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

  • 1.
    Delia said…

    Go Simon. So fabulous to see others relect back the beautiful boy we all see shine though on your mum’s blog. Like all of Ali’s readers I wish you the happiest and most fulfilling of lives.

  • 2.

    This is deeply personal, thank you for sharing Ali. You and Chris are great parents. Blessings to you from Africa

  • 3.
    Amy Albert said…

    Thank you for sharing. I have a 4 1/2 year old daughter with down syndrome and although we are only in preschool I felt the same way you were talking about at Maggie’s last IEP…when you looked around the table you were thankful for those people sitting there. Since her birth Maggie has had an amazing “team”. From her pediatrician to her cardiologist to her case manager, ENT, PT and especially her preschool teachers. Maggie has come such a long ways in such a short time, I feel so lucky each day to be her mom. Maggie has opened my eyes to so many things and wonderful people. Just last night I sat around a table and started planning for this years Buddy Walk (in Sept.) with a bunch of other parents. Being in Maine we are a smaller group, but we hae great plans and I love helping with this event! We even have decided to try hosting a scrapbooking crop fundraiser event! (I am so excited for this). Having a child with Special needs is a gift. Maggie has taught me to slow down a little and enjoy things more. It amazes me that many of her “firsts” were even more exciting than I could have imagined. She gives a new definition to perfect! You and your husband seem like wonderful parents and I am sure that Simon is THANKFUL for you both. I am thankful for you being “real” and sharing….sometimes its not always easy.

    • ….
      Bonnie said…

      Hi Amy! I live in Maine, too. I’m interested in learning more about your scrapbooking crop fundraiser event.

  • 4.
    dawn said…

    This is wonderful Ali, so happy Simon has a great support group and surrounded by people who love him and help him. Way to go Simon!!

  • 5.
    michelle ward said…

    ali – great post. i never leave those kind of meetings without welling up with tears, feeling the same gratitude you articulated, as well as a full heart, believing it is such a privilege to be a parent to my sam. focusing on strengths – the most important perspective. yay!

  • 6.
    Sarah said…

    That DOES sound like a lovely sit-down with all of Simon’s support staff/advocates. The “he enjoys talking about family trips and his sister” REALLY MADE ME SMILE; that’s precious!

    I knew Simon had been diagnosed with Autism, but now I wonder if his case has been specifically labeled Asperger. I had never heard of that before until I had started watching the show PARENTHOOD (on NBC). I think that (on this show) they do an incredible job showcasing some of the struggles that ALL parents/families face, in general, but it has been insightful to see inside of a home/life that deals with Asperger’s as well.

  • 7.
    Kim said…

    As an early childhood special educator, thank you for your gratitude. I’ve been that person sitting there presenting the results, and yes, I do have my own life, but darn if I don’t love that student at that moment just as much as I do my own children. For the time students are in my class, they are mine. Thank you for realizing that. Best of luck to you and Simon as he grows.

    • ….
      Jen said…

      As a speech-language pathologist, I echo this sentiment and thank you for this beautiful post.

    • ….
      sarah r. said…

      and as a school psychologist, i echo these two!

    • ….
      Julie L. said…

      As a teacher I had the same thought too!

    • ….
      Kim Miller said…

      I echo the above sentiments….as a school occupational therapist, it is nice to read of your gratitude. Thank you for sharing.

    • ….
      Dona said…

      As a teacher I also echo Kim.

  • 8.
    Lindsay said…

    As a former special educator and now a parent myself, it is so nice to hear a parent be thankful and appreciative of the work that educators do and to recognize how much they care.
    Your son is very lucky to have such involved parents and teachers! :-)

  • 9.
    Paula said…

    Oh Ali, this really struck a cord in my heart. My daughter has a learning disability and an IEP as well. After years of fighting for her in private schools, being ‘dismissed’ from two of them because they just didn’t have the resources to help her, I was brought to tears at our first IEP meetings. I could not believe how a group of teachers and administrators could be so interested in helping my daughter succeed. Until that point, it felt like everyone was against us. I still get choked up and wonder if they truly understand how thankful I am for all they do…

  • 10.

