P.S. 373R Autism Spectrum Disorder Information Site

Before the IEP planning meeting:

• Consider the vision you have for your child for the future as well as for the present year.
• List your child’s strengths, needs, and interests and your major concerns about his or her education.
• Consider how your child’s disability affects his or her education.
• Think about your child’s educational progress. What has been working and what has not?
• Request a written copy of your child’s evaluation results or a meeting with school staff to discuss the evaluation before the IEP meeting. This gives you an opportunity to understand the evaluation before the IEP planning for your child.
• Consider the evaluation results. Do they fit with what you know about your child? Is the evaluation complete and accurate? If you disagree with the school’s evaluation, you may request, in writing, an independent educational evaluation (IEE) at no cost to you. The school must provide the evaluation or show through a due process hearing that its evaluation is appropriate. The results of an IEE must be considered by the team in planning.
• Consider a variety of ways to involve your child in planning his or her IEP, starting at a young age. Self-advocacy skills are important to develop.
• If needed, plan to bring someone with you to the meeting, such as a spouse, relative, friend, or representative from a local disability organization.

At the IEP planning meeting:

• This meeting is very important. You, the school staff, and any other parties attending the meeting will review and discuss information about your child to plan the IEP. It provides an excellent opportunity to ask questions and share important insights about your child, whom you know better than anyone else does. The school needs to know what your child is like at home and in the community, as well as what your child’s interests and activities are.
• Make sure others at the meeting never forget that the meeting is about a real child.
• Share your visions for your child, both short-term and long-term.
• Discuss your child’s strengths and needs and your concerns about your child’s education.
• Remember that diagnostic tests and assessments do not present the total picture.
• When you believe that the teacher and school personnel are doing a good job, tell them so. Praise, when deserved, is a great thing.
• Be a good listener. Ask questions.
• Make sure you understand. If you don’t understand something, ask to have it explained in a way that you can understand.
• Expect that what you know about your child will be used in making decisions.
• Use school data, your child’s progress reports, and other information you know about your child to make decisions.
• Take the proposed IEP document home to review or ask that a copy be sent to you. You probably will not want to agree to a proposed IEP at the end of the meeting. You have 14 calendar days from the time you receive the written IEP to agree or disagree with the program in writing and return it to the school.

After the IEP planning meeting:

• Your child’s IEP must be reviewed at least once a year to determine whether the annual goals have been achieved and to revise the IEP if necessary.
• You must be informed regularly about your child’s progress, at least as often as parents who have children without disabilities are informed about the progress their children are making. You will be informed about whether your child is making progress toward meeting the IEP goals, and whether the progress is enough to reach the goals. If your child is not making adequate progress, an IEP meeting should be held to review the IEP and make needed changes.
• You may request an IEP meeting at any time.

 

If you have a child with autism, then you know that life is NOT like a rollercoaster ride.  It’s more like hanging upside down on a triple corkscrew that makes sudden and surprising stops in shark infested waters, beautiful rolling hills and bustling cities. 

As a parent, a good day in the world of autism might look something like this:

Your daughter wakes up in the morning and happily gets dressed.  She agreeably puts on her shoes and instead of fixating on the entrance picture, she plays with her sibling while she waits for the bus.  Not only does she say goodbye, she gives you a quick wave as the bus pulls away.  On her return from school her communication notebook has glowing reports.  She socialized with a friend, was compliant and did NOT have a meltdown when free time was over.  Like every day, you ask her what she did at school.  Not expecting a response you almost fall on the floor when she tells you she climbed on the monkey bars at recess.  

And you think to yourself…. 

My child is going to be fine.  Sure, she has her struggles but one day she will find a niche for herself in this world.  I mean look at her.  She’s playing with her sibling and even developing social interest with her peers.  Her language has increased dramatically and her communication progresses all the time.   You can’t help but love her.  I’m sure she will always have close relationships in her life.  Perhaps she’ll even get married.  She is so smart that I know she’ll find a job she enjoys.   OK, she might need some job assistance but I’m sure it can be worked out.  Even if she’s not completely independent, we’ll find the perfect setting where she will be happy, have a few friends and get all the support she needs.

But what about the bad days?  These are the days when things don’t run smoothly.  The days where you want to curl up into a ball and hide in a safe place where no one will find you.

As a parent, a bad day in the world of autism might look something like this…

Your daughter wakes up and not only does she refuse to get dressed, she refuses to brush her teeth too.  You calmly lead her to the bathroom while she kicks, screams and lashes out at everything in her path.  At breakfast she dumps her juice into her cereal and then pushes her bowl onto the floor, splattering food everywhere. When the bus arrives, she has a screaming fit and you practically have to drag her to the bus.  On her return from school, her communication notebook recounts a bad day with three major meltdowns.  In addition she refused to write and kept throwing her pen on the floor.  To top it off, the teacher has taken this opportunity to express her recent concerns over your daughter’s lack of comprehension and social language.  You don’t get to finish reading the communication notes because your daughter is hitting her sibling for no apparent reason and you have to intervene.

And you think to yourself…

How is my child ever going to cope in this world?  She can’t express her needs never mind have a conversation.  She has a meltdown over the smallest thing and struggles to regain her composure.  Her language isn’t improving fast enough and her communication skills are way behind.  She is light years behind her peers and her behavior is getting worse.  What’s going to happen to her when she grows up?  There is no way could that she be independent or hold down a job.  Her comprehension simply isn’t good enough.  What if I’m not around?  Who will take care of her?   How will she cope?

