A Medical Professional Said WHAT?!! (#Autism)

Never ceases to amaze me what medical professionals will say about our kiddos and their abilities…

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Many Faces of #Autism – Episode 2: Vimi

Thank you so much to Vimi for sharing her story of her family, which includes herself, her husband, and three children. Her middle child (her son) has Autism.

Quick promo for Episode 2 (I love that her baby squealed during this promo!):

The interview:

Thank you Vimi and her family!

To Diagnose or Not, That is the Question (#SpecialNeeds)

 

With the return to school, our kids have started with new teachers and potentially new classmates, so it’s our time once again to help the new teachers and classmates understand our special children. This year, I’ve been hearing more parents talk about whether or not to tell the school, teachers and friends about their child’s diagnosis or special needs. Personally, my belief is to tell…tell everyone! The more people who know about your child’s needs, the better they can help support you and your child.

 

My son is “fortunate” to have just one diagnosis: Autism. Although Autism is trying and testing some days, it’s a very simple and relatively understood diagnosis, and one that has a lot of supports in place in the school system, and the medical community. Don’t get me wrong, I need to stay on top of everything to ensure he gets the support he needs to succeed in school, and later in life.

 

Friends of mine are constantly searching for a diagnosis for their child and they are frustrated. Every new specialist they see offers a new diagnosis, which negates the diagnosis they received from the previous one. As a result, they can’t get the appropriate external support for their child.

 

I’ve heard others recently whose children are at the age of starting school and they have an Autism or Aspergers diagnosis for their child, and are really wrestling with whether or not to tell the school and the new teacher of the diagnosis. When they ask me, I give them a very simple answer: TELL THEM!

 

Others wrestle with whether to tell their own family and friends, fearing those friends and family will treat them and/or their child differently. My harsh opinion is to cut those friends and family. Being a parent is stressful enough, let alone a parent to a child with special needs. Having friends around who aren’t willing to understand your child isn’t helpful to anyone involved.

My Guest Post – #Autism is Nothing to be Ashamed Of

(Guest post on SpecialNeeds.com

A few years ago when I was married, we invited a number of other families over for a “get to know you” type of BBQ as we all met at a 10-week course, in the beginning of our journey of learning about Autism.  As we went from family to family, one family surprised me. They had received diagnosis within the last 6 months, and they were still trying to figure out how to tell their immediate family members. These same family members even babysat occasionally so would have obviously been familiar that there were “issues” with this family’s two boys. 

Honestly, it took almost everything I had to remain composed during this discussion. The parents were highly educated, well respected, and employed in enviable jobs.  They had the ability to understand what Autism is, and how to access programs and services to support their sons’ Autism diagnosis.  Yet, they were worried about how their family would treat their kids, and especially how they would be “labeled” at school.

See the rest of my post here: http://www.specialneeds.com/children-and-parents/autism/autism-nothing-be-ashamed

 

Battle to #Autism Diagnosis – Post on SpecialNeeds.com

I am honoured to be posting on Special Needs.com. Such a wonderful online publication!  Here’s part of my post:

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Recently, within a few days, two of my friends confided in me that they are starting to think one of their kids (two different families) may be on the Autism Spectrum, and then they asked how I knew my son had Autism. I’ll admit that my ex-husband (we were married at the time) was the one who brought it to my attention when the kids were 18months old. I was surprised. At the time, I had recognized that our son seemed to catch whatever bug was going around and took longer to recover from a cold or the flu than his twin sister (not symptoms of Autism, for the record), but otherwise, I hadn’t noticed anything.  

The kids’ dad pointed out that our son:

  • Didn’t point using his index finger
  • Had stopped talking (he had started talking before our daughter, and then stopped)
  • Didn’t respond to his name
  • Didn’t make eye contact with anyone

Being a new mom of 1.5 year old twins and working full time where a 40-hour week was a “light week”, honestly, I hadn’t noticed any of these symptoms.  I didn’t have time to sleep/pee/eat, let along think?! I was also almost offended by him saying our son didn’t make eye contact. Our son made eye contact with me all the time! 

See the rest of the post here: http://www.specialneeds.com/children-and-parents/autism/battle-autism-diagnosis

Our Story – Parents Awaiting Friends Need Friends

Karen’s story is similar to many of our stories…just knowing *something* wasn’t “right”. Knowing we had to listen to our gut, even when others are trying to tear us down and make us believe we are crazy. Persistence is key when you are a parent of a child with special needs. Thanks for sharing your story Karen!

 

We have two children, our oldest Faith is 8, and we have been on a journey since Faith was born.  I guess I knew right away something was different but kept telling myself that everyone is different or it was a faze.  Somewhere in my heart, being a mother, I knew – something was just not right.

Subtle at first, it quickly changed into something else.  When she was two years old, Faith developed night terrors which we could not comfort.  When we mentioned it to our doctor he said she was speaking so it was probably nothing.  Some people around us started to judge us and her – bad parenting and call them temper tantrums. We tried everything to keep her happy and her eating habits became very picky.  Again, we thought it must just be a faze as the doctor says.  I decided to quit working and stay home hoping the one on one help and attention might be what she needed.

I have to admit I was scared for Faith starting school – I could see how she was not prepared for it but I was hoping she would prove that little voice inside of me wrong.  She started school and the night terrors started in waves again.  Potty training reverted backwards instead of forwards and there were many accidents – most of which in public causing more whispers and sometimes just rude comments from others.  I felt like I had failed as a mother – that I had done something wrong along the way. 

There were many meetings with the teachers, counselor and resource people at her school.  It took most of my time and found that it never really stopped after that – just some times of quiet but again they would always start again where we dealt with another “Faith Issue.”  I still wait by the phone and sometimes it feels never ending.

I explained to the doctor about her issues again and again, and would not give up, so he finally he decided to check if she had any developmental issues.  Her developmental assessment finally came back as, “Severe Mixed Receptive-Expressive Language Disability”.  This was explained as a problem with anything verbal, receiving it or giving it.  It was border line Autistic and this was not a full diagnosis though – it’s partial.  I couldn’t believe what I was hearing. 

I went into a brief state of shock while we were talking until I started to cry.  It wasn’t a normal cry however, it was a frustration and dread I had never felt before.  How could they be sitting here telling me that my baby, my Faith, wouldn’t have a full life?  Not a “normal” life anyway.  I proclaimed that, “My child will be the best she can be.  I don’t care if I have to sit every moment helping her get through life but I will not give up.  I vowed to do what I can to make it easier for her and no doctor would tell me my child would not be normal.”  There was no help for this really, no support – I knew in my heart there was more and that the fight was not over.

After fighting for many years, Faith has finally been diagnosed with “Higher Functioning Autism – with a Learning Disability in Math and Language”.  I cried when the psychologist finally said it – not out of shock – but because I have waited so long to finally have a name given to the “problem” that has plagued us for so long.  I could now finally get my daughter some help.  Years of waiting all boiled down to a one hour session. 

I know now I’m not crazy. I felt a sense of validation.  Someone heard me and my instincts were right.  They heard me and saw we needed help.  That’s a huge hurdle for us.  One hurdle out of many.  Sometimes I wonder if we are already too late but even after all of that I try to remember:  Today is always a brand new day, try to smile, keep breathing and people can only give me their observations – I am the one that can choose how to acknowledge those observations and give them meaning.  Love drives us and that will never stop!

Karen Sherman is the Administrator of Parents Awaiting Diagnosis Need Friends.  She can be contacted on Twitter @karen_sherman, or on Facebook.