Friday, October 14, 2011

Special Needs Spotlight: Beckett





I'm Ness, wife of J and together we're the parents of three beautiful boys -- Mack is 1, Bobo is 2, and Beckett is 3. We didn't start having kids until our mid-thirties and my husband and I knew we wanted at least three, so we had them close together. Beckett made it easy to feel ready for another baby -- he slept well and ate well. He laughed loud and often and smiled at the least provocation. People stopped me everywhere I went to comment on how happy Beckett was. He rarely cried -- even when I left him with a sitter. He went to bed with little or no fuss and required little attention. He was fat and happy and content. So content that I was able to take him to work with me starting when he was only 7 months old. Beckett and I traveled from Brooklyn to my office in Manhattan in the morning, his smile and laughter brightening even the gloomiest of subway cars. At work he sat on the floor by my desk and quietly played with toys, he napped in his stroller in an empty office, and during lunch we hung out at the fountain at the Museum of Modern Art.

I recognized very early on that Beckett's behavior was exceptional. But J and I, and everyone who met Beckett for that matter, thought it was exceptional in a good way, not at all reason for concern. At 33 months Beckett was diagnosed with autism, and I now can see the early signs of autism in those behaviors. It was quite a shift for us mentally to go from thinking our child was advanced to learning that he is actually autistic. We're still wrapping our heads around it. 
(Of course, we still think he's perfect!)

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Miggy:  Your son has Autism, one of the most common conditions affecting children and families today--can you describe some of the first signs you saw that led you to think your son might be autistic?  What should other parents be looking for if they suspect their child has autism? 

Ness:  Beckett had a speech delay, and I wasn't overly concerned. But during my pregnancy with Mack I thought his birth would be easier for Beckett if he had some language skills. So I talked to our pediatrician about having him evaluated so he could get speech therapy. That's how we got the evaluation process under way. Only after Beckett was diagnosed did I see the significance of the following, some of which he exhibited as an infant:

toe walking
hand flapping (we called it excited hands before we were aware)
no waving
no pointing
no mimicking sounds, gestures, or words
he rarely, if ever, cried for his mommy
fiercely independent (he was so very content to play alone)
didn't play with toys appropriately (eg, he would line up his trucks and cars and get eye-level with the wheels and fixate on them as he pushed the vehicles back and forth)
poor eye contact (he had eye contact as an infant and I didn't notice it slipping as he grew)
and, of course, speech delay

Based on what I've learned so far, one of these signs alone doesn't signal autism. There are typical kids that toe walk. There are typical kids with speech delays. But a combination of behaviors could be reason for concern, as was the case with Beckett. Also, I had no idea the autistic spectrum was so wide. The only autistic kids I'd ever seen were quite severe, so I didn't think my son, whose outward appearance belied that anything was amiss, could be autistic.

Anyone can go online and find lists of autism symptoms, and if a parent is concerned I would do that and also talk to your pediatrician immediately (I wish I had talked to ours sooner.). But I think at the crux, at least in our situation, is communication. Beckett smiled and laughed, but made no effort to communicate any sort of wants or needs with words, sounds, gestures, or even crying. All babies, I believe, are not going to hit milestones at the same age. But looking back the milestones Beckett wasn't hitting were significant when grouped together. The independence was also a big indicator. A baby should not be content to be alone for long periods of time. They need to check in with someone; they should show some attachment for caregivers. Beckett didn't do this. And the fact that I took him to work and he didn't cry or whimper and make any loud sounds -- I think that was a big red flag. There's absolutely no way I could have done that with my other two boys.

Speaking of which, I watch Bobo and Mack like a hawk, making sure they are looking at me, expressing wants and needs, checking in every so often, showing some affection and attachment, and playing with toys appropriately. So far, so good.


