Jack doesn’t fit the mold. Not the mold for a typical kid, not the one for cerebral palsy, not autism, not ADHD. Whenever we try to "box him up", another piece of him pops out, unexplainable by a typical convention. I like it that way. I know I didn’t fit into the parameters that were set up for me as a kid, and I do my best to keep growing and changing so I can steer clear of the typical; “what I am supposed to do.”
The problem with being outside of the norms is that other people don’t always know how to handle you, or help you, or befriend you, or teach you, or be your doctor, or your therapist. People become exasperated, they assume less of you, they ignore you.
And some of that might happen out in the big bad world, but my son isn’t having that experience at school, not ever. We are so lucky because we have a group of professionals that really does get my kid. Sitting in his IEP listening to one educator talk to a therapist about Jack it was clear to me that they really understand that Jack is an individual, not just a kid with a label, or a few labels. They are constantly looking for ways to motivate him, engage him, and teach him.
I love that the expectation is that he has an opinion, wants to learn, and we just haven’t figured out all the best ways to help him communicate. It is comforting to know that they meet him where he is, but demand much of him. And it is a relief to have my suggestions interwoven into his educational plan so that we are creating goals for Jack that will move him forward at home and at school.
No one is cutting and pasting goals from another kid’s IEP to fill in the blanks for Jack’s 60+ page plan. We have all agreed that Jack is not going to perform the same task (finding his name out of a group of words) ten times in a row just to prove to you he can do it. He might do it twice, and one extra time for a new aide, but after that we know he’s not going to play your boring game. So we’re trying some new things this year. My favorite new thing is that I’m making a list of facts that Jack should know about our family, our life, and our community. The teachers will have this information, and using icons, pictures or words, will be able to ask questions that Jack will be able to answer. And once we can all agree on his level of knowledge there, with known facts, well, maybe we can move on to teaching him information, then quizzing him on that information: Are there sharks in the San Francisco Bay? What is at the Earth’s core? He loves science shows at home, so we are going to build on that.
As different as Jack is from how I was growing up, he is still my kid, and he’s my husband’s kid; he’s our genetics, and my husband and I have always wanted to know the answer… to everything. I want to make sure that we are giving Jack every opportunity to learn about things he is interested in, even if he’s not “talking” about it, or writing a book report. We need to provide him access to information that he just can’t get to by himself. And I am thankful that there is a team of people who are looking for every way to feed that brain of his.
I panic any time I see the number from Jack’s school flash across on my phone screen, so when they called the other day and I missed the call, I didn’t even bother to check the voicemail and called back the front office directly. I was greeted with “it’s not an emergency.” I love that his school knows that is my first concern. The next thing I heard was,
“It’s time to schedule Jack’s IEP.”
In the past, hearing that phrase would have made me panic too, and living in a state with lots of budget cuts and schools that are trying to save money in every way, it does still set me thinking about how we are going to meet Jack’s educational needs. I know lots of families that spend hours and hours and have lawyers and have been through litigation to get their children the therapies and services they need. There were a couple of years, before we got things right, that I felt like just getting people to show up at the IEP was going to be the break down of the process, but over the years I feel like things have gotten somewhat easier. It’s always been clear that Jack had significant needs, which means there has always been discussion as to “how much” rather than "if" when we spoke about services. I know there are some people whose needs are less obvious (but no less significant) who have a harder time trying to get the help they need to get access to education. We have a great team in place at the school district, and Jack’s teacher is thoughtful, caring, and above all, interested in educating my son.
IEPs are still emotional for me though. As each educational professional goes through Jack’s deficits, and attempts to clarify what we need to focus on in the coming year, I must remind myself that numbers do not make up my son; that his low scores on a test do not indicate his worth. There aren’t any exams in our educational system that value or rate his earnest desires, or how he enjoys the water, or loves his family.