    My eyes are full of tears. I’ve also encountered those kind souls and know how relieving it can be. Thank you for this heartfelt post of gratitude.
    My Blog

  • 11.
    Lisa W. said…

    Dear Ali,

    What a breath of fresh air…loving Simon. I have a dear friend with a son that is now 20 yrs old with autism. Her life is VERY challenging, we worry about her all the time. But mostly I am so very happy to hear your thoughts on “all those around the table and how lucky I am.” I work at a school, see allot of this type of thing, and so many parents critisize the teachers, specialists, knowing that they have the childs best interest at heart. It is so heartwarming that you feel that way and obviously you have a great “team” helping Simon. Such a wonderful story to hear. And I love that kiddo of yours…I know I know we don’t really know him. But you feel like you do, and see him in action with his kindness and things he loves (legos) through your blog. I truly enjoy! Thanks you so much for sharing, and how lucky that little boy and girl is to have such wonderful parents.

  • 12.
    Ellen McKinley said…

    For those whose children struggle with autism and Asperger’s syndrome: understand that in many districts, the 2-hour, caring meetings Ali describes are NOT the norm. As a parent, you need to be a strong advocate for your child and insist that the school take enough time, ensure the proper support staff, not just the teacher and special education teacher, attend the meetings, and do your homework! As a former special educator, I have had to battle to get these things on behalf of the students I serve, and without the support and insistence of parents who are familiar with what the school is legally responsible for, it does not always happen. Be that active parent!

    • ….
      Ali said…

      Thanks for your comments Ellen. This was the first time we had a 2-hour meeting – most of our IEP sessions have been much shorter. It was that long because it was a combined 3-year eval + IEP.

      And you are right, every parent (whether they are parents of special needs kids or not) needs to be an ACTIVE advocate for their kids. For parents of kids with special needs that especially includes knowing the laws.

    • ….
      Barbara Parnell said…

      Very true….I too have a son with autism,and while I do believe there are a few people on his staff that truly want to help,that is not the case for all.It is very difficult for some teachers and staff to fully grasp the entire situation,if they are not living it themselves.My least favorite line ever fed to me at one of these meetings,while they were trying to persuade me to go to a new school that I did not believe was right for my son & our family was”you know,if you do this,you may learn something.”To which I quickly replied” you know,my son has taught me more in the last 12 years than any book about autism could ever teach you…thank you very much.”Unfortunately,sometimes it all comes down to budgets & numbers with the schools,depending upon your district.ALways be your child’s best advocate,special needs or not!For Ali to say that she was happy & received the attention they deserved,is a breath of fresh air!Yeah for Simon!

  • 13.
    Katie said…

    As a special education teacher, this post just made me strive to make sure I make the families feel this way every time I interact with them. Always so insightful to remember the situation from all sides, and refreshing to have that moment where you rededicate yourself to what you do. Thank you for that moment today, and thank you for sharing, Ali!

  • 14.
    Terri said…

    I am honored by your post today. From a very grateful teacher, thank you, Ali. We often wonder if parents know just how much we love their children. We do.

  • 15.
    elise said…

    great post. GO simon & GO good teachers.

  • 16.
    Tina Lee said…

    ” he is kind-hearted”…that is what I want said of my boys! And should be top priority for all of us. Thanks for sharing your beautiful family with us.

  • 17.
    Megan Beverly said…

    Simply awesome. We have our re-eval tomorrow. As difficult as they are, I never dread them, we have such an amazing team. Cheers to our cool kids!

  • 18.
    Deb Pereira said…

    Ali, I am currently reading a wonderful book on autisim by Eileen Garvin who is the sister of an autistic girl. I think you would really enjoy it. The title is How to Be a Sister: A Love Story with a Twist of Autism. If you haven’t already read it check it out. Thanks for sharing your story with us.

  • 19.
    Veronica said…

    You are so lucky to have a team working for Simon….in our school district where cuts have limited Autistic services and where my son had to fend for himself at school and receive all the support at home with his parents…you are blessed.

  • 20.
    Karen said…

    As a parent of a kidlet living with autism, I can very much appreciate how good it feels (and how productive it is) when you are working with a ‘team’. I’ve experienced the opposite, as well as the ‘team’ working together to help our kidlet achieve his goals and thrive. And I much prefer the latter! (I think everyone at the table does.) So glad that Simon’s three year went well and that you are working with such great people! :>

    • ….
      Ali said…

      We saw some of the opposite early on after Simon was first diagnosed and it definitely spurred us to action in terms of finding the right fit for him.

