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.
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.
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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!
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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.
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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.
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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!
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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!
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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.
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).
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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.
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[...] read this awesome post by Ali Edwards about her experience at a school conference for her autistic son. She looked around the table at [...]
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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.
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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.
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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 :)
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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!!!!
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You are really blessed to have such a fine group.
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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!
Thanks Valerie and welcome to class!
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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.
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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!
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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!!!
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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!
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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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[…] I’ve written about these meetings before, most specifically a post titled Looking Around The Table. […]
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