Secrets of A Special Needs Parent

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Special needs parents are tired. Not tired, we are exhausted.  Think about this, if the special needs parents that are married are exhausted.  How do you think the single parents feel?  Isolated, lost, sad, helpless are just some of the daily emotions that we feel.   People tell me all the time that I look tired. Like the meme I read in the past.  I think that it just might be the new look on my face.

My focus is on autism but I am sure that parents of children with other disabilities can also relate.  Some days I just cry because I wish I had five minutes to go inside of Sydney’s brain to know what she is trying to tell me or what it wrong. I wish I knew when the seizures were coming so I could be there.  I wish I could ask her how in the hell she can function on only three hours of sleep. She has been known to stay awake all day and goes days without sleep.

The siblings of the special needs children are tired.  They are tired of sharing all of the attention, misses family functions, late night visits to the ER, and routine and picture schedules all over the house.  We just can’t find a babysitter.  We are blessed to have family help out.  We have to choose our outings strategically.  We can’t go to all social functions. We have to use our babysitter sparingly so that they are not burned out.  I need my friends to know that I appreciate the invites and I do my best to attend. Even if it is for thirty minutes.  Please don’t hate me if I have to cancel at the last-minute.  If only you would understand and take a walk in my shoes.

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We are exhausted from being on the phone all day with doctors, therapists, and insurance companies.  We are tired for advocating with the schools for programs and inclusion. You don’t know how much your text to say hello means to us. Or that five-minute conversation that we have together. That might be our only adult interaction for the day. We try to take time for ourselves, five minutes in the bathroom is like heaven.

The meltdowns are exhausting.  Your child can go from aggressive behavior to the biggest hug and I love you mommy all within five minutes.  We are exhausted from the sensory overload that takes over our child no matter how well prepared we are.  That’s when we feel like failures.  I felt that way when Sydney wouldn’t ride in the car.  We would have to pull over on the side of the road until it was safe enough to drive.

I hate the Smurfs! But you see the smurfs are her new obsession.  She googling blue body paint, she knows the smurf episodes and searches amazon for smurf everything. But as much as I hate those little blue people.  Talking with Sydney about the smurfs helps with her expressive language.  We will create stories or puppet shows with the smurfs.  We would not have been able to do this four years ago.

We only feel safe at autism friendly events.  Enough said.  When Sydney was younger it was fine to meet up with a group of people and Sydney would just blend in with the kids. Now that she is older I want her to have a friend.  Not a friend that wants to use her as a reference on her NHS application and never come around again. I am thankful that Sydney has a friend that loves her for who she is, even though they are getting older and are at different schools, she still wants to visit Sydney. That is the definition of a true friend.

We want to spread awareness and not feel trapped in our homes.  We want you to smile at us instead of rolling your eyes.  Please don’t tell me you get it because your sister’s husband’s friend’s son has autism too.  It doesn’t work that way.

Special needs parents are human and fragile at times and fierce like lions at other times. We want the best for our children.  We don’t want pity. We just want a friend.  Special needs parents do more in one hour than some parents do in eight. We pick our battles not because we are raising bratty kids, trust me.

Special needs parents are not quitters. We don’t give up.  Through prayer and support we find a way.  I would love to have a support group but I am too exhausted and when would I possibly have it.  Maybe 2 am would be the perfect time because we are all probably up at the same time.  My life living with autism has made me appreciate tiny victories.  If you had seen use years ago I wonder if you would have wanted to be our friends.  My Michigan family recently saw my children.  They were so impressed to see  Harrison growing up and taking care of his sister. They were also impressed with the increased language and social interaction from Sydney with the family.

Special need parents have many secrets some they will share and some are too painful to share with even their closest friend or family member. We will always meet people with suggestions or parenting tips.  Don’t get mad at them.  Invite them over so they can demonstrate those parenting techniques for you.  I bet they will never come. We have to learn to take time for ourselves because our children need us.  And when we do have some “free time” enjoy it and don’t feel guilty.  These are the cards we were dealt, so put on your poker face and play your hand.

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Too tired to be embarrassed, just need acceptance and a smile.

~Brooke

 

 

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