Cycles of Grief and Parenting a Child With Special Needs

Jennifer Minnelli, M.S., CCC-SLP  www.autismsphere.com The grief process, for a parent coming to terms with having a child with special needs, differs from the grief process that one might undergo with the death of a close family member. At a certain point, with a death, there is the finality of the headstone, and the cold absence of that dearly beloved person. However, with a child with special needs, parents and siblings can cycle through the different parts of the loss, depending on what is going on developmentally with the child, and what is going on within the family or the community. Here are some examples of the Stages of Grief (Kübler-Ross) married with my own personal self-talk: Denial: “This is not my child. She can do what you’re asking, under the right conditions. No way is my child in the same developmental category as that. I completely disagree with the…

The “R” Word Revisited

Brian R. King, LCSW spectrummentor.com Recent headlines about the epidemic of bullying, unfortunately, point to school systems overall that appear either indifferent to bullying, referring to it in some cases as “a right of passage that children must endure as a means of building character” (one school administrator actually said this in an IEP meeting I attended), or they minimize it as a misunderstanding. Others exercise willful ignorance under the guise that “We didn’t see it”– as though the bully is supposed to say, “Teacher, looky here! I’m going to treat Johnny like crap now.” Give me a break! If a child bullies another student out of the view of a teacher, it’s still bullying and not an opportunity to evade responsibility because the bully is savvy enough to know when you aren’t looking. Let me be clear, bullying is not a simple problem of the playground tough guy establishing…

Don’t Yell. Embrace Your “Inner Bitch” Instead.

Elise, A.K.A. aspergers2mom asd2mom.blogspot.com   We have all heard the stories. That mother who just won’t listen when administrators talk about her child, the parent they delegitimize because she got frustrated and yelled at them, the one who thinks she knows her child best. So what do you do if you are faced with a problematic situation? How do you channel your frustrations to get your child the services they need? It wasn’t until I was in my forties that I learned that you need to do what you need to do for your kids — who cares what others think? This is what I call “embracing your inner bitch.” Now, embracing your inner bitch is a good thing. You use your frustration and your anger to motivate you, but you do so in a way that is calm, intelligent, and very thought-out. You leave the yelling and the kvetching…

Why Every Decision I Make Matters

Lisa Brandolo Johnson www.grembe.com I recently read about researchers who suspect that children with autism have a different chemical fingerprint in their urine than neurotypical children. While the researchers’ claims are questionable, a urine test for autism would save me so much emotional anguish. It isn’t that I really think my son was misdiagnosed and that he is on the spectrum — but it would just be a final answer. A yes or no test would be objective, it would remove the human element of error. It would be concrete. I am a parent of a child who, according to the Autism Diagnosis Observation Scale (ADOS), is classified as non-PDD.  This is good news, right?  This means all of his delays can go away, right? His clinical diagnoses of developmental delays, behavioral disturbance, and anxiety related to sensory issues? Without a test for autism, I am left wondering what it means for my…

All You Need to Know

Jess at Diary of a Mom adiaryofamom.wordpress.com I wonder ~ Do you know that I sneak into your room to watch you sleep, secretly hoping that you might wake up, even for a second? When you do wake up and I’m not here, do you wonder where I am? Do you understand why Mama has to go to work, baby? Do you know that it kills me to leave? Do you know that my heart breaks every single time I get into the car and drive away? Do you know that I think of you every moment of every day? Do you know how desperately I want to restructure your world — to make it less hostile, less foreign? Do you know how hard I try to make things easier for you? Do you know that I would give my right arm to take away your fears? Do you know…

TPGA Status Report: 10/19/10

When Liz, Jen, Emily & I conjured up The Thinking Person’s Guide to Autism in June 2010, I thought it would be a straightforward project like The Can I Sit With You? project that Jen & I have been running since 2007, in which we put out a call for submissions with a deadline for inclusion in the book, we publish the essays online, we compile them into a manuscript, commission a cover from wonderful book designer Amy Freels, and send it all to the printers. Then we have ourselves a really useful book within two, possibly three months. All I can say is, TPGA is a different project entirely, compared to CISWY. It’s certainly a bigger project. We are overcome by and so grateful for the incredible response to this project, and the volume of excellent submissions — which have never stopped coming, not for a moment — thank…

Sensory Seekers and Sensory Avoiders

Hartley Steiner www.hartleysboys.com For the purpose of this post, I am going to list sensory seeking and sensory avoidant behaviors, to paint a more accurate picture of what sensory-based behaviors look like. You can consider these ‘symptoms’ or a ‘checklist’ but my real goal in posting them is to help parents and caregivers recognize the sensory challenges in the children in their life.  In addition, I hope to paint a more specific picture of the kinds of behaviors Sensory Seekers exhibit. Sensory Seekers I completely ignored the first person who suggested Gabriel had Sensory Processing Disorder (SPD). Technically, I even made fun of her. How stupid was she to suggest my son had sensory issues? My kid wasn’t one of those who covered his ears at every little noise, nope, not my kid. My kid was fine with loud noises, loved water, mud, hot salsa and was not afraid of…

Buying Hope

Jennifer Byde Myers www.jennyalice.com Lotions, potions. A special chair for eating, a special chair for learning at home. Shoe inserts, leg braces, seat cushions with no grip, a lot of grip, seat cushions with little bumps, seat cushions with little bumps and gel inside, and a backrest. Fancy forks with bendable handles, child-sized forks, spoons with holes in the bowl, bowls with grips on the bottom, bowls with the side cut out, and special chopsticks, and sippy cup after sippy cup with any number of parts and combinations to mess up. Small piano keyboards, and larger piano keyboards, and a keyboard you can walk on, just like in the movie Big. A touch screen monitor, an adapted computer, an adapted tricycle, an expensive German tricycle. Jackets that zip with a nice big tab, pants with an elastic waist that are easy to take off, overalls which are difficult to take…

My Child and Me – Keeping Everyone Honest (Or, the Therapists We’ve Fired)

Jennifer Minnelli, M.S., CCC-SLP www.autismsphere.com When your child first gets diagnosed with a developmental disorder, you, as a parent, are in a very vulnerable place. Regardless of your area of professional expertise, it’s almost as if you start over again, as a beginner. A beginner to parenting, and a beginner to this new world of diagnoses, specialists, medications, teacher opinions, and therapists. When we started down the road of diagnosis for my quirky oldest child, I was reluctant. It was hard for me to submit to other peoples’ opinions, when I felt I knew exactly what was going on with her and how it should be treated. Also, I felt, I knew the dark under-belly of the world of allied health professions. Several years out in my career, I had already worked in a variety of settings, from public school to inpatient hospital, and everything in between. I had worked…

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How to Help Your Autistic Kids Have the Best Halloween Ever

Shannon Des Roches Rosa www.ThinkingAutismGuide.com When it comes to Halloween and autistic kids, parents need to be clear-headed, creative, and flexible, and prioritize our kids’ needs and stamina. So, if you’re in the market for Halloweening advice, let me dump some on your head, courtesy of personal experience, friends’ adventures, the Internet, and the Twitterverse. Does your child find the entire concept of Halloween overwhelmingly frightening? Then sit down with your child and read as many books about Halloween as you can, talk about what kinds of activities may be available, agree ahead of time which activities your child will participate in and to what degree, and reassure them that they can opt out of anything, any time (and then weave behind-the-scenes spells to ensure that your promise holds). Does your child need encouragement to try new or different things? Trick-or-treating may be just the ticket, given the treats they’ll…