Showing posts with label Mom's Journey and Lessons. Show all posts
Showing posts with label Mom's Journey and Lessons. Show all posts

Autism Moms Have Stress Similar To Combat Soldiers

As a mom who was advised to that I was suffering from PTSD after Nick's diagnosis and my divorce ...all I can say is stress is real for all of us, and I'm sad our families have one more box to check. :(   

Donna

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Autism Moms Have Stress Similar To Combat Soldiers

By 
Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, new research finds. These moms also spend significantly more time caregiving than moms of those without disabilities.
Researchers followed a group of moms of adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days researchers measured the moms’ hormone levels to assess their stress.
They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.
“This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, a researcher at the University of Wisconsin-Madison who authored the studies. “The mothers of children with high levels of behavior problems have the most pronounced physiological profile of chronic stress, but the long-term effect on their physical health is not yet known.”
Such hormone levels have been associated with chronic health problems and can affect glucose regulation, immune functioning and mental activity, researchers say.
In a companion study, the researchers followed up with the same group of mothers daily to interview them about how they used their time, their level of fatigue, what leisure activities they participated in and whether or not stressful events occurred. This information was then compared with data from a national sample of mothers whose children do not have disabilities.
Mothers of those with autism reported spending at least two hours more each day caregiving than mothers of children without disabilities. On any given day these moms were also twice as likely to be tired and three times as likely to have experienced a stressful event.
What’s more, these moms were interrupted at work on one out of every four days compared to less than one in 10 days for other moms.
Despite all of this, mothers of an individual with autism were just as likely to have positive experiences each day, volunteer or support their peers as those whose children have no developmental disability, researchers found.
“On a day-to-day basis, the mothers in our study experience more stressful events and have less time for themselves compared to the average American mother,” says Leann Smith, a developmental psychologist at the University of Wisconsin-Madison who worked on the studies. “We need to find more ways to be supportive of these families.”
In particular, the researchers say that parents need better respite options and flexibility from their employers. Further, they say, programs to help manage behavior problems can go a long way toward improving the situation for mothers and their kids alike.

Can you fail at Spiritual Awakening? I did :(

I thought I was pretty darn "awakened" but if I go with this list, not so much :(  I agree that there's an A out there with my name on it, but it stands for Autism. Reading this list I was struck by autism's impact in my world, and through my autism life lens here's my response to each item question.




1. An increased tendency to let things happen rather than make them happen.
Grade: F
I understand that in reality I control very little, and what little I control is me. However in my "A" world I have the opposite I have increased tendency to make things happen. I have to make sure my kids are okay. I have to make sure they are making progress. I have to keep the house clean, the frig full. If I don't make things happen who will?

2. Frequent Attacks of smiling.
Grade B
I do this!! Living with Autism can help you appreciate all the things that are going right. My kids make me smile. My family makes me smile. Our dogs make me smile. The "Tribe" that help raise my kids make me smile. Having a home makes me smile. Yummy food and wine makes me smile. Working legs and hands and arms make me smile.Nature makes me smile. Music makes me smile. A job well done makes me smile. In general life makes me smile.  In this case "B" stands for I could smile more :)

3. Feelings of being connected with others and nature.
Grade A
I'm connect to everything and I get it. My ex husband used to call me an open wound, because I feel everything around me. I call that compassion and empathy, things we need in this world.

4 Frequent overwhelming episodes of appreciation.
Grade A
Strongest is when both of my kids are right next to me and they are happy and safe I feel so grateful. I get this overwhelming feeling of appreciation when I realize how blessed we are to have each other, how blessed I am to be able to take care of my family and how many things that could have turned out bad, and they didn't.

5. A tendency to think and act spontaneously rather than from fears based on past experiences.
Grade C
Ha! The only spontaneous reaction I can count on, is how spontaneously I can react to Nick's spontaneous actions, and I am good at that.

6. An unmistakable ability to enjoy each moment.
Grade B
I'm a pretty happy person and autism has made that both easier and harder at the same time.