*photograph by Justin Hackworth


Miggy:  Can you take me back to the day when your son was positively diagnosed with autism?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Ness:  I was fully prepared to hear that Beckett had some delays, but I was not prepared for autism. When we were told the diagnosis the weight of that word seemed to stop time for a moment. I was sitting there in this meeting nursing Mack, who was only six weeks old at the time, and just started to cry.
I can't accurately describe the overwhelm I felt in those initial moments. I didn't know I had a child with special needs when I decided to go ahead with pregnancies 2 and 3. Now I had a newborn, a 15-month-old, and a 33-month-old who, intellectually, was functioning on a 9-month-old level.
I still feel very much overwhelmed today as I did in the beginning. But I'm also more fearful than I was initially. I know more about autism than I did a year ago. In my mind, delays can be overcome. But autism is a different beast altogether with lots of questions and very few answers.

Miggy:  Explain how your sons special need affects your day to day life?  
Let me preface this by saying that there are families with special needs kids whose situations are much more complicated and demanding than ours. Even families with autistic kids that are more severe than Beckett. Our situation is rendered more demanding, I think, because we have so many small children and until a short while ago, lived in a city where normal day-to-day activities are difficult to accomplish even with typical kids.

That said, we try to create as many teaching moments as possible throughout the day. Encouraging Beckett to use words instead of crying, working on eye contact, redirecting him when he engages in self-stimulatory behaviors (ie stimming) such as hand flapping and toe walking.

In many respects dealing with Beckett day to day is like dealing with an oversized and extremely frustrated 18-month-old. He can't communicate very well, he's not good with transitions, he can't dress himself, and he is not potty-trained. When planning activities or outings, I try to allow time for his tantrums, unwillingness to get dressed, and the slow pace at which he walks and descends the stairs. I pack a diaper bag not unlike what one would pack for a smaller child, filled with plenty of snacks, toys, and books so that I have options should he get triggered. And there are some activities we simply can't do. Firework displays come to mind.


Miggy:  What are the biggest worries you face for your child?
   
I want Beckett to progress and someday be able to mainstream and attend a regular school and complete regular classes and go to college. I want him to have relationships. I want him to have the fullest life possible. My biggest worry is that these things won't happen for him. My second biggest worry is that it will be my fault because I didn't try that one treatment or give him that one supplement or research that other therapeutic approach. There are a lot of resources out there for autism, and I'm grateful for that. But at times it is difficult to navigate those waters and figure out which treatments are worth pursuing.

First day of autistic preschool
Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your sons autism?
It's funny to see Bobo, who wants to do whatever Beckett is doing, try and mimic his autistic behaviors (behaviors we try to redirect). Recently he tried to toe walk and couldn't do it. Also, Beckett uses echolalia (repetitive speech or parroting) and it's always fun to hear what random phrases he repeats verbatim. He's full of surprises.


Miggy:  How can people best approach or respond to your child? Is there something you wish other people knew so as to avoid awkward or hurtful situations? 

We're lucky. People respond well to Beckett and say hello to him and really try to engage him. And he still gives out those million-dollar smiles he did when he was a baby. I've had a few moms stare in public when he's acting out. I ignore that or in some cases engage in a dialogue about his condition. But everyone always responds warmly when I bring it up. I find it frustrating, however, when I say that he's autistic and the response I get is "Oh, cool. He's a genius." That's not the case. I'm not hanging out at home with a highly verbal child who spends his time solving advanced mathematical equations and composing sonatas on the piano. What I deal with everyday is physically and emotionally taxing, it's stressful and it's wrenching as a mother -- my heart breaks for him over and over and over. I feel like Beckett's struggle is negated with those comments. He's 3. He should be running around outside playing without a care in the world. Instead he's in school full-time and in therapy after school. He's a hardworking little boy.


Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?
Children are a miracle. Every word they learn, every skill they master, every hug they give -- it's all miraculous to me. I look around at all children now, special needs or not, and am simply amazed at what they can do, how much they learn in such a short amount of time, and how much effort actually goes into mastering something as simple as jumping. If I can lock eyes with Beckett for even a second, I'm bouncing off the walls because I'm so proud of him for doing something that is so difficult and uncomfortable for him. The other thing I've learned is that ultimately we, as parents, are not in control. We do our jobs as best we can and try not to the let the mommy guilt get us down, but there are some things we simply cannot dictate or demand regarding our children, special needs or not.


