Acceptance. Love. Just Be.

I’ve been surfing out in the blogosphere, finding new corners not yet explored and curling up with others already well-known. What an amazing thing, this blogging community, with its ability to lift me at times when I’m feeling sad or just worn out. I especially appreciate Susan’s post because sometimes I don’t see the forest for the trees, you know? I’ve never been one to obsess on a cure, whatever that is, but I am awfully focused on getting the boys as much therapy and programs that I can. My sole purpose has been to help them be in our world as much as they’re able. I am reminded, though, that there is just so much to enjoy in the here and now.

Lately, and by that I mean ever since A.F. (after the fire), we have seen such extremes in John. He is communicating more and more with us and the chief word he has mastered is NO. He is very clear on what he wants these days.

1. DRAWING — Dragging out a Doodle board, he brings it over and says “PO!” which is his directive for us to draw pictures of his beloved red Teletubby. After we’ve rendered it to his satisfaction, he erases it fast, and says “ELMO!” If the person drawing is Autism Twins Dad, then they move swiftly through the entire Sesame Street cast and begin again. If it happens to be the more artistically challenged me, then John will study my version of Po with a sad look on his face and pronounce “Mouse.” One morning, he said “DRAW PO!” When I looked at him in shock he tried “I WANT PO!” (sadly, he immediately got my mouse, I wasn’t about to tarry)

2. SWIMMING — Pulling me to the bathroom where his still-wet bathing suit hangs, he motions for me to pick him up, yanks his suit off the hook, and says “SWIM.” That boys loves the water. I know this is not uncommon for kids with autism — he is transformed the minute his toe gets wet. Right now we have him in a life vest and he kicks merrily along, but I would love to find him lessons and a place where I can make swimming a year-round event. The things he’s said in the water — like “MORE!” after we’ve counted down together “THREE. TWO. ONE. BLAST OFF!” and I’ve thrown him in the air.

3. SINGING — This is the most popular DVD in the (so not) palatial inn. John surprised us tonight by singing along to this old fave. His pronunciation is not the clearest, but the melody was unmistakable.

Sing, sing a song
Sing out loud
Sing out strong
Sing of good things not bad
Sing of happy not sad.

Sing, sing a song
Make it simple to last
Your whole life long
Don’t worry that it’s not
Good enough for anyone
Else to hear
Just sing, sing a song.

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  • it never ceases to amaze me how much of our children we can find when we find what they love.

    my heart just soars when i see kendall come alive when she sings.

    enjoy them. enjoy even the time in the (so not) palatial inn. when i get overwhelmed i try to look at things through the lens of memory .. like twenty years hence when it’s a funny story that the twins ask to hear again and again while you laugh about moving from room to room because your little tiggers needed to bounce.

    in the mean time, you said it best. just be 😉

    all the best!

  • Great post, Kal.

    Tulipbaby LOVES that song. SB overheard me singing it to her earlier today and felt the need to tell me that Big Bird has a much nicer voice than me.

    And because he’s SB, he told me this no less than 5 times.

    Just in case I didn’t hear it the first 4 times 🙂

  • That’s no baby steps those are HUGE leaps. And yes you’re absolutely right, the blogosphere is such a hook for all of us trugging around, especially on a bad day, you know that there are loads of people experiencing just the same sort of things.
    Cheers

  • Dear Kal,

    First off, I am so happy for you that your family survived the fire. Second, you have my heartfelt sympathies for the disturbance in your family life–I’m moving from house A to house B, and even with a neurotypical, nearly adult kid, well..we’re stressed.

    Also please accept my apologies for hi jacking this post. I am trying to spread the word as far as possible about this request for information:

    Please publicize to autism parents: government agency seeking public input

    Please feel free to forward this to any person you think would be interested.

    More information at

    http://neurodiversity.com/weblog/article/171/

    ======
    On September 15, 2008, members of the Services Subcommittee will meet to review all public comments submitted to date, and will present these comments at the next meeting of the full Interagency Autism Coordinating Committee, which is scheduled for November 21, 2008. Members of the public are invited to participate in the September 15 Services Subcommittee meeting by conference call; for more information, please consult the public notice posted on the U.S. Government Printing Office website.

    =======

    Request for Information: Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders
    Notice Number: NOT-MH-08-016
    Key Dates:

    Release Date: August 11, 2008
    Response Date: September 19, 2008
    Issued by: National Institute of Mental Health (NIMH)
    Description

    The purpose of this Request for Information (RFI) is to seek input from Autism Spectrum Disorders (ASD) stakeholders including individuals with ASD and their families, autism advocates, State officials, scientists, health professionals, therapists, educators, and the public at large about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.
    Background

    The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and, among other duties, requires that the IACC develop a strategic plan for ASD research. The IACC includes both members who are active in the area of ASD research funding, services, or advocacy, including several members who have family members with ASD, and one member with ASD. In March of 2008 the IACC established the Services Subcommittee, to assess and improve services and supports for people with ASD and their families. A previous IACC developed an ASD Services Roadmap, which is available on the IACC Website above. This RFI is a next step to obtain updated information about present and future services and supports to individuals with ASD, and their families across the lifespan.
    Information Requested

    The IACC is interested in receiving your input and ideas about high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports. For example, information is sought in the following areas that impact services and supports across the lifespan: education services, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.
    Responses

    Please send responses to iaccservices@mail.nih.gov no later than September 19, 2008. Please limit your response to one page and mark with this RFI identifier, NOT-MH-08-016, in the subject line. The responses received through this RFI will be collated, summarized, and provided to the IACC Services Subcommittee and the public. Any proprietary information should be so marked. The collected information will be analyzed and may appear in reports. Although the IACC Services Subcommittee will try to protect against the release of identifying information there is no guarantee of confidentiality.

    A summary of the results obtained from the responses to this RFI will be available to the public on the IACC Website.
    Inquiries

    Inquiries regarding this notice may be directed to:

    Azik Schwechter, Ph.D.
    Office of Autism Research Coordination
    National Institute of Mental Health
    6001 Executive Boulevard, Room 8203, MSC 9669
    Bethesda, MD 20892-9669
    Telephone: (301) 443-7613
    FAX: (301) 480-4415
    Email: schwechtera@mailnih.gov

    ====

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