  • 21.
    Angie Hall said…

    Ali, this too touched me. My 8-year old does not have autism, but we suspect he has executive functioning disorder… what his sister calls the absent minded professor issue. Nonetheless, when I dropped him off at carpool this morning, the woman who ushered him out of my minivan asked, “Is this your boy? He is just the sweetest thing. (Insert southern drawl here.)I’m his art teacher.” I beamed…don’t you love it when other people love your child with their whole hearts? Not because of what we have done, but because of who they (our other mothers, teachers, and friends) and our children are.

    • ….
      Ali said…

      That is exactly it Angie. Exactly :) .

    • ….
      Liz Ness said…

      LOVE this (and that photograph is awesome btw… =) ). This story (and Angie’s take) resonates for me, too, and it reminds me of how much others love our children and that we’re not alone as parents advocating for a solid ground and a path to the future; that our children have loads of help on their journey.

      This fills my heart with gratitude and love in return.

    • ….
      Veronica said…

      So true….As a teacher of your little ones….it is amazing how they worm their way into my heart so quickly and become a part of my family to the point that at the end of the year….tears are shed by me…. I truely miss them all summer long

      However, to be honest….I may not like them all the time…but I love them…and they are completely different things.

  • 22.
    Ellie A. said…

    Another misty eyed mama. This is a wonderful post. For us we are so very thankful for the attention that is given to my boys I love the communication that is given by each of my by the teachers. My youngest son receives speech therapy and I have seen how he has grown and flourished and I could not be more thankful for all that is done and the love that is given. I am forever thankful & will never be able to thank each of them enough.

  • 23.
    tara pollard pakosta said…

    he sounds like such a great kid!
    how nice to have someone else recognize those things in him!
    way to go mom, you are raising a great boy~!
    tara

  • 24.
    katie t said…

    Thank you so, so , much for this post. I love your writing and your story telling abilities. May I ask, how did you learn to write so well? Are you a natural born writer or did you learn from reading a book or class? Thank you again, for your post.

  • 25.
    Rebekah said…

    Thanks for sharing your journey with us Ali. I don’t comment much, but I read every post and am often inspired by your seemingly quiet and calm approach to life.

  • 26.
    Diane said…

    Ali thank you for sharing this with us. I am a grandmother of a 4 year old darling little girl named Keirstynne who was diagnosed at birth with Cerebral Palsy and some brain injuries,seizure disorders as well. She is beautiful, willing to learn and we delight in each and every progression in her life.

    We too are very appreciative of the entire group that sits around our IEP meeting table. How focused they are on Keirstynne and her progress and anything they can do to improve the quality of her life in regards to learning.
    I live in the state of Florida.
    I am so happy to see that it extends from the west coast to the east coast.
    Many blessings to you and your family.

    Thank You for sharing your personal story!

  • 27.
    marisa said…

    It’s nice to know we are all on the same page at those meetings. It took awhile and an advocate for our family to get there but I never gave up and now we all want the same thing for our son and the stories we share about him are awesome. We all learn something new about him :)

    I used to get intimidated at all the tests, the numbers, the goals, the “norm” but after researching and becoming very knowledgeable for the last 9 years has helped us. We now can go in and offer our own goals and accommodations and it helps the school to see how involved we are too.

    I love reading about your journey.

  • 28.
    Sue said…

    I am a volunteer child advocate at my state legislature for education issues and sometimes it’s very difficult to remind legislators that there are caring teachers out there who deserve thanks for all they do. (I’m sure Chris isn’t like that-wink) I was touched by your story and tweeted the link so people can remember how loving most teachers really are. Thanks for sharing.

  • 29.
    Cary said…

    Ali,
    Your post made me cry happy tears. My son Charlie age 5 has autism. He also has a wonderful team supporting him at school. That wasn’t always the case, so we moved him to another district and another program. The people who work with him now have restored my faith in humanity. Every single day we feel so blessed that he has all of these amazing advocates in his life. It has made a huge difference.
    Reading about Simon’s journey (and your journey too) has been one of the most healing things for my heart after Charlie was diagnosed. The way you approach it all was a calming force for me and I have always wanted to tell you how much I have appreciated that. So thank you. Thank you so much. I will always cheer Simon on.

