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What they Didn't Tell Me About My Child's Autism ... MUST READ .............

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What They Didn't Tell Me About My Child's Autism...
Here are some things you will not find in your research on autism:

You will not learn how this diagnosis will affect your marriage or other members of your family. You will not be told how it may fundamentally alter your perceptions of what is "normal," how it may ch...ange your view of human beings, how it can force you to question small talk and why we behave the way we do, how it will transform your outlook on life, how it will change you, how your life and everything you assumed to be true, is no longer what you thought.

Having a child with autism may cause you to feel things you never dreamed possible. You may know moments of joy and moments of despair you could not have imagined. You may find yourself going to untold lengths in the hope of helping your child. You may feel distracted, unable to concentrate. Your work and career may suffer. You may learn what it is to be sleep deprived. You will come to know what it means to feel desperation. You will know sorrow in a way no one can prepare you for. You will know happiness in a way no one can prepare you for. Sometimes you may feel both sorrow and happiness within the same day, within the same hour, within the same minute.

You may spend money you do not have on yet another treatment, yet another doctor, yet another specialist, yet another therapy, yet another intervention, all the while rationalizing that if it helps, it will all be worth it. You may contemplate doing things you would have scoffed at before your child was diagnosed. You may find yourself trying things that defy logic and have no medical basis. You may listen to implausible, anecdotal stories and think -- we will try that next. You may dream your child is speaking to you in full, complex, beautifully self aware and revealing sentences. You may wake from those dreams believing for a few seconds they were real and not a dream. You will pray that you might dream again. You will welcome sleep, as you never believed possible. You may ache with sadness because your child is crying and in pain and your presence brings them no solace. That ache may become unbearable when your child hits themselves in the face, bites their own arm or hand, punches their own legs or stomach. You may question every maternal instinct you have.

You may feel ecstasy from being hugged, unprompted. You may feel the exquisite joy from having your child reach for you, ask for you or look at you. You may know the joy that comes from seeing your child work so hard at something that does not come easily to them. You may celebrate when they use the bathroom unaided, drink from a cup, sleep for more than a few hours without waking you, try a new food or simply acknowledge your presence. You may feel a gratitude you would not have believed possible. You may cry from happiness when they say a word, any word, even if you are the only person who can understand what the word is. You will know what it is to appreciate commonplace things -- eye contact, the correct use of the word "me," "you" and "I," physical contact initiated by your child, a word, any word spoken or a smile.

You will feel a fierce love for your child that seems to come from a place that is not of this world. You will know what it is to love unconditionally and you will understand what that really means.

What have you learned that no one was able to tell you in your research of autism?

- Ariane Zurcher via
by on Mar. 28, 2012 at 8:00 PM
Replies (31-37):
by Member on Feb. 8, 2013 at 12:09 AM
2 moms liked this

i have to say think you i be live you spoke it all.. it is so Lady's please pat your self on your back cause you are all aw some..i learn some thing new every day.

by on May. 10, 2014 at 2:33 AM
2 moms liked this

NO ONE.........NO ONE has your child's best interest at heart like you do.  Not the teacher (who takes his temp every day to make sure he don't have a temp..just in case they can send him home)
Not the Sunday School teacher..(who says the children are not allowed to put toys in their he has to leave.) 
Not even your family (who insists that with MORE discipline he would STOP that stimming...just spank him!!!!!! yeah that is the answer.)
Not even strangers (who look at  your child in the store and wonder why he is making odd noises.. or why he won't talk back to them when they talk to him.. or why you can't CONTROL that child that is having a meltdown..)
Not even his mother (who just can't deal with her ASD child JUST can't handle the situation, but can find it in her heart to deal with and keep her NT child.) 

You learn you can't trust people..even people you liked.  So you become MORE and MORE isolated.. 

TANSTAAFL- There ain't no such thing as a free lunch.

by Member on Dec. 4, 2014 at 3:10 AM

So absolutally true.

by Member on Dec. 5, 2014 at 7:37 PM

Its so true and fucked, but its spot on.

by New Member on Dec. 12, 2014 at 1:41 PM
Noone really understand u become ur own isolated team because noone says it out load but the pray to God u dont bring ur child with you when the family gathers.noone ever ask to spend time with the child because theyve seen a meltdown and they are scared or u have the one saying all they need us an ass whoopin.smh even teachers blaim us the parents because they cant controll the child in a structured setting.your just alone ppl verbally suggest things.i tell u when i was growing up friends and families helped out thesr days they hate to see us coming
by New Member on May. 21, 2015 at 5:27 PM
1 mom liked this
That was the perfect illustration of a parent of an autistic child. What a beautiful post. I have felt that sheer joy and utter sadness at once. I have felt the incredible hope fill my chest when my little boy aCcomplishes something huge for him but so minor to parents with typically developing peers.I have felt an intense fear of my mortality as well. It is a ROLLERCOASTER.But it is worth every second. Nobody will ever know quite how special and precious your relationship with your kid is unless they have a child close to them with the same obstacles.very well written post! Thank you!!!!
by Member on Jun. 29, 2015 at 10:18 PM
1 mom liked this

 They do not tell you how the schools are not really equipped to handle special needs students. By law they have to provide services but the teachers are not really well trained on special education.  The education system makes teachers have to hurry and get through lessons but they do not have time to see if all the students actually get the lesson.  So the child who needs more help does not get it, feels left behind and shuts down.  Starts to hate school and gets further behind.  My son won't even go to school anymore. So this year we are homeschooling to see how that goes.

They do not prepare you for the bullying your child will do through, the stares, the "why is he so wierd" questions, the kids wont play with him eventho it took him a long time to get the courage to ask them to play with him.  Then the heart break you feel when they walk away from him and the anger that you feel that they hurt his feelings.  You want to strangle them. Tell them that do you know how much of an accomplishment that it was for him to even ask you to play with him.  And then try to answer his question about why those kids won't play with him.  And anger goes back to heart break.

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