Ali Edwards Capture life. Create art.

April 12, 2011

Looking Around The Table

Last Tuesday morning Chris and I had a meeting at Simon’s school to discuss the results of his recent re-evaluation for services (a state mandated 3-year eligibility in the area of Autism Spectrum Disorder).

This was a bit different than a regular annual IEP (Individualized Education Program) meeting where we take a look at how he’s been doing and set goals/accommodations for the next year.

Over the last month or so we filled out evaluations (GADS – Gillham Asperger Diagnostic Scale and a parent questionnaire/case history), testing was done at school by the school psychologist (Kaufman Assessment Battery For Children-II and Kaufman Test of Educational Achievement-II), and his teachers also filled out evaluations (GADS – Gillham Asperger Diagnostic Scale).

Around the table at the meeting was the director of Simon’s program, his speech teacher, the regional autism coordinator, the school psychologist, and his third grade teacher.

For two hours we talked about Simon and reviewed a nine-page assessment packet detailing the results of the testing and observations. We laughed, we agreed, we expressed fears, we questioned, we discussed, we giggled at things he does both at home and school, and we shared stories. We celebrated his strengths and brain-stormed ways to help him move forward with his weaknesses.

As I sat, listening and participating and looking around the table, this is the thought that came to mind: I am so thankful for the people sitting around this table. They see lots of kids. They’ve got lots of things on their plates, including attending meetings like this one with parents. They’ve got personal lives and issues. They were all fully present, fully participating, and fully advocating for Simon.

One of my favorite pieces of the assessment came from the “relevant background” section:

“Simon’s teachers note that he is a kind-hearted, conscientious student. He is very sweet and affectionate to those he knows well, he is eager to please, and he is very methodical in his work completion. He enjoys reading and has good memorization of factual information and rules. Simon has a big smile and has excellent fine motor skills. He enjoys talking about family trips and his sister.”

Over the nine-pages there’s a lot of documented challenges for Simon. Without going into details, as a parent there’s a lot of information to get lost in – numbers, averages, recommendations, suggestions, etc.

What I’m simply so thankful for is that the focus of the people around the table was on how we can help Simon continue moving forward – building upon and making the most of his strengths and finding ways to help him gain ground in the other areas.

Comments

  • 51.
    Brigette said…

    WOW! Amazing teachers, Amazing PARENTS and an AMAZING LITTLE BOY.

  • 52.
    Brene said…

    There’s nothing better than to connect with someone who really sees my children – not who they could or should be – but who they are. From their grandparentsparents to many of their teachers, I’m so grateful.

  • 53.
    Christine said…

    Thanks for sharing this with us today. As an educator, I have worked with two autistic students. Both have wonderful families and I remember having a fountain of respect for them. Their involvement in their child’s education made all the difference in the world. Ali, I have the upmost respect for you and Chris for sharing your journey with us and providing insight to other parents (as well as the rest of us) of autistic children.
    BTW if you haven’t seen the movie “Temple Grandin” I highly recommend it. True story that won an Emmy and Golden Globe and is available on DVD.

  • 54.
    Patricia said…

    I just recieved an email from the director of my own sons program today asking for our vision statement for the next 3 years. His meeting is in 3 weeks. He will be 19 and is in a program for chidren/ young adults with Autism. I have done so many of these meetings and I do know how special it is Ali to have people who deeply care for your child. I also know how important it is that they know how hard we work at home with our children. You should be so proud of Simon and yourselves!

  • 55.
    Brooke said…

    At the end of your 5th paragraph I was wondering whether the faculty members of the school system in Australia do this. It’s amazing that so many people would dedicate their time to ensure Simon is on the right track. What a true treasure they are.

  • 56.
    Rhenna said…

    I’m a special education teacher and it fills me with much happiness to hear such wonderful insights from a parent perspective…it makes my heart happy when I hear about people half way across the country doing good things for kids, we are all so very connected! Go Simon! Here’s to his goal setting and accomplishing in the coming years!

  • 57.
    Monica B. said…

    As a public school teacher who sees over 400 kids a week, I want to say how refreshing it is to read POSITIVE about educators and the work we do to meet the needs of EVERY student as best we can each and every day. Thank you for sharing your positive experience and gratitude, Ali. It means so much to know we teachers are appreciated!