Last year I noted that there was a subtle difference in how Jack’s test scores and evaluations were reported. Before each summary, nearly every educator prefaced their conclusions with a comment about what they did know to be true about Jack, something that was relevant to the subject, but untestable. Someone mentioned his great sense of humor, someone else talked about how he loves to be outside, and that he taps his fingers in time to the music-- he has friends at school, and he wants to know who the heck the new aide is in the class. They talked about the child who showed up to take those tests...the punky, teasing kid, the one who lets you know when he needs a break by slowly dropping each piece of the testing materials on the floor, or by stealing your pencil.
They spoke about Jack by name. They spoke about him respectfully, like he was in the room (he hasn’t sat in an IEP yet, something we are talking about now…) It makes it so much easier for me to set goals, approve services, and attend to the meeting when I think that the conversation is really about my son, and not just about getting through some paperwork. It’s still all business at the end of the meeting with signatures and copies of everything, but before that, it really feels like we are talking about the best way to provide my kid access to education, and for that I am so very grateful…
Easter is this week so many of us will have extra Easter eggs around the house. Put them to good use by making this fun listening game.
This "Match the Sound" game helps children listen carefully and pick out differences in the sounds. The children in my classes have always enjoyed playing it. It can get messy if they open the eggs quickly. So be prepared!
I talk a lot about community. It's important to have people around you who 'get' what your life is like, who understand how exciting it is to schedule that neurology appointment after 6 months of waiting, people who know the acronyms that float around your head, like IEP, CCS, CP, ADHD. And if you can't find the community you need, build it--at least that's what I did with some great people in our school district.
We created a special education PTA that encompasses our entire district, K-8. Most PTAs are associated with only one school, but that left each of us wanting to connect with more than the 7-10 other families. It can be hard to get together a group of parents who have kids with special needs, by definition it can be harder to find childcare for kids like ours, and with health issues and medical worries, just having enough sleep is hard for a lot of families. I know there's been more than one time when sleeping seemed like a lot better idea than going to a meeting, but I always feel so recharged after spending time with this group.
We try to make our events as friendly as possible by hiring trained babysitters to watch kids during our meetings, and by having lots of snacks and activities for the kids that are there. Whatever we can do to support parents and get them into a group where there are other families with similar lives, whatever effort we make, it is the right thing to do. It is a lot of effort to get everything coordinated with room rentals and refreshment purchase, lining up the sitter, and that's all after we've determined an agenda and set up a speaker. But that hard work has paid off; we are in our fifth year of putting together programs for parents, offering a support group, and engaging children in a great inclusive art program.
We've grown a lot as individuals and as a group. We've figured out our focus for how we support the school district: technology. Last year we purchased more than 10 iPads for special education classrooms. This month we put on an iPad workshop for parents and professionals. We are making a difference in our school district.
We're trying something new this year, a casual evening of wine, food, and art with a silent auction. It's exciting to see our fledgling group of 6 or 7 parents grow into a self-sustaining PTA able to put on such a fantastic event. If you are interested in attending this casual, festive evening you can still buy tickets here for the Saturday event.
It's amazing how much our small group can accomplish. We are determined, of course, but truly the power of putting our heads together.. with that many smarts and our strong passion for our chidlren, I think there's very little we couldn't accomplish if we wanted to.
Did you catch Jake Barnett's remarkable story on 60 Minutes?
Just before his second birthday, Jake stropped speaking and making eye contact. Concerned, his parents consulted doctors, and Jake was diagnosed with autism. The typical motley of therapies followed.
"We realized that Jacob was not happy unless he was doing something he loved," said Jake's mom Kristine Barnett during her interview with 60 Minutes.
When Jake was 3, his parents noticed that he had a particular affinity for science and math. She says that Jake also began to communicate more when he was allowed to focus on subjects he loved.
"You could just see him relax. You could just see him feel like, 'Thank goodness we're not working on something I can't do today,'" she explained.
In kindergarten, Jake was bored with the convention curriculum, requesting to learn algebra instead. By the time Jake was in 8, his parents came to the conclusion that third grade was not going to be enough, and Jake began auditing classes at the joint Indiana University Purdue campus.