  • 30.
    Alicia said…

    So great to hear! Before I stayed home with my kids, I tuaght 2nd and 4th grades. I’ve sat in on many of these and many IEPs as well. It’s always a pleasure to work with parents like you, who face the issue, evaluate, set your own goals for him, and use the support system to move on and help your child. Simon is lucky to have them and YOU!

  • 31.
    Sarah S. said…

    Ali-
    I encourage you to print off your post and mail it to each one of those in your meeting. I am sure it would make their day, not enough people stop and sincerely say “Thank You.” Keep up the great work!

  • 32.
    dnobles said…

    As one of those people who sit around the table with parents, thank you. It is absolutely a team effort and your words are much appreciated.

  • 33.
    Spedusue said…

    Thanks Ali as a Special Educator it is very humbling to receive such kind words. I have be part of these team meeting for many, many years and I am always in awe of what special strength my students demonstrate everyday as most of them come willingly to a setting that often is very challenging to them. They are my heros! Nothing, I mean nothing, can give such great joy as to see a child finally learn something that has been such a challenge. I can’t tell you how my heart almost burst each time they read a new word, complete a math problems, solve a social problem or write a sentence. These are truly priceless moments. Also I am also so amazed by what lengths families go through to support their child. Also I do appreciate your recognition. As special educators we are usually the student strongest advocate but are often the “forgotten” teacher and it is nice to hear that what we do does not go unnoticed

  • 34.
    Susanne said…

    Thanks for sharing this personal story.

  • 35.
    Deb J said…

    God is so good to put caring people in our lives and in the lives of our children.

  • 36.
    terri said…

    So wonderful! I remember that same feeling after meeting with my son’s “team”. Truly is such a blessing to have such wonderful people in place.

  • 37.
    Clynn said…

    my J. had his 3 year update last year @ his iep. (he will be 10 tomorrow) it is alot of testing and stress not only on my guy but on mom & dad too. but how wonderful to see the changes and strengths in the results and to see the areas therapists & school team can work on. Way to go Simon!

  • 38.
    madeline St onge said…

    Go Simon. Ali be proud of him, he is doing good. And YAY! for all the teachers that helping out.

  • 39.
    Maureen said…

    This was very moving Ali, and took me back to a time when I wasn’t sure if I had the energy to fight for my own adolescent daughter’s needs. Fortunately, I was already working in government and knew how to ask questions and push, push. It’s so great that you all had the kind of session you just had. It’s one of those rewards for working with the system when it’s good and fighting it when it doesn’t fit. “Kind hearted” – what parent wouldn’t love to hear that!

  • 40.
    Erin said…

    I really like this post. It’s great that there a so many people who take their jobs seriously and want to help each and every child reach their fullest potential!

  • 41.
    Teri said…

    Isn’t it wonderful to have that many people invested and caring about 1 person?

    If every child had such a devoted team of people, imagine how the world would be!

    Thanks for sharing. Go, go Simon!

  • 42.
    Deiga said…

    Thanks for your honesty in sharing about Simon (and all of your family). My grandson (who lives in Portland) has Aspergers too. I’m thankful my son and daughter-in-law are such great parents to him and his three brothers. It’s not easy.

  • 43.
    Paula G said…

    I am holding back the tears. So happy for Simon’s progress and praying that his challenges are no match for what a wonderful kid he is. Praying the same for my daughter. I too am thankful for the teachers and help we’ve had, and wishing we had the resources in our small town that we could have a psychologist/neurologist/psychologist/pediatric team vs piecing it all together. Praying every day.

  • 44.
    stacey said…

    I adored this post, Ali, thanks so much for sharing! Our oldest son had a stroke in utero and has an IEP through our school district (he’s in Pre-K now and sees an SLP, OT and classroom integration specialist). I have friends who have commented, “Oh, aren’t those long meetings such a hassle?” and NO! They are not. They are wonderful, and such a blessing… to be able to gather around and share sweet stories of my son, and high five his accomplishments… it is so heartwarming. We are truly blessed for the wonderful teachers and therapists that are a part of his life!