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I want to thank Ness for sharing her beautiful Beckett with us today.  One of the main motivations for Ness to participate in our spotlight was so she could share her insights on autism and help other families who might suspect--or who don't know to suspect--that their child has autism.  I think her insight was invaluable and I thank her for participating.  And thank you to everyone out there for reading--it's been a great experience for me as I hope it's been for you.  As always if you have any comments or questions or know any families who I can spotlight please leave a comment or email me at thislittlemiggy at gmail dot com.  

11 comments:

  1. thank you so much for this. i may print this out and use it for a reference in the future. she says so eloquently what i have been feeling and thinking but unable to adequately express while experiencing my own son's autism adventure.
    i really appreciate her use of the word typical. what a wonderful contrast to saying "normal". no one is normal, typical is just right.

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  2. Thank you for this wonderful post.

    Each of these spotlights have touched me. Everyone is special and a child of God.

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  3. What a wonderful insight. I don't know what is harder: looking different so people expect less out of you or looking "normal" and not having people understand that there are difference. Regardless, with love and the grace of God we mothers march on. Thank you for sharing your story.

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  4. I have good friends whose eldest son is also autistic (and we're going to his 9th--NINTH!!--bday party today). Their early story was so much like Ness' it's eerie. They always felt so lucky, lucky that their baby/toddler slept so well, would sit through a full length movie, ride in a plane, all with perfect (and enviable to those of us who were sleep deprived and also socially deprived) behavior. Thank you for this spotlight on a more invisible special need.

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  5. Oh, and to Heidi, I agree with the word "Normal." It sounds so awful when you're saying someone else is not that. I finally hit upon 'ordinary,' since it doesn't detract from how our little autistic friend is by connotation. My kids are all typical, but not always so normal anyway, haha.

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  6. Thank you so much for sharing this!

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  7. I can tell you as a teacher, the autistic children are some of the most cherished in a school. Have no worries, the other children and the teachers will all love him. :)

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  8. I really loved this and needed to hear some of the things she said.

    That little Beckett is a delicious morsel of goodness.

    I think being a mother is THE craziest, hardest, wildest, most outrageous, courageous, insane, wonderful thing any mortal could ever undertake. Ever. The end. Period.

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  9. Linda P.7:32 AM

    Thank you so much, Ness, for sharing about your sweet Beckett. Thank you, Miggy, for having these special moms share their stories. Once again, as mom to a special needs young adult son, I get so much out of reading about others' journeys.

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  10. Ness- you're a wonderful writer. Thank you for sharing your story.
    my nephew J. is autistic (PDD) & my mom mostly takes care of him so I get to see him a lot. it's nice to see his progression- as slow as it may be or seem. he's a little 4 year old who struggles to talk but is a really good helper & is pretty cheery most of the time.

    do you do anything differently with his diet? J. is a terrible eater & my mom doesn't work to get him to eat better or take anything out of his diet that i've read that might work. any suggestions? i guess i could just call you... but your answer may help others as well

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  11. Ness here. Thank you all for your nice comments. This has been an adventure to say the least.

    Hello, Elsa Bags. We would like to amend B's diet, but as of yet haven't gone there. I know lots of moms have witnessed improvements in their child with a gluten-free/casein-free diet. B eats maybe 6 things -- they're all healthful, but definitely contain gluten and dairy. So changing his diet would be nothing short of a nightmare. We are testing to see if he's allergic to gluten or dairy. And if that's the case, we'll get to work on altering his diet sooner than later and see what happens.

    For now we are doing ABA therapy and slowing introducing various supplements into his diet that others have had success with. This stuff is hit or miss -- works with some kids, doesn't with others. So I'm taking it slowly and trying not to overwhelm his system.

    I'll e-mail you.

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