Joanne Ruthsatz, a psychology professor at Ohio State who has studied child prodigies for the last 13 years, noted that Jack's incredible memory is a key component to his autistic savant skill. She said that Jake's talent is about one in 10 million.
Jake said that he's proud of his autism. "That, I believe, is the reason why I am in college and I am so successful," Jake told 60 Minutes.
Today 13-year-old Jake has a full scholarship and is an honors student in math and physics at the same campus where he audited night classes. His goals include building on Einstein's theory of relativity and helping bring an end to "that whole math phobia thing" for others.
His parents have started Jacob's Place, a nonprofit center to help autistic children.
Did you watch the story? Do you think that stories like this are helpful or hurtful to the autism community at large? Does Jake's story inspire hope for your own children? Share your reactions and thoughts below!
The benefits of music are endless but they are especially wonderful to growing and developing children with or without special needs. Our bodies are musical: our heartbeat and pulse, our breathing in and out and other physical cycles. We are primed to respond to rhythm.
Music has the ability to fill us with energy and really get us moving which is great for those who are undersensitive and need extra stimulation or for those who have been sitting in school all day.
On the other side, music can calm us down and relax us which is great for those with ADHD, Asperger's and those in pain or stress.
Music helps us express our emotions even when words fail us. There is nothing like banging on a drum when angry, dancing with a scarf when happy or swaying to a lullaby when tired or scared. So, for children who have a hard time expressing themselves, music becomes their language.
Studies show music creates new neurological paths in the brain, stimulating our brains and therefore making us smarter. Most of us have heard of the Mozart Effect where children get smarter from listening to Mozart because his music matches our brainwaves. This may be true but what is more stimulating is when children actually make music. The music they create can be as simple as singing or tapping out the rhythm on their knees but those acts strengthen the brain and create knew pathways for neurons to travel.
Playing an instrument helps develop eye-hand coordination as well as confidence and great self-esteem. It also develops discipline as the student practices and realizes a goal.
Music is also a vehicle to learning other subjects. Practically every child learns the alphabet by singing the ABC Song. There are numerous songs to learn colors, numbers, adding, subtracting, geography and other important facts.
There is amazing potential for development and progress when music is used in our children's therapeutic and scholastic programs. As parents and teachers, we need to expose our children to music in all kinds of situations. And continue to encourage them to explore and make music on their own.
Joaquin has his first official day of full inclusion preschool tomorrow morning at 8:30am and I'm a nervous wreck. We have been looking forward to this day since he turned 3 in February. This is what we have always wanted for him...to have the same preschool experience that any typical child would have. The same that his brothers had at this age. Joaquin is social, easy going, very flexible, enjoys learning and loves people so why am I nervous?
Well, I wasn't nervous until I went to the "meet the teacher" day on Tuesday. I was greeted warmly by the teachers and everyone was very excited to see Joaquin. The teachers (all 3 of them) said they have been looking forward to Joaquin attending the preschool. I picked up the preschool newsletter and the calendar of activities planned and made sure that Joaquin would be on the roster and we happily went home. I eagerly sat down to read through all the paperwork, so thrilled for Joaquin, and then it hit me. I read that one of the first activities next week is to bring in a photograph of your family to share with the class. Oh my gosh. How is Joaquin going to share with the class? He can't talk. It hit me. I mean sure, he can identify each of us in the photograph with prompting and I'm sure he will smile and point at his family members but that's about it. Typical three year olds talk. Some talk A LOT. But I'm certain every child in that room will be able to talk about their family. Joaquin won't. I get teary eyed just thinking about it.
I know I'm doing the right thing. I know Joaquin will learn best from his typical peers and he will learn best to TALK from his typical talkative peers. But it's still hard and it hits you.
Deep breaths as we cross this bridge into new territory. Typical peers. Peers where the difference in abilities will be VERY evident. Painful at times. But it's the best for Joaquin because this is REAL life. Not the safety bubble that special ed provides. Special Ed has a place and a time but I see now how easy it would be to crawl back to the safety net of it. BRAVE. Must be brave. Joaquin deserves this opportunity and I'm certain he will handle it WAY better than I will. Deep breaths.