What do you do about these bad days?  Here are some strategies that will help you get through.

1.  Forgive Yourself

When your child has autism, your life is not simple.  You’re allowed to have bad days.  You’re allowed to be depressed.  You’re allowed to feel mad.  You’re allowed to run out of patience.  You wouldn’t be human if you didn’t.  Know in your heart that this day does NOT determine your child’s future and say to yourself “Today I will feel gloomy because I choose to.  Tomorrow is a new day”. 

2.  Shoe box Reminders

Keep a shoe box and pack of index cards in the kitchen or living room.  Every time your child does something that makes you smile or if your child demonstrates a new skill, make a quick note and drop it in your shoe box.  Your notes could look something like this “Sarah tried green beans – 9/23/07” and “Sarah behaved beautifully when she got her hair cut today – 9/30/07” and “Sarah made me laugh. I told her I’m so hungry I could eat a horse and she started to cry because she didn’t want horse for dinner – 10/4/07”.  When a bad day hits, sit down with a cup of coffee and read all the notes in your box.  You will laugh, you will cry and I guarantee you will feel a lot better!

3.  Read our articles

I write for you.  Every article is written to help you on your journey with autism.  I don’t need to explain the happiness and frustrations of caring for those on the autism spectrum.  You live it!  You rejoice in the victories and shed tears with the challenges.  When life looks bleak, these articles serve to cheer you up.  They remind you that there is a bright side to autism.  They help your family and friends understand what it means to have autism.  If you’re having a bad day, remember that your child is exactly the same person today as on the glorious days when life is wonderful.

4.  Change your perspective

People with autism are not out to make your life difficult.  They’re struggling to cope in a very confusing world.  We can’t even begin to comprehend the challenges of this population.  It’s wonderful when a typical child concentrates in class but it’s nowhere near the achievement of when a child with autism concentrates in class.  It takes at least twice the amount of effort for the spectrum child who should be applauded and appreciated.  Sometimes when a child is learning a new skill, it requires so much energy they just “can’t keep it together” for the rest of the day.  Increasing the use of visual or written schedules and giving ample warning before transitions will help the child feel more organized.  The child could also be struggling with an event that’s taken place at school or home.  If your child is able to express herself, probe as much as you can.  If your child’s behavior doesn’t improve within a few days, call the school staff or the parents and work together on helping the child.

5.  Take a break

In order to recharge your batteries, you need to take a break.  Many people say “How could I possibly take a break?  Nobody else can take care of my child!”  My answer to this is “Treat it like an emergency”.  You would have to take care of the emergency and leave somebody else to take care of your child.  This could be your family, your friend or a babysitter and while they might not do as good a job, I’m sure your child will get through it. J  Let’s take a minute to define a break.  A BREAK does NOT mean doing all your regular chores, doing homework with your child, making dinner, cleaning up, bathing your child and putting your child to bed.  By this time, you’re totally exhausted but you take a “BREAK” by meeting a friend for coffee.  NO, a BREAK means ABSTAINING from your regular chores!  It means going out of your house and letting somebody else take care of the rest.  Think about it for a second.  What is really going to happen if your child doesn’t eat a balanced meal one night?  Or watches too many videos?  Or doesn’t do homework?  It’s not going to affect your child’s final outcome but it’s going to do wonders for your spirit.  By taking care of yourself you teach your children to do the same.  So pick up the phone and call your family, friends or a babysitter!

6.  Advocating for your child

There is no doubt about it; you are your child’s best advocate.  When you are feeling optimistic, you will root for your child all the way.  You know what your child needs and you ask for it.  However if you are feeling doubtful, you will wonder if others might be correct in their assumptions about your child.  This can affect your attitude and your decisions.  If you’re having a few bad days and have any meetings regarding your child, do whatever you can to reschedule them.  These meetings include meetings with school teachers and staff, meetings to discuss your child’s IEP and meetings regarding your child’s therapy program.  If you are unable to reschedule the meetings, speak less at the meeting than you typically would and ask for a few days to think about any recommendations that come up.

7.  Venting Victory

When we’re upset about something, we like to tell someone.  We call our friends and our family and we vent.  We “blab” it all out, knowing they’ll listen and understand.  Because our loved ones care, they want to make us feel better.  So what do they do?  They commiserate.  They tell us we’re right.  They sympathize.  They empathize.  Its one thing if you’re venting about your boss but quite another when you’re venting about your child.  Although it’s done with the best of intentions, when your friend sympathizes that your child isn’t learning fast enough, it backfires, leaving you feeling ten times worse.  Now I’m not suggesting that you don’t vent.  I’m suggesting that you “manage” your vent.  Let everyone know ahead of time that if you call to vent about your anxiety regarding your child, they should listen to your woes.  It’s totally OK for them to sympathize that you’re having a bad day and feeling down.  We all have our days.  However, ask them to remind you of all the good points about your child.  Qualities and skills they’ve observed or things you’ve pointed out in the past.  Let them tell you again and again if necessary and point out all those things your child does that brings a smile to your face.  The trick is to inform people ahead of time.  When you’re having a good day (hopefully today) pick up the phone and let everyone know how much they will help you by doing this.  I promise you, they’ll be glad to help and you will feel a LOT better on your down days.

Raising a child with autism is not an easy task.  Take comfort that you are not alone.  There are many that share your challenges and complexities of life.  I commend you!  I salute you!  You are doing a phenomenal job!