7. A loss of ability to worry.
Grade C
Autism means not outgrowing the worries you have with children, only adding the worries you have when your children become adults. So, no I have not lost the ability to worry, but I have chosen to worry less! I'm not consumed by worry, but I am concerned. I am concerned if my kids are getting all they need, I am concerned that I am make enough money to care for them now, I'm concerned about having enough money for Nick to have some sort of security as an adult and the money to pay for his lifelong care. I am concerned every time my children leave the house, will they be okay.

8.  A loss in an interest in conflict.
Grade A
Conflict is a part of life, but if this question means loss of interest in creating or not stepping up to extinguish conflict swiftly, absolutely. I just no time for it!

9. A loss of interest in interpreting the actions of others.
Grade B
I'm still asking "What were they thinking?", "Why did they do that?" mostly as it relates to my children, and especially as it relates to people who interact in Nick's world. Oh, and don't let me get started on people who I think are mean to special needs kiddo's. But just like conflict I have less time for the luxury of pondering things I can't control and that have nothing to do with me.

10.  A loss in interest in judging others.
Grade B
Oh my gosh, I don't have a conscious interest, but I still catch myself doing it! I don't know when I realized that I was judging folks up one side and down the other. But I'm sure it happened about the same time I saw how people judged Nicholas. Nothing like watching people judge those you love, and feeling that sting of hurt to wake you up to your own behavior.

11. A loss of interest in judging Self
Grade C
There's nothing like raising a kiddo with an illness that has no known cause or cure to bring out the blame in a parent. I'm always wondering if I'm doing enough, if I have done enough. I still struggle with being "Good Enough" even though I know my definition of good enough is doing all things, everything perfect which is both crazy and impossible.

12. Gaining the ability to love without expecting anything.
Grade A
My love for my children is unconditional.

A Gift of Calm - enjoy!

I don't know about any of you, but in my world if I didn't make it my business to find joy every day I'd go crazy. Not tiny crazy, we’re talking yelling, manic or comatose in a corner curled up in a fetal position type crazy. Hence, I'm highly motivated to find joy! To make sure I do, I keep my bar low. I start by being thankful I woke up on the right side of the dirt! Then I look for joy in the things that are always here, things I can always rely on. For me it's the sky. I take pictures from planes, on hikes, laying down flat on my back looking up.  I love the sky, I love how it’s never the same and it's always there for me!  


I took these pictures on my cell phone while hiking in a nearby canyon, with Nick. I use them as screen savers and they calm me. Maybe they will do the same for you. Feel free to snatch one or all if you're so inclined.








Telling Single Moms They Are Fathers Too Doesn't Help Our Daughters or the Absent Dad Crisis!

I am a mom who does all the parenting. I am not alone I am just like 86% of the divorced parents raising children with ASD.  Yes, my friends and others say “Happy Father’s Day, Mom!”  For years I thought wow it’s true, I’m both parents so this is my day too.  Then I thought maybe we should just have a parent’s day.  Why not have a day dedicated to celebrating anyone who parents and traditional roles be damned!  If you parent, you get recognized. I mean, isn't it the constant delivery of love, guidance and support we give our kids that’s being celebrated and not so much who gave it?  I used to think so, but not anymore.

This year, I changed her mind. Although a well intentioned gesture, it hit me that telling single moms we are fathers too does not help the crisis so many of us single moms are no left in, and it doesn't encourage men to step in and step up. As much as this hardworking mother found it had to accept at first, I don't think Father’s Day is not for single mothers. This day is designed for the men who embrace their roles as dads. Dads who stay, dads who make a difference need to be celebrated, and if there are fewer men showing up to be counted, so be it.  The truth is there are great men out there, who are dedicated dads or granddads and our children need to know they exist. As a mom, I owe it to my son and especially my daughter to teach her, that no matter her father’s choices, there are good men in the world instead of me unintentionally teaching her to expect so little.  

