“First do no harm!”


I have thoughts on my mind tonight that I’d rather not have! When you read where one caregiver is taking out their own frustrations onto the child to which has a disability it becomes amazing clear that the caregiver needs to take a step back and reanalyze their thoughts on their child! Yes, I know our roles as special needs parents can be cumbersome, I’ve been on the journey for 10 years now myself and life-altering it has been! However, as a special needs parent I can also say that to ‘grow in your knowledge’ as a parent/caregiver and learn the true depth of your child’s disability and what his/her needs are, should really become an overall “tone” that you carry.

My frustration starts from the moment it is clear that this caregiver throws their child’s “bad day/weekend” into a category of “not going to let him get away with it” type behavior! As if to make a point of saying that they believe the child is in total control of his/her actions! I will stop here and say on a side note that: having a disability can sometimes give a person the wrong idea, especially a young child, that they can get away many of life’s daily irritations JUST because they have a disability ….and their momma’s said so! Ha! I know all too well that mentality ….and I work feverishly to ensure that my little Hero does not try to play the disability card. I can think back to a recent time where my little angel was getting out of the car and bumped his foot and proclaimed “I need a wheelchair, I cannot walk!” Needless to say, we had a long talk about what it means when one “needs” a wheelchair.

Another thought on this topic is that when a child with a developmental disorder that’s characterized by impaired social interaction, verbal and non verbal communication and restricted and repetitive behaviors, is having a ‘bad day’ it is wise to seek out the “whys” and “what may be causing this behavior” questions rather than simply writing it off to bad behavior.Question things like: What changed today that made it hard for him/her? To assume that the child can control it and was just attempting to make the caregivers day difficult proves to be bigger ‘trouble a brewing’ down the road.

By far my biggest hurdle in accepting this person’s out of place comments is that it was done so ‘tongue and cheek’ as to amuse their audience. I totally understand the need to unwind after a difficult day of parenting but at the expense of your disabled child is not acceptable! Yes, I make reference to hardships and sometimes the oddities that come with raising a non typical child, but mostly to show the world around us that though our life is different, it is okay.

I remember the early days of not knowing our Hero’s needs. It had a lot to do with me just wanting things to get easier, I wanted my life to roll on by like everyone else’s around me! That made me mad quite frankly and I wanted a normal life, plain and simple. It was easy to get upset at the very situation that my son could not help. I had my share of those days, wanting “change” …..truth is, it was not him that needed it, it was me!

I always like that phrase “The most import days of your life are :the day you were born, and the day you find out why!” ~ Mark Twain. To me, the day I truly started to enjoy myself as a parent was not so much the day he was born, however, it was the day I quit trying to change him so much and I started to accept him instead. That was my “why” in life, it all started to make sense!

lastly, I don’t write about this frustration I saw from this fellow parent because I want to belittle them, instead I’d like to educate them as to how they are in this for the marathon, not the sprint! It takes time to raise a special needs child, you will learn this ….pace yourself. In the meantime, enjoy the ride and advocate for him ~ then you will know your “why!” I HOPE you find it for the both of you!


“Different, Not Less!” The disadvantages of an invisible disability!


So when looking into the eyes of my son who will turn 10 years old this fall most people at first glance would not give a second thought to him having a disability. He is able to walk on his own, he can see, (even though he has a dx of Ocular Motor Dysfunction ), and does not need a device to get from place to place! I am thankful of this indeed, however, at times having an invisible disability can be hard for others to process just why he can be so “different, yet not less!” as Temple Grandin once said about the Autism community.  It is human nature to have the attitude of “what can he/she do for me?” All too often these attitudes come very early in life although most parents never want to admit that their children have inherited this family trait and will quickly try to “right” a situation when little Johnny or Sally shows disrespect at the public playground! The question we really should all ask ourselves is how do we perceive ourselves to our children in everyday life that tells them how we truly value others …..both different and alike!

The first few years of our superhero’s life were all about uncovering why he had behaviors that often forced us to leave public places to calm him, if not avoid them all altogether! His poor vision, social skills, lack of communication and often complete anger and confusion eventually lead us to a proper diagnosis and thankfully, by 3 years old, there was a name for all of his puzzling ways: Autism! I actually felt relief and so did my husband when we heard those words from the team that reported the diagnosis! It was then that we could start towards a beneficial road to getting Connor the much needed help and therapy that was out there and available!

By summer time after the winter diagnosis of Connor’s autism,  I had already quit my career and left it in the dust! My mission was set and I had no plans to look back ……and to be perfectly honest, our first encounter with our son’s school system was that there was much to be changed on how and what type of services were provided! It was clear that we would need to supplement a majority of the therapy he needed privately or fight the school right out of the gate on our first year with him as a preschooler? We instead hired an advocate whom already knew Connor and could speak openly at his IEP about his needs, (and she did just that!) The school met us half way, we were happy and we supplemented the rest privately both during the school year and in the summer months too!

Our routine has not changed much over the past 7 years except to say that Connor is pretty conditioned to being almost a year around student! He does get breaks during the summer but for every “Off” day he has a “school” day! The effort he has put into it has brought him light years from where he began …..at 4 years old he could not speak intelligible words! Now, he can speak with most skilled listeners understanding him about 80% of the time! Adults usually understand him more easily that his peers ….but it really ALL depends on IF the child wants to stop what they are doing long enough to TRY and understand what Connor is conveying to them!

Yes, it is true my child looks exactly like your child from head to toe but if I could just take you aside for a minute, you that mom or dad and say this: I need YOU to know these things that you and your child cannot see when looking at my child:

PDD-NOS (pervasive developmental disorder-not otherwise specified.) ~ Autism.

Ocular Motor Dysfunction ~ the absence or defect of controlled, voluntary, and purposeful eye movement. People with this condition have difficulty moving their eyes horizontally and moving them quickly.

Dyspraxia ~ A disorder that can affect planning of movements and co-ordination as a result of brain messages not being accurately transmitted to the body.

Sensory Processing Disorder ~   A condition in which the brain has trouble receiving and responding to information that comes in through the senses.

Auditory Processing Disorder ~ A variety of disorders that affect the way the brain processes auditory information. Individuals with APD usually have normal structure and function of the outer, middle and inner ear (peripheral hearing). However, they cannot process the information they hear in the same way as others do, which leads to difficulties in recognizing and interpreting sounds, especially the sounds composing speech.


These things ….I know you cannot see them but they exist in our world! Our superhero battles them each and every day and I admit I sometimes forget all these terms and what they all mean because like ,YOU, I cannot see them either! But he battles through his day with all these things working against him and guess what? He STILL wants very much to befriend your child! How wonderful is that? He still puts a smile on his face and even with all these worries and struggles working against him…. he STILL bebop’s right down the street on his “off” days in the summer time looking for your child to play with because to him ….your kid’s the “best” and he just wants to be like him!

So PLEASE this is in no way a mom’s cry for pity, not even an ounce of it, it’s a cry for respect! My kid’s a Superhero, just like your Superhero!