Imagine

colorful_imagine-1952Imagine your child not wanting to be held as a baby, talking then not talking and losing speech. Walking but never experiencing crawling. Not getting a single night’s sleep in the crib you and your husband spent so much time picking out and preparing the room the special room.  Projectile vomiting almost everything you fed to him.  The medical problems such as epilepsy, pneumonia, croup, RSV, bronchitis, ear infections, OT, SP, PT, Factor V, Asthma, Vision & Dental problems, concussions and more.

Imagine going from always being SpongeBob for 4 Halloween’s straight to never wanting to participate in Halloween again.  Not being able to go to the park for a fun day until the there is a bee seen and all hell breaks loose.  Not having the right food, or no food, after school and your dash suddenly becomes the a kickball. 

Imagine having to sit in your child’s room night after night after night at bedtime until he finally falls asleep not risking one step towards the door in fear to wake him.  

Imagine your child not being able to communicate or articulate the way other kids do. Not being able to say “Happy Birthday”, “Happy Anniversary”, and “Happy New Year”. “Happy Valentine’s Day”, “Happy Mother’s Day” or “Happy Father’s Day”? without continuous prompting. Not saying please and thank you without feeling uncomfortable or completely under breath.  The preparation for every single outing, school day, family function or even just a car ride.

Imagine having a child who doesn’t like any sports when both parents played just about every sport that was available to them in school.  Not getting an “I LOVE YOU MOM” first. A Hug after 4 years old, or any affection at all unless you count grabbing your child’s hand to save him from getting hit by a car when crossing the street.

Imagine every conversation with your child being harder than the one before trying to constantly keep in the fore-front of your mind while repeating, almost chanting to yourself, ‘he doesn’t mean that the way that sounded’, ‘he really does love me’, ‘I’m just his person’. 

Imagine having to explain this and SO much more to friends, family and others who don’t understand.

Imagine having a child you love so much your heart breaks every single time you think what this world would be like for him when you are not here. This is the life of a family with autism.

 

 

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Truth Be Told – Shamefully

If you are a parent you probably know parenting is hard.  There is no manual, no buzzer to tell you when you right or wrong for the decisions you make.  Its saying silent prayers that when your child becomes an adult he/she is a healthy, happy, loving individual.

But what if this little bundle you gave birth to receives a  diagnosis along the way, such as; autism, anxiety, OCD, a brain injury, epilepsy, cerebral palsy, or maybe not physical, maybe its emotional or neurological.  Some of which are invisible to the world.

This puts your whole world as you know it into a tailspin.  You know something isn’t right with your child, but you don’t want to acknowledge it.  You know once you do, it means you have to accept it and deal with it.   When the acknowledgment happens then life will change as we know it.  You begin to grieve for the child you gave birth to before you can accept the ‘new’ one.  Once this happens you want to talk about it.  You need to learn, to gain insight, knowledge as to how, why and what to do next.  You seek friends to understand what you are feeling and going through.

You look to your family, your spouse, your siblings, friends, anyone and everyone who will listen to you.  This doesn’t work so well because it seems no one is listening, conversation is awkward and hard.  There’s no longer anything in common, they can’t relate and don’t understand.  Then comes the judgment.

You try your coworkers, you try happy hour with friends, but none of that works.  All of this makes you feel worse, shameful.  Like somehow all this is your fault.  So you stop talking, you withdrawal, you don’t work.  All of this leads to more judgment.  You start doubting everything you feel, think, do and say as if you aren’t meant to be a parent at all.   You feel all alone and that is where you and your special needs child become inseparable and you both become each others ‘person’.  

When the time does present itself to say anything at all it seems you always have to justify that ‘but I love him so much’, or the other person feels that they need to make you feel better by saying ‘oh well he seems and looks perfectly normal’.  Whatever that means right!

Raising a child with special needs is something only other parents with special needs children will get.  And even then, each and every child with special needs is completely different, even with the same diagnosis.  We tell ourselves that people have it so much worse, stop feeling like this.  We tell ourselves that it could be worse.  We tell ourselves to stop complaining and just be glad you have a child and he/she is alive.  I am here to say this is wrong.  I am always about love, peace, and happiness.  I am always about being kind to one another and the saying “don’t judge another until you walk in their shoes”.   I also say, everything you feel is relevant to your situation.  No one can undermine your feelings.  I sincerely believe that.  Special needs parents feel things I am sure would make typical parents so uncomfortable.