So next year - instead of minimizing the holiday, crying about my absent dad , and my children’s absent dad – I’m going to find a place where my children can watch a dedicated dad in action.  If I can’t find a family open to sharing their dad on this special day I’ll find a strong man who is loving and able to show my kids that men can be wonderful.  That's the reality I want my children to believe in. :) 

Education: Solution for Kids with C's, D's and F's

Business Insider Video
Arianna Huffington is a strong advocate of 
a good night's sleep.
Sleep has always been a challenge for Nick. So much 
so that we have a routine, which includes this 15 year 
old going to bed by 8:30. This is to insure he gets 
enough sleep, putting him in a category where he wins

over most teens. Wish I could have gotten my daughter
to sleep as much.  Oh, well don't expect sleep will 
improve his grades but it sure improves his behavior!  
And there's an added benefit, when he sleeps I sleep 
and I'm positive it improves my behavior! I remember
reading studies that determined the school schedules we
currently have for teens are unhealthy and set them up 
to fail, and this story seems to support that theory. 



Healthy sleeping habits are linked to better grades.


Turns out that all-nighter probably isn't worth your time. The cost of sleep deprivation is greater than the knowledge you might gain from studying.
Research shows that the less high school students sleep, the worse they tend to perform in class and on assessments. According to one study, students who receive C's, D's, and F's in school get on average 25 fewer minutes of sleep than A- and B-students.

News Alert: Knowledge about ASD Grows by Leaps and Bounds

Knowledge about ASD Grows by Leaps and Bounds

Before.....
“Progress is good. I am grateful for all of it. I just wish I could know something will happen in time to help Nicky.  I dream of a Nick complete 
with the wonders of his autism that make him unique; his humor, his honesty his total inability to hold 
grudge or harbor bad feelings for anyone or anything, 
less the major challenges that make so much of life unavailable to him. That’s what I want to see!  
I pray it will happen in our lifetime. 
I pray it will happen in yours”
Donna




Knowledge about ASD Grows by Leaps and BoundsResearch on autism spectrum disorder (ASD) is still in its infancy, but scientific knowledge  is documented as growing in leaps and bounds.

The Harvard Review of Psychiatry published summaries on Tuesday of the most recent findings in ASD research. The journal contains six articles, all of which review the latest studies from the past few years. While the reviews are for professional use by clinicians who work with patients, they offer a glimpse into the state of autism studies today, and cover issues like genetics, medication and how people on the autism spectrum should prepare for college. The articles will all be available on the Harvard Review of Psychiatry website and I’ll make it easy by posting them one day at a time!  

Vocational Opportunities; Maybe our kids can solve the most common problems???

I'm convinced my Tupperware lids and socks belong to a secret society that calls upon them to hook up and run off together...all the while laughing at me!

This comic crawled into my twisted brain got me thinking...maybe vocational opportunities lay in the old adage "Necessity is the mother of invention." maybe instead of just working my way down my list of typical household tasks and chores I should expand my thinking - leap out of the box - and focus on finding new ways to apply my son's strengths to solve problems in our home that might translate into bigger opportunities for our kids, maybe the creation of new services, new companies and maybe even the extinction of Tupperware trauma! I'm just sayin...LOL.

Autism and Thanksgiving; The Usual Blessings and More!

 I'm thankful for all the things that didn't happen....
like him getting the turkey and putting it on his head!
With his love of animals I could see this..LOL.Yikes!!!
Every Thanksgiving I'm thankful for all the things that make my life, my life! I give thanks for my family, my friends, my health, my home, my work, my body (and every part that works), my thoughts, my hopes, my spiritual family, my dreams, the gift of food, a home, a car, the air I breath the wonders of the world that surround me, the challenges that made me who I am, and the smiles shared with me on any given day. Then there's the new things I am thankful for that have grown from this life, living with autism.

I'm grateful that .....