  • 58.
    angi bustamante said…

    hi ali,

    i have a third grader who is also autistic and i agree with your sentiments about his support team. They are true advocates for my son and I made sure I expressed my appreciation for their time,effort, support and love… yes,they are more than just educators – they are nurturers.

  • 59.
    Gypsy Chaos said…

    We sat through several years’ IEPs, with my daughter present as well as the rest of the team. She suffered severe traumatic brain injuries, which automatically qualify a student for services. We had the same experience as you, Ali, and others. It helped us as parents to know that there was a safety net of support around our daughter.
    She didn’t like the net very much! After her freshman year she opted to drop the IEP, knowing that she could pick it up whenever she felt the need or any of the team saw the need.

    May Simon and all children with differences that make it much harder for them to ‘fit in’, to learn, to socialize be surrounded by strong networks of support.
    If only. Our children ARE our future. We must invest in them, in many ways.

  • 60.
    Margie S said…

    I live in China. I have three boys. One with a learning challenge just diagnosed this year. He is 10. I volunteer at an orphanage where we are trying to build a preschool that the kids (many with physical as well as developmental challenges) can attend every day so they can develop social skills, fine motor, gross motor, etc, etc, etc. Anyway, your post makes me so thankful for the resources we have in our country. That a child with challenges gets all of those caring adults and professionals around the table advocating for him. Of course it says a lot about each individual at the table, but it also says a lot for our society and our nation – that we truly value each and every individual. Our system may be imperfect, but the intention behind it is that every life and every person has value. Everyone has something to contribute therefore we nurture and protect each and every one as best we can. Peace & love to you and your family!

  • 61.
    Dana said…

    Hi Ali,
    As an educator I’d like to thank you for the shout out you give to the team of professionals who care about your son. I know that the education system is not perfect, but there are many, many, many good things going on there that people often choose to overlook. There are also many good people doing good things for kids. I appreciate that you chose to shine a little light on it today.
    Dana

  • 62.
    Sharron said…

    Thank you for posting about this, Ali; it’s renewed my hope/commitment for me to gain more support etc for my son. As a single mother-of-3 (working f/t) support, empathy/sympathy, understanding, hope etc is often hard to come by! Thanks for helping me ‘keep on keeping on’ and being my son’s champion. X Sharron

  • 63.
    Christine said…

    As a teacher, thank you for appreciating. It means so much.

  • 64.
    hlphowell said…

    Ali, this post is so about your style. A story without photos with the perfect photo. A challenge you choose to look at with gratitude. A lesson on how to document the everyday when you aren’t even sure you want to document it. Finding a gem (“One of my favorite pieces of the assessment”) in an overwhelming report. And based on comments, it resonates with your readers. Well done!

  • 65.
    Jana said…

    Thank you for this post. It is always comforting and inspiring when the village works! Good job and good luck to Simon.

  • 66.
    Tracy said…

    As a mama I truly believe in the ‘it takes a village’ mentality. I have three children (13,11 & 7) and I see our roles as mothers and teachers and friends and neighbors to lift up all of our children and love them and support them on their journey. I often see many adults quick to judge these small people or make snarky comments about them and we really need to see the great potential that each one has…it’s our job to set them in a direction and support them on their way. And there are so many ‘ways’ to a happy, fulfilling life.

  • 67.
    Annette said…

    Thank you– I am a Speech Language Pathologist working in Illinois in a K-5 building. I know parents are appreciative for the work we (the team) do for / with their child, It feels good to see it in print. I agree that there is a lot that goes into our meetings and (more importantly) there is a lot that can come out of the meetings. I do what I do because I can/ do make a difference in my students’ lives — it is rewarding. Trust me, the team you work with is just as grateful for your family as you are of them.

  • 68.
    Lindsey said…

    As a teacher (or future teacher…I’m in grad school now), it warms my heart to know that when Simon is at school, he is surrounded by people who love him and are working hard to help him succeed.

  • 69.

    I so understand your feelings about the meeting. My son has autism and he is around the same age as Simon and I am always on pins and needles when those meetings are schedule. I have my tomorrow morning.

