IEP - Incredible Exasperating Process

An IEP, Individualized Education Plan, is a parent's greatest weapon and worst nightmare. It offers hope and a plan, but it more often offers sleepless nights and anxiety attacks.  As a member of various Autism support groups - the two subjects that seem to create the most buzz are vaccines and IEPs. While I believe a vaccine discussion is tantamount to war, IEPs seem to bring everyone together with various experience, advice, information, and commiseration.

It is baffling to me that a tool that was created and regulated by the Federal government to offer an equal opportunity education to all children is now becoming an excuse by education administrators to fail these same children. Each state and each school district is permitted to determine how they apply the guidelines and how they designate a child's disability. In certain instances, they have little power such as obvious physical impairments. But for children with ASD, there is so much wiggle room that the schools are able to maneuver around the proper designation.

As an example, I offer my 6 year old son, Zack. He was medically diagnosed with Autism, actually PDD-NOS, when he was just turning 3. He was placed in a head start preschool program at our local elementary school with an amazing teacher who is also a special education teacher. His designation on his IEP was "preschooler with a disability" as this was the only designation available for a child his age. He was offered and received services for speech, behavior, and OT. All perfect for his needs. For two years of preschool and then kindergarten, Zack received all of these services under his original designation and made tremendous progress. Then came the mandatory 3 year redetermination. What a nightmare!

We filled out a TON of questionnaires, he was evaluated by his therapists and then we met with the school psychologist. Because the DSM was changed, and everyone is now grouped under ASD, the state and district changed their guidelines to closely match. The psychologist decided to re-diagnose Zack as having social communication disorder and therefore try to change his services. She simply did not care that he had a medical diagnosis nor did she care that we could offer many examples of how he meets the educational diagnosis for ASD. It was during this very difficult and tortured time that I learned a few important lessons.

Lesson 1 - Know your parental rights in the IEP process! They are required to provide you with a copy of these rights at every new IEP meeting. READ this document every time it's offered!

Lesson 2 - Learn and understand the educational diagnosis requirements for your state and school district. Google it! Spend the time to be an expert! The schools will expect to know more than you, don't let that happen.

Lesson 3 - Don't get bullied! Unfortunately, there are people in the educational system that will try to bully you in this process. Whatever else you take from this, remember this one thing - an IEP is a TEAM effort! You are a valuable part of this team and ultimately the TEAM must agree on what goes in the IEP.

Lesson 4 - Don't be afraid to advocate and fight for what you believe and want for your child. You are always going to be the biggest and best advocate for your child.

Lesson 5 - Remember what is most important. The ultimate goal of an IEP is to provide the proper support and services. The designation is important, however it isn't the most important thing.

Do not be intimidated by this process. If you follow my lead, and heed the lessons I have listed, you will be empowered to provide the educational experience your child deserves. This might be a smooth process or it might cause you angst, tears, and frustration. Either way, if you are armed with the proper information and attitude, you will be victorious!

Good luck and know that you are not alone. Feel free to follow me, message me, or provide feedback about your own personal experiences. We are only a community if we work together to empower one another.

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I Could Not Help But Cry

So many different responsibilities come with raising an autistic child.  Never mind the standard responsibilities that every parent has with any child.  Added to that are the special requirements for parenting this amazing, special, and unique blessing.  Unfortunately, there isn't a guide or manual that comes with these kiddos.  They come into this world completely dependent upon us, just like every other child we have.  Somewhere along the way, we realize that they are different.  Something just isn't quite right.

At first, you rationalize that every child is different.  I know for me, after already having 4 kids, when my son Zack wasn't hitting all his milestones (some he did), I just told myself "He will, in his own time."  I had learned that all kids progress and develop at a different pace.  Having twins definitely helped me see that.  So with Zack, I simply assumed he was just asserting his uniqueness.

Eventually, you KNOW something is different.  Then you start asking family, friends, people you trust.  I heard plenty of reassurances.  Many the same ones I had been telling myself.  One of the glaring aspects of my suspicions was that my baby didn't talk.  He was almost 2 years old and he still didn't say his first word.  Lots of babble, something we called Zackenese, and lots of grunting, but not one single ACTUAL word.  When I would mention this, I almost always heard the same thing - "Boys are slower to talk."  Now I'm not sure where that can be proven scientifically.  I have other sons and this certainly wasn't an issue for them.  So, even after stepping out of my comfort zone and admitting out loud there might be something wrong, the reassurances I received from well meaning people simply left me feeling alone and worried.  Yet, I did not cry.