  • Nick could eat more than potatoes. 
  • My kid's didn't spend the day fighting. 
  • Nick is able to live at home. 
  • He's learned to control his aggression.
  • I'm not worried ever second he might accidentally hurt someone. 
  • He can sit at the table with everyone else.
  • He can sit at the table and chew with his mouth closed.
  • He can manage all the loud sounds that come from putting lot's of people together and not have a melt down.
  • My daughter doesn't let him ruin her day.
  • Nick is following directions. 
  • Autism is no longer the elephant in the room everyone see's and is pretending to ignore.
  • Every moment he's just another member of the family and not the member of the family with autism. 
  • Every moment I'm not worried about making him behave perfectly, so he'll blend in. 
  • After 13 years of living with Autism, I can gather with people and talk about something other than autism!
  • Nick didn't walk by anyone's' plate and take their food (BTDT). 
  • People didn't stare at him... too much. 
  • No one feels the need to make excuses for him anymore. 


I'm grateful he was happy, we are happy.


If You Judge People You Have No Time to Love Them...Mother Teresa


I just learned a teen I've known for a few years, who has ASD, will be leaving his family home and going to live in a group home and I felt an instant and profound sadness. My eyes started to well up and then I asked myself   "Why am I so upset? What I am hearing?".  Then I realized all I could hear was "The family gave up. They couldn't do it anymore and they gave up".  


As soon as I recognized it, I also knew it wasn't true. I don't know their story!, I don't know their life, their family.  For all I know this could be the best possible thing for him, yet that's not where my mind when.  It was quite the revelation that my response was not to ask "Why?" or why my  first thought was were not how painful it must be for the parents, or if the teen had asked for an opportunity to be independent. 

Clearly my reaction was all about me, my fears and my judgement and had nothing to do with the family. Oh, to be a work in progress!


Week 6 Lesson’s from Nicky "Can you define happiness for another person?"

Nick goes one step farther, he doesn't
see the imperfections! 

Can we define happiness for another person?  I’m pretty sure I did, before Nicky opened my eyes. For example I assumed that people with severe disabilities, or special needs didn't, or couldn't live a happy life. I felt sad for their life, a life not at all like mine, a "typical" person.  Now 13 years into my journey with Nicky I see how ignorant I was, and I wonder, as I look at all of us with our typical lives, who's happier? So, I did a little compare and contrast. 

Here's me;  I'm happy I have a wonderful family, and I don't need for anything AND the my life is also full of responsibilities, stress and concerns. Not the least of which is I am good enough and will I have enough. I've worried or stressed about my job, my relationships, my security, taking care of my children, making enough money, wearing the right cloths, saying the right things, staying fit, credit card bills, divorce, being alone, was I polite enough to the person who served my food or helped me check out at the grocery store, cleaning the house, being good at my job, my sisters, my mom and of course the future. I get my feelings hurt, I put meaning to things that happen to me (the old he/she did this because), I carry the baggage of my past with me, and the list goes on. 

Here's Nick He's happy, he doesn't hold any grudges, getting back at someone is a concept totally unknown to him, he is free from the typical humanville baggage that comes from “how we think things should be” he laughs happy hysterical laughter every day at simple things, he's always happy to see people he loves,  he doesn't judge anyone, he loves all of us unconditionally. He gets frustrated about things in the moment has his tantrums and meltdowns, and when he recovers it's over. He's not worried about getting his drivers license, gang violence, drugs, wearing cool cloths, having a hot bod, great hair, saying all the right things or all the peer pressure stuff teens endure.  He seems to have no worries about the future, or distressing thoughts of what people think of him and I kinda doubt that he has any baggage!  Nicky is truly deeply happy and his greatest worry is…will he earn free-time, will he get more French fries and chicken, who will come to work/play with him, when will his sister come home, how can he sneak books, internet, videos or markers, and will today be a day we will let him make a list or go to the zoo or the library.  