  • 70.
    Nancy G. said…

    What a wonderful posting. I work with deaf and hard of hearing children. I have sat at many IEP meetings. Sometimes I think what it would be like to be a parent at one of these meetings? There are many more “experts sitting at the table than family. We all have to share weaknesses and challenges the student faces or he/she would not be able to receive the services he/she requirea. As a teacher, I have a responsibility to look at the whole child and listen to the parents as this is their child, the people who know the child best. My friend is a parent of a child with special needs. From talking with her, I know that one thing a teacher says the wrong way will stay with that parent for years. We must choose our words carefully.

    It sounds as if you and the staff are working so well together. That is a blessing.

  • 71.
    Carrie said…

    At a time when so many public schools are being criticized for “failing” kids who are “Waiting on Superman” thank you for sharing your positive experience. – an educator

  • 72.
    Mel said…

    My two “boys” who are now 20 and 18 have autism. I have been to over a hundred different meetings for them over the years. I completely agree with you that there are so many wonderful people who work with kids like ours. Thank goodness for them! I have become friends with many of them. I always tell people the unknown blessing of autism that we get to meet these great people who we would not have otherwise met.

    I love your blog!

  • 73.
    Mary Rogers said…

    We spent most of yesterday in the ER with Madison dealing with some baclofen pump and digestive issues…and it was so nice to hear one of the RN’s outside M’s room “those parents are so awesome” – we don’t always feel that way but having a child with special needs you sometimes have to advocate extra hard, and it was nice to know it is appreciated. I wanted to say you and Chris are awesome too Ali!! and I am excited you have such a dedicated team working with you and Simon! yay!

  • 74.
    Karen M. said…

    I am the mother of one of those dedicated professionals that sit around tables like those and advocates for the student. She is a K-4 resource teacher and she is responsible for 39 students and their wellbeing. She writes their IEPs, she communicates with the parents, she makes sure their IEPs goals are being met. She works harder than anyone I know and loves each of her kids and is their biggest fan. She works with some wonderful parents like you and Chris, Ali and then tries to teach the parents that aren’t quite there yet how to be proactive but not adversarial. She has had about 17 meetings just like yours in the last two weeks – on top of her other duties,yet had a 6th grade non-sped teacher tell her last week that special education teachers weren’t real teachers, just babysitters! Yet she ended the day just like she started, bull of optimism and dedication. Between parents like you and teachers like her, I am convinced this is a pretty magical world! Thanks for sharing your stories, we are truly blessed.

  • 75.
    Karen M. said…

    sorry – FULL of optimism and dedication! :) Not bull!!!

  • 76.
    Jennifer Larson said…

    We just went through our son’s 3 year eval for autism. Not quite as hopeful as yours, since his behavior now qualifies him as EBD as well. Your post reminded me to focus on the positive, which we heard a lot of, and focus on how we can help him, which we can do. Thank you for the gift of your post.

  • 77.
    Amy said…

    Ali,

    Your post caused me to have flash-backs to my (now 20 year old) son’s IEP/Re-eval meetings! He also had several positive meeting full of caring, loving professionals; however, there were also some others which were far less professional, making those required meetings far more stressful and tear-filled, too. I am glad you just experienced a good one and pray you will have many more great ones!

    Thank you, Ali, for expressing how gleefully blessed a Mom feels when she gets to share her beautiful child with others who appreciate his fantastic uniqueness just as much as she does. Your expressions of gratitude to the great professionals in your son’s life are very important, since they are at school with him each and every day, at a time when you are (necessarily) absent from his world! Working together as a team, you can provide Simon with a strong foundation from which to build his future. With all of you working together, Simon will learn independence and how to advocate for what he needs, now and throughout his life.

    I have never posted a comment before online but felt that I needed to tell you that YOU were the most important person at that meeting. This is not simply because you are Simon’s Mom and love him unconditionally (which we know you do!) It is because you are his “Rock” and his legal advocate. You know ALL of his history and so much about his potential, too. After all, the only people who will be at ALL of those meetings (and countless others with doctors, specialists, etc.) throughout Simon’s entire youth are YOU (and possibly Simon’s Dad) and Simon. The continuity is essential to Simon’s progress. While gifted, caring teachers are also very necessary and genuinely deserve all of the appreciation and support you can muster, they haven’t been there for Simon like you have been, and they are not going to be there every step of the way for him into his future, no matter where he goes nor what he does, like you will be.

