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My Autistic Angel: One Year Later

My Autistic Angel: One Year Later

Every parent of an autistic child remembers the day they got their child’s autism diagnosis. When we received this news, I felt like I was crossing the threshold from a life with a path we thought we could map out to a life that is even more unpredictable.

Today marks the one-year anniversary of the day we got Angel’s diagnosis and the tears still catch me off guard. They could come when someone glares at us while Angel is having a meltdown or experiencing sensory overload. They could come when I go to an IEP meeting and read Angel’s present-level of functioning in black and white.

They could come when I end up getting him the Pre-K Math workbook because even though he is in Kindergarten the K workbook seems too advanced. They could come when we encounter another child Angel’s age or younger with more advanced communication skills. They could come because another parent empathizes with me and I think someone finally gets it.

Fears come and go. We still do not have a special-needs trust or will set up. I am scared of dying. Having an autistic child makes me fear death more than I ever have. I ask myself the question most if not all parents in my shoes ask, “What will happen to our child when we are gone?”

When someone tells me that Angel does not look like he has autism, I cringe. What is autism suppose to look like? When someone does not understand my decisions or judges me for making them, I get defensive. It is my right to do so.

On most days, I put the emotional side of autism into a little compartment in my mind. I tend to focus on homework, school meetings, evaluations, doctor appointments, and the most basic question of what to make for dinner. I focus on writing for this Web site and utilizing my support system. These are the things that get me through.

It is not always easy and I experienced this when we took Angel to the Bronx Zoo this past Sunday for their Boo at the Zoo event. While we were waiting in the line to go to the Habitat (haunted) Mansion, Angel went to sit under a nearby tree with a book we got from one of their Treat Stations.

A few seconds later, another boy around Angel’s age sat next to him with his book. Next, the boy looked at Angel and asked him something. Angel did not respond. Actually, he could not respond. I think the boy was asking him something about the books they were both holding. The boy repeated his question and Angel replied, “Eeeeeeeeeeeeee!”

I got nervous. I did not say anything or draw attention to it. I did not want the boy to get upset with Angel because he was not answering him or responding appropriately. Thankfully the boy did not persist. I sighed with relief.

There are times when people ask Angel a question and he looks at them smiling. I find myself having to step in to prompt him to answer or answer for him. All in an effort to avoid that look they sometimes give. You know the one when they wonder why he isn’t responding or can’t respond. I know I will not always be there to answer for Angel or protect him from the outside world but as long as I am alive, I will try.

I admit that I get defensive and angry when people make ignorant comments because they do not understand. I do not always have the emotional strength to make every moment a teaching moment. I can’t control how people act but I can control how I react toward them. So when polarizing public figures like Ann Coulter use the derogatory r-word to make her point, I say a prayer for my child and all the children like him who have to grow up in a society where ignorance, bigotry, and intolerance rule the day.

I know we have many challenges ahead but with every challenge Angel has made great strides in his development. He is saying more words. He can say please and thank you- IN CONTEXT.

Imagine my delight when he comes to me in the kitchen and says “I want juice, please.” To some this may not seem like a big deal but this is a child who communicated by using mostly single words or pointing to make requests.

These are the little things that give me hope. I have faith that with every milestone Angel will grow up to be the extraordinary young man that he was meant to be.  Autism be damned!

Thank you for walking with us on our journey. Please share your thoughts. I look forward to hearing from you.

Sincerely,

Miz Kp

Miz Kp
Written by Miz Kp

19 Comment responses

  1. Avatar
    October 23, 2012

    The tears can still catch me off guard some days too Miz but trust me they get fewer and farther between. You are doing a great job!!

    Reply

  2. Avatar
    October 23, 2012

    I love you dearly Kp!
    You are truly a Mother-Angel!
    Your love and light will always surround Angel as it does everyone you touch!
    Thank you for being so brave and sharing.
    Autism be damned!!
    You are changing hearts and minds and teaching others the power of love!
    You truly are an inspiration!!!
    Remember Aunti-Angel will always be there to love and support both you and Angel.

    Reply

    • Avatar
      October 23, 2012

      Love you, too B!!! Your support always has and always will mean a lot to me and my family.

      Reply

  3. Avatar
    October 23, 2012

    Congratulations on your hard work and ability to focus and put Angel first even as you navigate autistic seas. Just keep on playing the deck of cards you and Angel’s Dad have been dealt as best as you can
    as you help Angel develop his fullest potentials.

    Reply

    • Avatar
      October 23, 2012

      Thank you, Musubah. We will continue to do our best for Angel.

      Reply

  4. Avatar
    October 23, 2012

    This is beautiful Kp. So huge he told you he wants juice – there will be many more incredible moments to come that most people take for granted but you will appreciate completely and cherish forever. You are an amazing mom and Angel is indeed extraordinary. xo

    Reply

    • Avatar
      October 24, 2012

      Thanks so much Kristin.

      Reply

  5. Avatar
    October 23, 2012

    Beautiful! You’re an inspiration. Miz KP.

    Reply

  6. Avatar
    October 23, 2012

    Your words are beautiful, I can’t help but feel the tears welling up, you have said so much of what is floating around in my head before I finally fall asleep at night. thank you.
    I can truly relate on a lot of levels. We have a letter that is in a sense a “will” that our families know about with our wishes if we die, its in a drawer in my kitchen, for some reason my son has felt the need to open it every time he walks by it, and just to glimpse at that yellow paper reminds me how things have changed so much in just a year from when we wrote it.
    I recently had an issue with a neighbor and having to defend his needs against her incredibly ridiculous ranting was my first true test of “momma bear instinct” since we got his diagnosis. I truly thought my blood was boiling and it took over an hour for my nerves to calm enough for me to stop shaking. But honestly I’m happy its over, I was afraid to offend friends when they made ignorant mistakes like “he doesn’t look autistic,” or “don’t worry he looks totally normal” but now I feel like the first confrontation is over and I can manage it as any mother would from this day on.
    I really don’t know why I rambled all that off to you, but I guess the gist is I appreciate being about to relate. Thank you.

    Reply

    • Avatar
      October 24, 2012

      You are welcome, D. Alls. Thanks for sharing your story. I appreciate that you can relate. These are not easy thoughts that we have as parents but they are real and all we can do is our best and hope our children are okay in the end.

      Reply

  7. Avatar
    October 26, 2012

    I was broken when I got the diagnosis, but I learned to deal with it and work around Angel’s strengths. And boy does have many! He is a superstar…

    Reply

  8. Avatar
    October 31, 2012

    Miz Kp and Dad of Angel,

    You are both heroes and so is Angel. He really has made great progress and with parents like you the sky is the limit.

    Peace and Blessings.

    Reply

    • Avatar
      November 02, 2012

      Thanks so much. We appreciate your words of encouragement.

      Reply

  9. Avatar
    November 03, 2012

    Hopping over from “love that Max” link up to say Hi! ((hugs)) The first years are difficult but over time it smoothes out. Ten years later I don’t remember the “day” she was officially diagnosed but I remember throwing up on the side of the road. It truely is a sucker punch. It sounds like you guys are heading in the right direction for your little guy. He can thrive and you can thrive as a family — it just takes time and hard work. Keep going! Keep going! ~ Jamie

    Reply

  10. Avatar
    November 04, 2012

    We are several years into our diagnosis and it is still so hard. Although I have learned to live with our daily realities, sometimes something so simple catches me off guard. It is a tough road we travel and I share your fears about what will happen to Moe when I’m gone. But we move forward, delight in the accomplishments when we can, and share the tears with others who get it when we need to.

    Reply

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