an autism journey

It is really rough the day the doctor tells you that your child has autism. They will throw out a lot of information to you, but as a parent who has been on this roller coaster ride for awhile now, let me tip you off to a few things that they don’t tell about…….

They don’t tell you that nobody will understand what you are going through except for another autism family. People will tell you they get it, but they don’t. You will lose friends.

They don’t tell you that you will probably never get a full night’s sleep (or even a solid couple of hours)…. Ever again. You will long for sleep…. Oh sleep…..

They don’t tell you how hard it will be at times to go out. You will give up a lot of activities. An exciting adventure may become a trip to McDonald’s… on a good day.

They don’t tell you that everyone will start throwing out their theories of what caused your child’s autism and add what you did wrong to the mix to make you feel guilty. You will probably get caught up in it as well, before realizing that you don’t have the time or energy to worry about the why… you are living in the what now…..

They don’t tell you that there are far too many doctors, therapists, and scam artists trying to make a quick buck off you. They will promise you the moon if you just fork over the cash for the latest and greatest treatment that will make the world right again. They will also quickly disappear when it all goes wrong. You might even lose a lot of money to a service dog agency backed by a cola company that turns out to be nothing but a great big lie… oh wait, that is probably just me.

They don’t tell you that things will indeed get worse than they are right at that moment. Your child will get older, stronger, and smarter, but the autism will only fight back all the harder and at least some of the time, it will win.

They don’t tell you about all the new creative games you will learn to play like hide and go seek the poo. I will let you figure that one out on your own, but you will need a good carpet cleaner and some new ways of cleaning your couch. You will learn a new skill here.

They don’t tell you that you will go through several doctors, therapists, and teachers trying to find one who actually believes in your child. Oh, and yes, they will know exactly what you think of them because your patience is a little low.

They don’t tell you that you will learn to cook two meals… one to meet your child’s needs and  one for the rest of your family…  it won’t matter though, because your child might refuse to eat anything but pop tarts for weeks at a time.

They don’t tell you that you will become a crazy person going off on one too many insensitive jerks that tried to interfere with you getting your child the help they needed. Insurance companies, school district reps, and therapists might need to warned before you talk with them that you are indeed a parent living on the edge.

They don’t tell you that your child might make tremendous progress after a full year of hard work, only for it to be taken away overnight by an ugly thing called regression and you will have to start all over again. You might break something when you figure this one out.

They don’t tell you that your most used words might turn out to be things like… get that out of your mouth! don’t lick that door knob! and no, we don’t go around smelling people’s hair! You will probably only understand the full nature of this many years after the diagnosis.

They don’t tell you about the bruises you will sustain  during the meltdowns that will rule your world.

They don’t tell you how hurtful and critical others really can be to both you and your child.

They don’t tell you that with as much research and knowledge that you are going to gain, you could probably earn a doctorate yourself. Far too much time will be spent in front of a computer. Despite what they tell you… you will actually know more than the so called “experts.”

They don’t tell you that you will indeed fall apart almost daily. You, yourself, will lose it. You will scream and cry and swear to your spouse that you don’t know how to go on another day. You will be angry and hurt and lonely. You will want to quit…. Again and again and again…. But you won’t.

 You won’t because they also don’t tell you the amazing love that you will feel for your child.

They don’t tell you about the bond that will become so deep that you are sure your child has become more like an extended part of your own body rather than a seperate person.

They don’t tell you that even if your child never speaks, he or she will show you a love like you have never felt before.

They don’t tell you about how hard your child will work to show you and the rest of the  world that they can indeed overcome.

 They don’t tell you how your other children will step up and be their sibling’s biggest advocate.

 They don’t tell you how just when you think you can’t go on, that child will amaze you with a smile, a giggle, a hug.

They don’t tell you about the days when your child connects with you and you know it is all worth every bit of effort you ever exerted.

They don’t tell you how many times a day you will thank God for this amazing blessing He has given you.

They don’t tell you that you will become your child’s best doctor, nurse, therapist, and teacher.

They don’t tell you that you will find a strength from somewhere and you will go on. You will keep fighting and you will be the parent your child needs you to be.

They don’t tell you that your life will forever change, but you will settle into a life that although may not be an easy one, it will be a good one and that what you give up will be replaced by something better. They don’t tell you that. You will have to find it out on your own. Hang on… it will be a wild ride.

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