I don’t know about you, but when I look at the lists side by side it's obvious he's happy and maybe even happier.  Once again…”I’m just saying J” 

Ten Things NOT To Do In An IEP Meeting!!

My Top 10 IEP "No No's"

I don't know about all of you, but Nick's  first IEP, was also my first IEP and I made mistakes. Since then I've made more, and I've heard about the most common ones other parents make. Here's ten "Not to do's" to help you on your journey.  

1.  Believing the professionals are the only experts.
Although most parents do not have a background or degree in education, but that's not what makes them an expert when it comes to their child. we are the best experts for our kids. We know our children better than anyone. That's the position we have to take and that's the role we have to prepare ourselves to play. It's the knowledge and experience regarding their child not a credential or degree. Parents are experts in their own right; they also provide historical information and the big picture from year to year. They know what works and does not work with their child and can be a great asset to the IEP team.  http://autism2daily.blogspot.com/2011/03/real-autism-experts.html
2.  Not keeping records and making requests in writing.

Just the "Facts" Mam! -  Parents should never underestimate the importance of records.  Communicate in writing send all requests in writing and keep a record of everything! Before Nicky was 3 my records had already been used to get Nicky the proper medical care, diagnosis and successfully challenge the school district to obtain the best school placement for him. "Facts not Feelings" - no matter how right we might be, just saying so is not enough. Proof - not just our conviction - in the form of records of events, outside evaluations, logs of daily activities are our ammunition to fight for our kids. These are the tools of the expert parent. It wasn’t always easy but it’s how I got done what needed to be done.  http://autism2daily.blogspot.com/2008/01/records-will-save-you.html

3.  Not being familiar with Prior Notice of the Procedural Safeguards (34 CFR 300.503)
All sections of the Procedural Safeguards are important to parents. This particular section gives parents some leverage during the IEP meetings. Whenever parents make a request for their child in the IEP meeting, the IEP committee is required under Prior Notice to provide the parents with written notice with a reasonable period of time. The notice must include the following:
  • A description of the action proposed or refused.
  • An explanation of why the agency proposes or refuses to take the action;
  • A description of any other options that the agency considered and the reasons why those options were rejected.;
  • A description of each evaluation procedure, test, record, or report the agency used as a basis for the proposed or refused action;
  • A description of any other factor that is relevant to the agency’s proposal or refusal.
We have found many instances where a parent requests an assessment or service only to have the IEP team tell the parent it cannot be done. By making all requests in writing and by requiring the IEP team to provide Prior Notice, the parents make the team accountable for its decisions. This practice also takes issues out the emotional areas, allowing all team members to focus on IDEA standards.
4.  Requesting a related service instead of an assessment that supports the need for a related service.
It's like everywhere in life, it's not what we think, but what we can prove. That's really not unfair and it helps other team members know we can be trusted and taken seriously when advocating for our child. Many times parents will request services such as speech, occupational therapy, physical therapy, etc. in the IEP meeting, with our support for the need. When the team does not agree on providing a service, go to the next step, request as assessment that supports the need for the related service. Instead of requesting speech for your child request a speech assessment. 

5.  Accepting assessment results that do not recommend the services you think your child needs.
We've all read assessments that just didn't accurately describe our child and/or the right prescription of services. Under 34 CFR 300.352. Independent Educational Evaluation (IEE), parents of a child with a disability have the right to obtain an independent evaluation at public expense if they disagree with the results of the school’s assessment. When the parent requests the IEE (in writing) the school has one of two choices: they may either provide the IEE in a reasonable period of time or they may take the parents to a due process hearing. When an IEE is agreed upon, parent and school must come to an agreement as to who is qualified to assess the student. The examiner for an IEE cannot be employed by the school district . Parents should request the school district’s policy on guidelines and qualification for their examiners.
6.  Allowing the assessment information to be presented for the first time at the IEP meeting.
Parents are entitled to have the assessment information explained to them before the IEP meeting. we encourage parents to have the person who administered the assessment give them a copy of the report and meet with them to explain the report several days before the IEP meeting. This enables the parents to think through the information before making decisions for their child. If all IEP decisions are based on the information from the assessment, it only makes sense for the parents to be knowledgeable and informed about the assessment results in a way they can understand.
7.   Accepting goals and objectives that are not  measurable.
The longest time spent in an IEP should be on the meat of the matter, measurable goals and objectives. This is where we are saying, here's when my child is today and here's where we want him to be next year, and here's out detailed plan on how we are going to get their and measure our progress. THIS is the big stuff, but this is one more place where all IEP teams are not created equal. In school speak these steps are: The student’s present level of performance (PLOP) and states what  the student is currently able to do. The committee then develops the IEP goals and objectives. The goals state what the student is expected to accomplish by the end of the year in ways that anyone can measure how the outcome. Objectives break the goals down into increments. For example for an IEP held in January 15:

  • PLOP
Based on the standardized testing and classroom work, your child is currently able to read on a 7th grade level with 70% mastery.
  • Goals
By the end of the school year your child will be able to read on a 7th grade level as measured by standardized testing and classroom work with 90% mastery.
  • Objectives

By June 15, your child will be able to read on 7th grade level at 80% accuracy with teacher assistance as measured by our standardized tests and classroom work .
By By December 15, your child will be able to read on 7th grade level at 90% accuracy with teacher assistance as measured by our standardized tests and classroom work .
Now that you've written them, stand back and ask yourself, do I really understand this? Can I see my child achieving this? Do I understand what the goal is? Would anyone reading this, who was not in the IEP, understand it a year from now? 
8Allowing placement decisions to be made before IEP goals and objectives are written.
A successful placement needs the input of all the team members and it should be based on PLOP, Goal and Objectives. Many times after assessment is discussed, the IEP committee will determine the child’s placement. Goals and objectives are always written before placement is discussed. To ensure that the child is placed in the Least Restrictive Environment (LRE), the IEP committee must determine: Which of these goals and objectives can best be met in the general classroom?
With any remaining goals and objectives that cannot be met in the general class-room,  the committee determines: Which of these goals and objectives can be best met in the general classroom with modifications and support?
This line of inquiry continues until all placement options have been decided upon for all the goals and objectives. The committee must always start with the LRE and then work toward a more restrictive environment only as necessary. IDEA is very clear that the IEP committee must always consider the general education classroom as the first option for students with disabilities.
9. Allowing your child’s IEP meeting to be  rushed, or ending the IEP before you understand.
Rushed IEP meetings is a practice particularly common at the end of the school year when educators are frantically trying to have IEP meetings for all the students who receive special education services. IEP meetings may be held one right after another. If this is the case, or you just ran out of time do not be intimidated, ask to schedule a time to continue the IEP.  It is important that all issues are adequately addressed before closing out an IEP and signing off. Never let feeling rushed,   keep you from requesting that the IEP team meet again at a more convenient time to further discuss your child’s education.
10. Not asking every question you can think of that relates to you child.
It is very important to ask questions and lots of them. The process, that educators just seem to breeze through, is complicated to master. I spend weeks in advance of my first IEP just trying to learn the acronyms specific to special education, so I could at least try and follow what was happening!  All the terms can make the IEP process confusing and frustrating causing the most  brilliant parent to feel pushed out of the conversation before it begins. Here's the truth, we are not expected to know all the terms and acronyms, but we are expected to ask, so ASK!

 

Warning - Hidden Messages in Teen Clothing!!!!!

Boy was I humiliated!!!  I'm the mom who says "If  you don't know where a word or phase came from, don't use it!"  Just because people are saying it all the time, and the kids say it, doesn't mean you want to say it.  I do the homework".  That's how I learned that the whole low pants trend on men started in prison  (it's a myth that it has anything to do with sex, and gay men...but enough of society thinks it's true, it might as well be) and it's not a look I'm encouraging for my black male child!  Then there's the popular phrases "It sucks" and "That's tight" if you guess they originated as sexual terms...you're right!

