Posts Tagged ‘autism blog’
Understanding Self Injurious Behavior
To the autism families that are just learning about Self Injurious Behavior (SIB): I know you’re scared. I know you’re sad. I know you’re mad. I know you’re confused, so confused. Guess what, that’s ok and you’re not alone. We began our journey of SIB on August 14, 2016 my son was 4 years old. My son Deegan was diagnosed with Autism clinically (ADOS) at 22 months old, on September 18, 2013. We began to see “signs” when he was just 13 months old and he began early intervention, speech,…
Read MoreThe Woman who Understands my Son
I am so BEYOND thankful for SO many teachers and therapists for my 7 year old son Mason. It’s hard to choose just one to honor. My husband, Zach and I, have 2 sons with special needs. We love to swim, visit parks, and watch Mickey/PJ Masks. Mason is 7 with moderate autism and has low verbal abilities. Jonas is 3 1/2 with pervasive developmental delays and will be assessed for autism soon. While I think our boys are the sweetest, funniest boys ever, they have a lot of challenges…
Read MoreWhen My Life Was Flipped Upside Down by a Dual Diagnosis
The other day my life was flipped upside down. We were on our way home from the video EEG and the impact of a dual diagnosis struck me to my core. It was a Friday afternoon. Derek was driving. I was watching all the cars out the window. My mind was reviewing the information we had learned and coming up with a new list of to-do’s. When, suddenly, it dawned on me. This is our life. Appointments, tests, seizures, medical fears, disruptive behaviors, therapies, financial burdens, hospital stays, unrelenting exhaustion…
Read MoreThis Year I Wish…
To my son Prestley, In 2019 I would like… To feel less guilt I have an overwhelming sense of guilt. I feel guilty because Prestley doesn’t play – is he happy? Does he know how loved he is? I feel guilty about my other children. We don’t go out altogether, we don’t do many fun things – do they resent their brother? The guilt of medicating Prestley with melatonin – so he can sleep. So we can all sleep. So much guilt swarms my mind. Daily. To find others in…
Read MoreTo my Partner in Life
My name is Amber and I am hard of hearing and an autism mother. I want to thank my husband, the man who is always fighting for awareness of our autistic son. This is going on year 3 since I found out about the autism diagnosis of my son, Jason. I remember being in the room the diagnosis day and just was feeling all mixed emotions. I was speechless going through the whole evaluation with my son. I just wanted to go home and cuddle my son and be done…
Read MoreDear Friends and Family, It’s Been a While
Dear Friends & Family, A few months ago, I felt a small cyst in my right breast and still haven’t been able to see a doctor. This brought on a harsh reality for me as a mother of a child with special needs: I don’t have time to be sick, to go to my own appointments, or to die. I never thought about that until today. I don’t have time to get depressed or get my own therapy. I’m so busy holding it together for my daughter that it has…
Read MoreThey Say it Takes a Village
They say that it takes a village to raise a child. I have wondered where you get this village. When my son was first diagnosed with autism I did not want to tell anyone. I knew that he would beat the odds and recover from autism. Maybe it was ignorance, denial, or wishful thinking. I thought that if I worked with him hard enough, provided him enough ABA therapy, changed his diet, gave him supplements he would return to the little boy that he had been before his regression. But…
Read MoreA Normal Breath
I was finally sitting on the couch with a cup of tea when my oldest daughter came downstairs. “Um, Mom, I just walked in on Ellie in the bathroom and she was holding poop in her hand.” Shit. Literally. So this is it, this is going to be the “next thing”. Our new challenge. A new behavior. A new reason to hold my breath. It is the day after Christmas and I feel as though I haven’t exhaled in the last 72 hours. I thought I could finally breathe normally.…
Read MoreDid You Know?
Right now, someone is playing charades, A child, wide-eyed, his voice upward inflected, A voice, but not words, His every desire affected. Did you know every word, Out of every girl and boy, Is not a given, it’s a gift, It’s a little piece of joy? Have you heard the screams ringing in your ears? A longing, disguised in sound. The weight of his need to be known, Bringing his whole body to the ground. Have you felt your frustration tremor just under your love, And wondered when the ground…
Read MoreWhy did this happen to us?
My husband and I often ask ourselves, “Why did this happen to us?” Is there a lesson that the universe is trying to teach us by giving us two children on the autism spectrum? Tonight, I think I figured it out after I attended two holiday parties. At the first party, I finally got closure about losing a friend after she made explicit comments. She thinks my child doesn’t have autism because she is not intellectually delayed and makes eye contact. My child has behavior issues (not autism) and needs…
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