an autism journey

Archive for July, 2012

What They Don’t Tell You at the Diagnosis

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.

Autism Lows

In the world of autism, there are ups and downs. I prefer to share the ups. That is what I want to dwell on… the good things that happen, and there have been plenty of them lately. My son has made tremendous progress this past year. I have found new ways to connect with him, his language is improving,  and his personality is shining through.  These are the things I want to focus on…. The things that give me hope and make the day a little easier to carry on. The ups are just so much easier to talk about…. And the lows, well they are at times just so low, they are difficult to share. The reality is however, that there are plenty of lows.

This week has been hard, very hard. Skills we thought we had mastered seem to be challenging again. It is an ugly word at my house… regression. Maybe he doesn’t feel well, maybe something is bothering him. I don’t know. He doesn’t have the communication skills to tell me. Although I feel a deep bond with my son…. A connection so deep that it is unexplainable…. I still can’t possibly read his mind to understand all that he can’t say… all that he would like for me to know. That breaks my heart.

This week, he is unhappy and he is angry. It is tough to see him  this way and feel so helpless. He knows. He knows what is happening to him and he can’t stop it. He reacts with anger. Not the kind of spoiled, “I didn’t get my way” anger. It is the “I am so tired and lost and hurting and don’t know what to do” anger. He falls apart, and then he cries and places that little hand on my face and says….”what happened?”  He looks at me longing to understand what is happening to him and I am at a loss to explain it and I lose it. I hold him and cry with him, simply because I don’t know what else to do.

The ugliest thing about autism is it often causes depression. It causes anxiety. It causes anger. It causes pain, and loneliness, and hurt. Yes, even to a young child.

So, why am I writing this? I want people to understand the reality of autism. I want other parents facing autism to know we are going through the same things they are. We are fighting like everyone else. In case you haven’t seen it… there are some parents (including a certain celebrity parent) who seem to want to take advantage of the situation for their own gain. Apparently their children were blessed to have such great mothers who fought so hard to “cure” their child…. And now they are making a profit on it, and the rest of us? Well, we are just not doing enough.

Truth is there is no cure. Although some kids respond very well to treatments, others don’t… and dog gone it…. This is one arena where parents should NOT criticize other parents for not doing enough or for choosing one therapy over another. I am fighting hard for my son and I pray with all my heart that God will choose to bring a complete healing to his life, but if he doesn’t heal my son or another child…. It is not because a parent didn’t do enough. If the diet worked for your child, great… count your blessings, if you tried acupuncture or chelation or this therapy or that and were met with success ….. fantastic. You made the choice to do the best for your child. So are the rest of us. Autism affects every child different and so do the treatments. Just because one child is more severe than another, doesn’t mean that their parents did something wrong. Period. (Stepping off my soapbox now)

 I also want to make others aware of what autism really is and how it affects a child. My son fell apart in church this morning. It was not a pretty scene. We were fortunate that the few people who witnessed it, were understanding.  Not one single person criticized him (or me). Sadly, this is not the norm. It just happened that at that moment, the people who saw it have known him for a long time. They may not always understand, but they accept him through the good and bad. They often don’t know what to do, but that is ok. As a matter of fact, the other teacher in the room this morning was at a complete loss for what to do, so she simply hugged him, told him that she loved him and stepped out of the way to let me help him. That was exactly what both he and I needed at that moment. Too often people stand by witnessing a meltdown and simply judge…..

If you think you understand autism, think again. Try for  a brief moment to walk in their shoes, to understand their world. If you have someone you know facing autism. Love them. Accept them. Don’t worry about the right thing to say or do. Just be there.

If you do not know someone with autism, make yourself all the more aware, because you probably actually do know someone with autism…… or at least are around them at the grocery, at the park, at church. Don’t judge them. The current rates for autism are 1 in 88 children. With those odds, it could be your child or  grandchild, your niece or nephew, your best’s friend’s child or your neighbor to be the next one diagnosed. Give it a thought before you criticize.

As for us, we will fight on. A new week lies ahead and we put the past week behind, waiting for the next great victory…. It will come. We’ll keep you posted.

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