What a great reminder for us all: Think before you speak!
As we head into a new school year, filled with parent-teacher meetings, playground and playgroup socialization, IEP and PTA meetings, after-school activities that run that gamut, and more, I can't help but think that we'd all (students, their friends and siblings, parents, teachers, educators, administrators....) have more honest, more efficient and better communication if we followed these simple rules...
Is what you're saying... True? Helpful? Inspiring? Necessary? Kind?
Save and print this image: click the image above, when a larger image pops up on your screen, right click it and click save. Open your favorite photo editor and hit print.
Post it on your fridge, tape it up in the classroom, hang it in your chid's room, use it as a bookmark... Where ever this gentle reminder is needed!
Gleeks across the country watched Glee's Jane Lynch and Lauren Potter on PSA called "Not Acceptable" that has recently become an internet sensation -- in less than 20 days the YouTube PSA has gone viral, racking up over 600,000 views.
"It is not acceptable to call me a 'retard' or to call your friends 'retarded' when they do something foolish," says Lauren, who wears the cheerleading uniform of her character, Becky Jackson. Jane adds, "The R-word is the same as every minority slur. Treat it that way, and don't use it."
"Not Acceptable" is a powerful 30-seconds, a call to action to stop using the word and to promote the acceptance and inclusion of people with intellectual and developmental disabilities. It is part of End the Word's ongoing campaign, spreading the word to end the word. According to End the Wor'ds website r-word.org, "Not Acceptable" has been previewed by and received support from multiple advocacy organizations including the Anti-Defamation League, Special Olympics, GLAAD, Best Buddies, Hispanic Federation, National Puerto Rican Coalition, Asian American Federation, AbilityPath.org and the NAACP. Additionally, End the Word is supported by Special Olympics, Best Buddies and more than 200 other organizations around the world.
Head to r-word.org to pledge elimination of the R-word and promotion of the inclusion of people with intellectual disabilities. The website is also full of resources, information, news and ideas.
What are your thoughts on the PSA? What are your thoughts on the use of the R-word?
You think your child has Attention Deficit Hyperactivity Disorder (ADHD) or a learning disability… Now what? Did you know that federal law (IDEA) requires public schools to provide every student a “free and appropriate” education in the “least restrictive environment.” That's the good news. The bad news is that it’s not always easy to get schools to do that. Here’s a step-by-step process to ensure that your child gets what he needs.
1. Get an accurate diagnosis:
If your child is struggling, the school may ask for permission to perform an evaluation, but you shouldn’t wait for them to do so. You can initiate an evaluation by calling the school to request one. If the school refuses, or if you disagree with the school’s findings, you can obtain an independent evaluation to document your child’s need for special education services. (Depending on the situation, the school may have to pay for the independent evaluation.)
2. Meet with the evaluation team:
A multidisciplinary team consisting of the parent, a classroom teacher, special-ed teachers, and others will meet to determine your child’s eligibility for special-ed services, and how those services will be provided. If the team decides your child does not need Special Ed, the process stops. If you disagree, you can appeal your case in a “due process” hearing.
3. Decide which laws are applicable:
Two federal laws provide for free, public special education services: the Individuals with Disabilities in Education Act (IDEA) and Section 504 of the Federal Rehabilitation Act. IDEA covers kids with very specific conditions, including mental retardation, emotional disturbances, hearing impairments, and speech and language difficulties. Kids may qualify for coverage if they frequently have one of these problems in addition to attention deficit. Some qualify under another IDEA category: “Other Health Impairments.” Their ADHD is so severe that they’re unable to learn in a regular classroom. Section 504 covers ADHD kids who don’t qualify for Special-Ed services under IDEA but who need extra help in the classroom. The law prohibits schools from discriminating against students because of physical and mental impairments. Just as the school must provide ramps for kids in wheelchairs, it must make modifications (such as preferential seating, extra time on tests, or help with note taking) for kids with brain-based learning barriers.