

So I did. 

I was  increasing it on our Neuro recommendation to hopefully decrease the frequency of meltdowns, especially since it had already provided some slightly positive results with the intensity of his meltdowns (aka his self injurious behavior).  I am going to take the behavior we have now, it is an improvement, even if not ideal.  We will also continue to try techniques that aren’t medicine.

The increase had me ready to enter the loony bin and probably poor D too. 

I am going to end this with a plea to you all.  California is proposing a 750 million dollar cut to DDS services, as a result of this they are trying to impose new guidelines for services that would violate our children’s rights under The Lanterman Act.  The DDS has posted a survey for parental feedback and of course the questions are just difficult enough to try and discourage us from answering. 

KTLP has posted responses to the questions as a guideline for parents, this is listed after the survey link below.  Please follow the link below, complete the survey and help us advocate for our babies. 

I spent 16 months fighting to get D into the regional center, I needed help paying for the very expensive ABA therapy that D needed, that is all I wanted from them as my insurance has covered most everything else (after some pushing on my part).   Thankfully he was finally qualified for services two months ago, but there is still a lot of red tape to navigate until he gets his ABA therapy, possibly costing us another precious few months.

That was 16 months he could have been getting ABA by a behaviorist….not mom, but because we couldn’t afford to hire someone and The Regional Cener screened us out (due to their ‘standards’) with no compassion, we lost that precious time. These new ‘standards’ that they are trying to impose on POS services will hurt the development of a lot of our children. 

Thank You 🙂

Here is the link for the survey,

http://www.dds.ca.gov/survey/

From the KTLP Website:

Statewide POS Standards will KILL the promise of The Lanterman Act. If you want to stop this, we suggest you answer the DDS Survey something like this:

Question #1: Suggested service standards about who should receive these services:
Answer: Those individuals whose Individual Program Plan (IPP) team has identified a need for these services, as described in The Lanterman Act Section 4646 (a) – (d).

Question #2: Suggested service standards about how often a specific service should be provided:
Answer: As often as the IPP team determines is necessary, as described in The Lanterman Act Section 4646.5 (a) (4).

Question #3: Suggested service standards about how to make sure the services provided are useful and effective:
Answer: Usefulness and effectiveness of services should be determined by the IPP Team at every IPP meeting, as described in The Lanterman Act Section 4646.5 (a) (6).

Question #4: Suggested service standards about the qualifications and performance of the person or organization that provides these services:
Answer: Services should be provided only by persons or organization that are properly vendorized as described in The Lanterman Act Section 4648 (a) (3) (A).

Question #5: Suggested service standards about the payment for these services:
Answer: The Lanterman Act, in Sections 4648 (a) (5) and 4690 requires the Director of the Department of Developmental Services to develop and maintain equitable processes for setting rates to assure that Regional Centers can secure high quality services for persons with developmental disabilities. The Director should comply with these laws.

Question #6: Suggested service standards about the responsibility of parents and consumers for these services, e.g., co-payment, time commitment, etc.
Answer: The State of California has accepted a responsibility for persons with developmental disabilities and an obligation to them which it must discharge. (The Lanterman Act Section 4501). The state does not ask parents and students for co-pays in California’s pubic schools and the same logic applies here.

Question #7: Suggested service standards about self-directed or self-determination options for these services:
This question cannot be answered until California has a clearly defined mechanism for implementing self-directed or self-determination options.

My Own ‘Special’ Groundhog Day

Remember that movie “Groundhog Day” starring Bill Murray?

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

Like Bill in Groundhog Day.

Follow me.

This is going somewhere.

I promise.

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

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

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

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

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

Like there is always something more.

Something I could do better.

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

But…

every so often?

SMACK!!!!

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

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

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

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

It was the way it should be.

Ha!

The way things should be??

Silly naive girl..

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

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

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

My child has autism.

MY

CHILD

HAS

AUTISM

We are the 1-110 statistic.

Holy

Shit.

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

the

despair

shock

sadness

and

the suffocating  fear

have to be dealt with all over again.

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

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

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

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

I wonder if it will stop?

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

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

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

*sigh*

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

So that is what I’m doing 🙂

A Battle Won!!!

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

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

I am so thankful.

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

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

UGH