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 change 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?
For more on my daughter, Emma's journey through a childhood of autism, go to: www.Emma'sHopeBook.com
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.A Few Autistic Questions about Freud, Marx and Darwin.
http://30145.myauthorsite.com/
A pediatrician asked me, not long after Emma was diagnosed, what I was holding on to. I thought he was joking at first as I had taken her to him because of her chronic and severe constipation, which did not change no matter how many epsom salt baths or prune juice I gave her. When I didn't answer, but looked at him with a certain degree of confusion, he explained, "Often mothers are unconsciously holding on to things and it can contribute to their child's issues." Bettelheim, thankfully, is no longer; sadly there are others who are eager to fill his shoes. Fortunately none have the authority Bettelheim did. I cannot imagine what you must have gone through. Really appreciate your comment and link.
A Few Autistic Questions about Freud, Marx and Darwin
http://30145.myauthorsite.com/
I loved everything you wrote. Thank you for commenting.
I also learned that the people who want to force me to call him "differently abled" should stay far, far away from me. I know some parents will feel differently, (and I respect their choice about it) but my kid is actually DIS-ABLED by his disability. It brushes away the buckets of tears, thousands of dollars spent, and moments of agony when someone cheerily informs me that his is just "differently abled" No, your bouncy little boy with dyslexia is "differently-abled". Mine is actually disabled.
Celebrate the little victories and be patient, yet persistent. Special Needs kids can continue to develop skills way into adulthood. You will be older and a little slower after 18 years of this very demanding journey. Rest and decompression is a well deserved reward. Do you really want your Special Needs child to be dependent on you until you die?
Also, some children have a more involved disability on the ASD (autism spectrum disorder) than others. It can run from PDD-NOS (pervasive developmental disability-not otherwise specified) to classic Kanner's, and people often respond differently to different therapies and educational approaches.
Some children can grow up to be independent, and others never will be. That is why we need to not allow politicians to reduce or remove the supports needed for families and individuals, and to provide sufficient funding for them. We also need to continue to push for insurance companies to cover more of the costs of interventions needed, including occupational and physical therapies, as well as group homes with well-trained staff.
How wonderful that your child is now independent. Sadly many parents will not be able to say that, no matter how much they "let go," no matter how much they work to help their child get the best services available, in fact their child's lack of independence has nothing to do with them at all and everything to do with the child's very specific neurological issues, which can be severe.
(soapbox away... will bust it out again tomorrow)
I hate that so many people use the diagnosis as a free pass for bad behavior toward others.
I think the most important thing that parents of recently diagnosed children should be told is that they should parent the child they have, instead of trying to parent a child that has never existed. The label doesn't change who your kid is, it just gives you and that child the tools to get the support and information you both need.
Also - Aspergers is very different from other types of autism, such as the type that prevents or severely limits communication and connection. People with Aspergers are able to connect and communicate, just in unique ways. I do have a dear friend with Aspergers, and I would be sad if he were suddenly "cured." He wouldn't be him anymore.
However, people with severe autism seem trapped in isolation and pain. It is so different, and something that desperately needs to be cured, both for their sake and their loved ones' sake.
I realized that at that time I was all alone and that I was going to find a way to get through to my son. I learned that he was just like the "normal" kids..we just had to teach him everything at a slower rate and with a lot of repetition and patience. I remember one of Ryan's therapist telling me that he absolutely needed a strict structure and routine or he would not be able to cope and would become aggressive and rule the house...well....I politely told her that if that was the case...Ryan was born into the wrong family! Ryan has adapted just fine to our "dysfunctional" routine and I honestly believe that it has helped him to be "himself" and not just a robot! Ryan does have routines when it comes to getting ready for school, going to bed at a certain time and certain activities he is allowed to do.. we just let him be a kid and he loves it!
"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."
Amen.