I have heard special needs parents say things like, they feel like they may not love their special needs child enough because of the diagnosis and the difficult days have beat her down.  I have heard that autism is a curse to her son, its not a blessing.  Another mom said she hasn’t been sleeping and wants to take sleeping pills and never wake up.  There have been talk about Mom’s wishing their special needs child would pass before they do because the thought of the child living on without their ‘person’ (MOM) is heart wrenching.

There is therapy after therapy, PT, OT, Speech, and sometimes Vision therapy, Brain therapy.  There’s wrap around, floor-time, ABA, Cognitive behavioral and/or Psychological counseling.  Most of these therapies are outside of the home and some are people in and out of your home.  Its hard listening to other parents of typical children brag about their child, how they go to birthday parties, how they scored three touchdowns in the Friday night game, and how they went to prom and had a great time.  Even with siblings, its one of the most difficult things to hear even though you are incredible happy for the other child and parents, there will always be that part of you that wishes just for that moment what it feel like if that were you and your child.

Its punishment to see your child fight through each day.  To watch them be vulnerable and plagued with their diagnosis.  To know that they are not getting better but instead are getting depressed and angry at themselves for being the way they are.  We have to see our children targeted via internet, school bullies, neighborhood bullies, and so on.  We are on constant monitoring and it most likely will not stop until we are no longer alive.   Its a difficult time for parents when they don’t know how to plan for their future.  How to plan their Last Will and Testament, or if their child will go college.  There is a different way of doing all of the above when there is a special needs child involved.

What I have learned is that we should never question our love for our children,  as I will never question mine.  I will move mountains for my child – I feel like I already have.  I go from devastation to elation then heartbreak to joyfulness all in a instant.  All we can do is keep loving and remember to take care of ourselves so that we can continue to be strong and advocate for our children.  But my true question is, how can we advocate for something we hate? Its a silent struggle.   

I personally, wouldn’t change it…..today.

 

 

 

Expectations of our Teachers

So we want our teachers to be good role models. We want our role models to be leaders, to stand up for, what they believe in, to be independent thinkers. Do we know our child’s teachers political, moral and ethical beliefs?

How can we judge a teacher (or anyone else) for doing exactly what we want our children to learn or become just because we don’t agree with that persons beliefs or stance on a certain subject?

I mean I understand not wanting your child’s teacher to drink and drive or be a child molester or pedophile, but is it right or even realistic to expect a teacher to have beliefs like us in every area? To not have a life outside of the school life? To not have their own identity (that isn’t illegal or harming others) once they close ‘shop’. For instance that Springford teacher that is a wrestler outside of teaching. Why is it our concern even IF he was doing the nazi wave? Does he influence our children this way? Does he teacher that Hitler is good to our children? If not, then what he does in the ring, which most wrestlers are just play acting, then is it really our right to judge?

I am very grateful for the teachers and that most of them dedicate much of their time to our children. I realize sometime my child’s teacher does or can ‘rubs’ off on them as I am sure an intuitive child can get to know a teachers personality and character quickly, but again, isn’t diversity and the ability to know and communicate with different people part of school and socialization and what we want our children to be able to learn? Sure, there are times I have had to talk with my child because of something a teacher said that ‘stuck’ and over shadowed our belief, and we weren’t thrilled! But it’s part of life. Our children will learn, hear and believe, yes, believe, things from co-workers, schoolmates, other children, other adults, even siblings at times that we wish they wouldn’t, but eventually we as parents need to trust what we have placed under our children as their platform to build on is strong enough for them to fall on and remember their roots.

Life is hard enough, I know for me, I will embrace my children’s teachers any way I can. And what they do away from my child is their business, as long as I am not reading their names in the paper in police briefs or they aren’t teaching that bigotry is great or satin is who we pray to, to my child I think I am ok.

So thank you to all the upstanding Teachers!