  • 45.
    Megan said…

    Thank you for sharing. As a teacher, these are difficult times in education. We face so many challenges and uncertainties with budget cuts and jobs. I think my greatest gift to the students I teach is to be fully present and I appreciate that you recognize the team supporting Simon. Celebrate that fabulous anecdotal comment and all the people that know him so well.

  • 46.
    Karen said…

    We just recently had my son’s annual IEP and it was over 2 hours long as well with 10 people representing various areas from the schools. He is going to middle school next year and it’s going to mean many changes for my guy. It’s going to be a mix of many emotions for us. I’m choosing to be positive about it all and think of all the new possibilities available for him. I just wanted to say I was surprised by the number of people who commented that had children in their lives that had special needs (both families and teachers and others). Wow, it’s nice to not be in the minority for a change! It always seems like I’m the only parent with a special needs child wherever I am.

  • 47.
    Candy said…

    If everyone in education did their jobs… all kids would have this support. Unfortunately, many educators do not bring their “A” game to school everyday. Parents, if you want the best for your child, you have to go to school too. That is the only way to show you care. Unless you volunteer, visit, question, and participate… you’ll get exactly what you put in to it, nothing. One last thought that could really change your relationship with your child… go through their backpack every night and find all the papers and announcements they didn’t remember to give you. It shows how involved you are with school. If I ruled the world I would make it mandatory for every parent to have to spend the day at school for each grade level they enter. Gone are the days when you asked them how school was today and they said “fine”.

    • ….
      Sue said…

      Candy, I am so sorry that you apparently have had some struggles with your school system. I don’t know that across the board if you aren’t at school, no one cares. I hope I represent many other SP Ed teachers that try to “fight” for their students. I work in a socially and financially challenged area where many parents aren’t available and myself along with my fellow teachers put our heart and soul into our students. I hope that there will be a change for you so you feel that your child will get the best support available in your district

  • 48.
    Paige said…

    As a third grade teacher, I applaud you for being so involved and “present” in Simon’s education. It will serve everyone at that table well!

  • 49.
    Carol said…

    Ali, I so appreciate you sharing your stories of Simon on your blog. I have read your blog and CK columns for years now and have especially enjoyed them because I have a 3rd grade boy on the autism spectrum as well. (We also have a black lab mix, Lego obsession, love of Star Wars, etc, so sometimes I see photos of your home with many of the same things surrounding you as surround me much of the time!) It is always helpful to learn from how other parents handle their journeys. I often hear from parents who feel they are more at battle with the school system than part of a team, so your post is encouraging on that front as well. I sometimes question whether I am asking for “enough” because we have such non-confrontational IEP meetings! Thanks for sharing your story. I look forward to see how Simon continues to grow and thrive!

    • ….
      Ali said…

      I feel that way too sometimes Carol – especially when you read stories from others about battles. And then I look at what he needs and what he’s receiving and it all seems to be in line with one another. I also think it might have to do with expectations…

    • ….
      s. said…

      I think for some students that have more challenges and needs it can really be a battle – especially in these financially strapped times when there is no public funds available (for one-on-one time or even two-on-on or three-on-one…or programs that are disappearing altogether).

      i have sat in some IEPs – Re-Evals that are VERY stressful because what one side wants/needs the other side acknowledges but simply cannot provide… it can feel like a no-win situation :(

    • ….
      sheila said…

      Carol, your wondering about if you’re asking for enough really resonated with me. I’m actually reading Ali’s blog as a break from preparing for our IEP meeting tomorrow morning. I stepped away from the process because I was having conflicting thoughts. We too have been blessed with an incredible team after experiencing an okay but less than ideal preschool situation. I think there was still a part of me that feels I need to be extra vigilant to make sure “everything” is in writing. When really, it’s probably okay to relax into trusting the authentic collaboration that’s genuinely there. Whether it’s in writing or not. Of course that doesn’t mean I’m going to be less active. I’m just going to say goodbye to some residual anxiety about the process after reading your comment. Thank you Carol!

  • 50.
    Amanda said…

    I let out such a hopeful sigh as you closed this post. What a testament to everyone’s dedication!

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