So why would a mom paying so much attention get a call from school saying "Do you know what Nick's shirt means? Do you know what a Cleveland Steamer is?" A girl came up to Nick's aid and said "You're kidding right", that's a joke?" All I could say was what do you mean? He's wearing his red Cleveland Steamers shirt, it's a baseball shirt.  I was part right. But the WRONG part was massive!!!! The back of the shirt said "Tenacious D, 6666". it looked like team players name and number.NOT!! I know some of you are already gasping and laughing hysterically because you were in on the joke, you know Jack Black, but it's no doubt a 20 something reference far of the radar any one over 40 something and special needs kiddo's, and a slew of other not so hip folks.  It's so funky and gross I'm not going to spell it out, if you want to know ask a 20/30 something or look it up...and warning, be prepared for a major OMG moment!

That said, I'm sure they made more than one of these, so heads up! 

Why are Parents Afraid of the "IEP"

I was going over papers, talking to the school nurse and Nick's teacher in preparation for my son's Tri-annual IEP last week, when I was asked "You seem anxious, what's an IEP?"  I'm so used to being anxious I didn't notice, but she was right. Before I knew it I was telling her this story.  

IEP stands for Individual Education Plan and it strikes fear in the hearts of many parents. The terms Tri-annual IEP and Transition IEP can be even more anxiety provoking because experts - which can include people you and your child have never met - evaluate your child  to provide critical information that is used to determine services. IEP's are created in meetings where a students educational team and parents come together to review a students individualized educational needs to determine what has worked, what's not working and what would be best moving forward. It sounds good and sometimes it does goes well. Sometimes the entire team agrees on a plan of class's, transportation, supports and services to move a student forward.

"Why are parents anxious about IEP's; in short how would you feel knowing that the success of a critical part of your life or your child's was going to be decided by a committee, which may include strangers, on an annual basis? Hummm, I'm just sayin :)."

Parents are afraid of IEP meeting because they offer up a frightening annual opportunity to learn how many different opinions a group of adults can  have about what best serves a child.  All the education support services a student will keep, gain and loose in the next school year are at the mercy of the the IEP participants, who may or may not know anything about your child. From diagnosis (which determines eligibility for services), school placement, educational goals, classroom placement, behavior plants, behavior support, speech, OT, APT, behavior plans, transportation, are all of the table for renegotiation once a year! Not hard to see why parents feel a little anxiety around the process!

IEP's always have an element of the unknown, as different agendas, levels of knowledge, belief systems come into play and in the event of a disagreement the school districts typically have more resources to gain the upper hand in a dispute. Visions of David and Golliath have been known to come to mind for many a parent. For example; two weeks before one of Nicky's IEPs, an aid told me "People have visited his class from the district and one told me they were trying to see if Nicky no longer needed a behaviorist because he had good grades". Yikes, there went any calm I was holding on to!!! Really, good grades??. If this statement was accurate or not - which I will never know - it is an example of what happens in schools and our communities when people, even teachers and principles, have deep misconceptions about autism. There is still a great deal of confusion about behavior and intelligence in people diagnosed with ASD. For example some people think a person with autism who has normal intelligence can rely on their intellect to turn off and on any inappropriate behaviors they have associated with their diagnosis, or that autism does not mean unable to learn. Or in this case,  when behaviors improve due to intervention, and the success of behavior intervention is not necessarily proof that the support is no longer needed, rather it's probably proof that is is needed and working!





Happy Birthday to Me :)


Happy Birthday to me and to all the other April babies out there! Gave myself the best present ever :). After I put Nicky on the school bus instead of my usual am routine of work, cleaning, etc. I....drum roll.....WENT BACK TO BED, and feeling guilt free I fell promptly asleep.  Oh yes, this is a great day. 

P.S: It's Nicky's birthday this weekend and he'll be having is very first "Surprise" Birthday Party. It's gonna be great. 
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