    Isn’t it a shame that all kids don’t get Individualized Education Plans (IEP’s) and re-eval meetings? My other two didn’t and I can only say that they had their own struggles which sometimes were not addressed as effectively nor as easily as they would have been if they, too, had an IEP.

    My children always attended and actively participated in these types of meetings, as well as their parent/teacher/STUDENT conferences. After all, just try putting yourself in your child’s shoes, how would YOU like to have all of the people who are so very important to your daily school life (your Mom, your teacher, your special ed teacher…) all meet to talk about YOU while YOU were not there? Can YOU imagine having YOUR employer meet with your parents or husband to do your annual job performance review, without YOU? If the child isn’t there, how much of the information is never communicated directly to him/her? At one of my son’s re-eval. meetings, my son refuted some of the observations reported by a school psychologist. Evidently, a clerical error caused some of the information on his report to not even be about him at all! And, my son was the one who noticed the error and questioned it! Yay for him!

    A message to give you hope…my son who was diagnosed with highly-functioning Asperger’s autism & ADD at age 7 is now 20 and living away from home as a sophomore in college, happily sharing a tiny room with an assigned (stranger, previously unknown to him) roommate! He is a double-major in an Honors Program earning a 4.0 GPA while also being actively involved in the university’s student government, working as a TA to a professor, and planning to attend law school! Watching him grow past his childhood challenges to succeed at such a high level has brought me pure pride and joy! I know there will come a day when you will heave a sigh of relief and joy at all the tribulations Simon has overcame along the way, too!

    Ali,don’t ever accept less than you know Simon is capable of achieving. Never accept that Simon’s potential is anything less than unlimited and never allow Simon to accept less, either. Simon’s hurdles are just set higher than a lot of other kids’ are, but that does NOT mean he isn’t fully capable of jumping over them.Although he has certain disabilities, his unique ABILITIES are even more important and too easily overlooked.

    Simon is very lucky to have YOU as his Rock and we are lucky to have you share your courage and devotion with us. Thanks!

  • 78.
    suvarna said…

    It is always so encouraging to hear about other people’s success in this area. We are also very lucky to have a group of skilled and caring professionals helping us and our son. They work so hard and really do care. They deserve our gratitude and support.

  • 79.
    Irene said…

    I have been in both the wonderful heart-warming meetings and the ones that make you feel like you are fighting for your child’s life. I have 2 with autism. What I have learned is that no matter how wondeful our team is and how trustworthy the people are we are the ones who are in it for the long run. We need toremind our professionals of this so they keep in mind we are the experts o. Our son. We truly appreciate our wonderful teachers, therapists, and administrators. But they are our support in the short term.

  • 80.

    I’m here reading this article and all the amazing comments because this post was listed on a blog meme “Pay It Forward” that takes place on my blog. God seems to make sure there are wonderful people in our lives, helping us through the ruff patches.

    God bless Simon and your entire family!

  • 81.
    Ruth said…

    Ali, it is so good to hear that others are blessed with a caring team of advocates who are the professionals and parents of kids who struggle with things that come naturally to others. I worry about many families who don’t call upon the professionals for help and experience this support that they and their child so desperately need. Hurray for all of you who are advocates and caretakers for these sweet, very real kids!

  • 82.
    anny said…

    just curious if you use the gluten, casein and soy free diet with him. if so, have you seen any changes? is he autistic or aspergers? struggling here to find some help for our child. he looks great and pretty typical from all my readings. you’re doing a great job helping him! thanks.

    • ….
      Ali said…

      Hi Anny – when Simon was first diagnosed at 3 we tried the diet with him. In his case we didn’t feel like it made a difference with his behavior(s). I think it’s worth a try as there are many families who have found that it changed things for them. Simon’s diagnosis is Autism Spectrum Disorder (aspergers is part of the spectrum but his diagnosis is not specifically aspergers).

  • 83.
    Cindy C said…

    As a mother of an autistic son I would add that sometimes our children teach us more about life and living than we can ever hope to teach them. May God bless you. The awesome team members we had the pleasure of working with over the years could be counted on one hand, but the impact our son brought to our small community was and is to this day, priceless.