At Zack's 2 year check up, we mentioned to our pediatrician that we were concerned that he wasn't talking.  She was wonderful about addressing our concerns.  As we talked with her, we realized there were many characteristics about Zack that were a bit different.  He was a very very picky eater, he abhored riding in the car, he would watch the same show or play with the same toy endlessly.  At that time, he loved Barney.  We had a few VHS tapes, so he was able to watch a small variety of Barney as often as he wanted.  One day, we bought a new Barney video.  Well, it had some different kids in it than the ones he already had.  He cried for two hours.  It was a meltdown - although I didn't realize it at the time.  So, as we discussed all of these things with Zack's doctor, she decided he should be evaluated by a team of people who specialized in this sort of thing.  Yet, I did not cry.

After his evaluation, he was given a medical diagnosis of autism, enrolled in the head start preschool program (in which he would start when he was 3 years old), and given a speech therapist and a behavioral therapist.  It was overwhelming!  My instinct was to protect my baby.  My husband and I fired the first behavioralist because she sent him into a meltdown within 5 minutes of being in our home.  We researched autism, we struggled with rigidity, and we looked for a reason WHY.  Yet, I did not cry.

Zack attended preschool at our neighborhood elementary school and had the MOST AMAZING teacher.  For two years, he received his schooling and therapies from 3 amazing women.  He started gaining words, socializing, and being affectionate.  He went from refusing to participate to leading his class every day.  While his speech was still miles behind, he could finally advocate for himself to get his needs met.  As his two years came to an end, even though he would attend Kindergarten at this same school (mainstream with support), we were devastated to leave his teacher.  As we expressed to her our love and gratitude for all that she had given Zack, I FINALLY cried.  This beautiful amazing woman had found my child inside of himself, and helped him to be a part of the outside world.   She gave him speech, confidence, friendships, love, and acceptance.  As I tried to express to her the magnitude of my thankfulness, all I could do was cry.  I cried for my bottled up fears, I cried for the uncertain future, but mostly I cried because she gave me my son.  At the end of it all, I could not help but to cry.

Because of his teacher, along with his therapists, I had hope.  It is still an uphill climb - but everyday I see a small improvement that sustains me.  We would have none of this if not for his first teacher.

Thank You Mrs. Barrios!

Autistic? You're Just Not Doing It Right

I do not pretend to know all the answers.  I hardly know any, if I'm to tell the truth.  I have woken up everyday for the last 5 years still searching for some kind of answer to this crazy thing we call Autism.  Let me just break it to you now - there is not an answer.  At least not one answer that explains who, what, where, and most importantly why.

Thank goodness for all the experts of the world who are constantly researching and trying to find out the cause, the cure, the ANSWER.  I don't actually find them helpful for the most part, but I do applaud their efforts.  Yet somehow, perhaps because of a need to feel self-important, they all seem to think their opinion is the right one.  I just don't understand that.

I have watched lectures and read articles for hundreds of hours trying to get a handle on my son being autistic.  I am much more knowledgeable about what being on the spectrum means.  I have certainly honed my detective skills to weed out the snake oil salesman.  But at the end of it all, whatever expert opinion is being shoved at me - their message is clear:  "If you're not doing it my way - You're Just Not Doing It Right."

Now these people don't know my son.  They try to lump him into a category on the spectrum.  They don't know how smart he is or that he has a wicked sense of humor.  They have never watched him struggle to say what he is thinking.  Nor do they know how much he loves to be cuddled in the morning.  So how in the world do they know I'm not doing it right?

That leads me to the other experts in our lives - our friends and family.  Now these people actually know us, they know our children.  They are our biggest supporters and our very worst critics.  These experts are the ones I dread the most.  Their words, looks, and whispers always cut deep.  "You just need to teach him who the boss is."  "You can't let him throw a tantrum when he doesn't get his way." "You need to teach him to not say hurtful things." "You need to make him eat what is on his plate.  If he is hungry enough, he will eat."  And the list goes on and on.

Sure these people have nothing but the best intentions.  They love us and our children. But their expert advice only resonates as "You're Just Not Doing It Right."  Their shock and horror when they find out he's 4 and still won't go number 2 in the bathroom - its humiliating.  Every time someone starts a sentence with "You just need to...." I cringe.

The worst thing anyone has ever said to me was "If only you didn't feed him gluten, he wouldn't be autistic."  As if I really gave my son autism by not feeding him right.  This is the insanity that we live in.  One million experts walking around in our lives and none of them know the first thing about autism.  They simply think Rain Man.

So here is my EXPERT advice - you are the expert of your child.  You can have advisers such as doctors, teachers, therapists, etc.  But at the end of it all, you are the one true expert of that fantastic child who needs you, loves you, and depends on you each and every day.  Whether you choose gluten free diets, medication, prayer, therapies, nutrition or whatever - YOU ARE DOING IT RIGHT!  Find what works for your kiddo.  You are the only one who knows what works and what doesn't work.  Look outside the box, explore different therapies, different nutritional options, different schools.  There is not ONE answer that fits all of our kids.

And each and every time someone tells you "You're Just Not Doing It Right", look at the miracle you created, the wonderful unique child who thinks you hung the moon and the stars just for him, and then you will know that you really are doing it right.

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