  • 84.
    Wendy Perez said…

    Thank you Ali for sharing your story. I too have a son who falls on the Autism Spectrum Disorder and also find comfort and gratitude with the help of his teachers, counselors, and therapist when we meet to discuss Ryan’s progress and what we as a team can do to help him going forward. He is now starting high school and I can already sense a more mature young man then last year in middle school. I thank my son, Ryan for all of his hard work he has done in order to help get him where he is today.

  • 85.
    Karman said…

    Ali, thank you so much for sharing this story. Simon sounds very similar to my boy Quincy but he doesn’t fall on the Spectrum but he’s very close. Just quirky in nature and has his own issues but we love him and love this journey and wouldn’t trade any of it for the world.

  • 86.
    Emily H said…

    Hi ALi,
    It’s so nice to hear such kinds words from a parent perspective regarding your eligibility experience. I’m a 3rd year school psychologist in training in Virginia, and sometimes my job is very very hard; parents and the school disagree, kids don’t make as much progress as we hope, we deliver news that someone may not want to hear. I am so happy to hear that your experience in SpEd has been a positive one–often times we only hear when people are upset! I’m sure Simon is an amazing, talented, and incredible little boy and he is lucky to have such an amazing and talented momma :)

  • 87.
    Lisa Nash said…

    As someone who has followed you throughout the years, first in CK Magazine–then through your amazing books–and now through your blog; I have seen what an involved Mom in Simon’s Autism. You gave Autism a better meaning for me. You helped shed light on how diet can deeply effect the lives of people with Autism. All this to say, I feel like I almost “know” Simon through your beautiful writings. So, I rejoice with you over such a wonderful report. He seems like such a neat kid!!!!

  • 88.
    Queen Mary said…

    You are really blessed to have such a fine group.

  • 89.
    Valerie said…

    I KNEW there was another “connection” to you other than scrapbooking… I logged on tonight to watch the video for the 31 Days class I signed up for but instead found the segment about your son and your latest school meeting. Wow… our lives are very parallel in that regard. My daughter has Aspbergers (and my twin sons have ADHD). And just like you said, I am always amazed at all those people putting their hearts into my child. And I also relate to how wonderful these special kids are with their “handicaps”. Anyway, wonderful post, and I’m going to watch my video now; I’m really looking forward to starting my ’31 Days” project!

    • ….
      Ali said…

      Thanks Valerie and welcome to class!

  • 90.
    ann said…

    MOnths later..but…I didn’t know Ali, your son had Aspergers/autism…I am (now) a single mom. It’s wonderful to have a good support system. I read a few people going through similar things and my two cents having been through the iep and school stuff… I also had great teachers,etc but in the end I pulled him out of public school. IN NO WAY am I saying public school is bad. My point is only to trust your gut. There are times change is necessary and it doesn’t always follow everyone’s advice. I have in currently in a 100 student (k-8) private Christian school and it it so perfect for his needs. Not everyday is perfect but there is a deeper love. Focus is often less cookie cutter than public school because of the small size. My family, teachers, therapist all had concerns but I prayed and trusted that God would lead me to the right place and he is faithful.

  • 91.
    Claire said…

    I began following you because of the One Word, and the scrapbooking. But your link Autism caught my eye because I am a school psychologist. I appreciated seeing the other side and reminding me that what I do truly can make a difference in people’s lives. Thanks for that!

  • 92.
    Sue said…

    ALI!
    Thank you for expressing your gratitude for those around the table!I have been in sped for 18 years and the love and joy we feel with the growth of the children sometimes gets lost within all the details. I am a teaching assistant and we are not allowed to go to the CSE meetings in our school district. Please know that we are always “rooting” for the children to be the best they can be!

    So happy to hear of Simon’s successes…I have followed you and your blog for years!!!

  • 93.
    Cindy said…

    Ali,
    I understand your fears and your triumphs regarding your son. My Son has ADHD (on the Spectrum) and Auditory Processing Disorder. I made sure he received all the testing and services he needed in high school.
    Guess what? He’s in college now. Yes, it’s still a struggle for him, if you compare it to you or I. We are seeing alot of personal growth. My Son is determined to get his 4 year degree. Sure, he still has challenges in his life. My Husband and I support and teach whenever possible.
    Years from now, you will look back and smile. Your Son will have completed school and you will have survived it!

  • 94.
    Sue Mann said…

    1st time to read your blog.. and there were tears… You are so lucky to have loving children and they are so blessed to have you!

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