I never expected to be in this position so soon, saying goodbye to my son.
Jeannie Langston's story is one that hits home for many families. Despite all the media attention and more accurate diagnoses of the last decade or so, the causes and treatments for autism remain largely a mystery. Read about this mother's journey and feel free to share your own.
Saying Goodbye
I
never expected to be in this position so soon, saying goodbye to my son. He came home from the hospital so
perfect. After spending a week in
intensive care, it was so good to feel him in my arms. Joshua was a little over a month early, but
that didn't stop him from meeting his milestones.
He sat up, smiled, rolled over, stood, and
even knew all his alphabet by the time he was two years old. Then something happened. I'm not sure what happened, I can't even
pinpoint a date when it happened. I just
know that it happened. At first he just
seemed distracted and distant, then it got worse.
Joshua was a year old, he had taken his
first steps and he was giggling. That's
how I want to remember him. His big
brown eyes so bright and alert, staring into my eyes. The big hugs he gave me when he finally
reached me.
I miss my son.
He was two and a half or three years old
when I really felt him leaving me. He
had good days and then he had days that were not so good. Joshua wouldn't look into my eyes any more,
he didn't want to hug me or hold my hand or kiss my cheek. He didn't like to be touched at all and he
would scream when anyone tried to touch him.
Joshua forgot his alphabet and he hardly spoke at all. When he did, it was one word at a time. "Food" or "Drink" or
something else that was simple. He used
to say complete sentences.
We saw so many doctors, they kept referring
us to other specialists, nobody could tell me what was wrong with my son. Joshua was physically perfect. Finally, we were referred to a
psychologist. She had an answer for
us. Autism. There was no cure and there was no definitive
cause for it. There were treatments that
showed improvements, according to studies in obscure magazines and medical
books. Each case was different so each
treatment was tailored to the child, the psychologist told us.
I attended a few support groups, while my
husband stayed home in denial. I kept
getting the same answer from all the other parents. The treatments help, but it doesn't bring the
kids back. They will have some problems
for the rest of their lives and no amount of treatments or therapies can change
that.
Forgive this tear stained letter. I just was not expecting to lose him so soon
after getting him. He's only four years
old, and I had to say goodbye to him a year and a half ago. It's hard to have him physically here, but
not be able to be a part of his world, and not be able to have him in my world.
****
Jeannie Langston has a Bachelor's Degree in Social Science with a Concentration in English and Language Arts, and an Associate's Degree in English. She is a member of Golden Key International Honour Society. This is her fifth year judging the IBPA Benjamin Franklin Awards and she has participated and won Nanowrimo for the last 5 years.
Visit Jeannie's Website:
Jeannie,
ReplyDeleteThis was a very moving story. Thank you for shring it. It must be very hard for you to have your child there, yet not there with you.
TJ
Thanks TJ,
ReplyDeleteFor a lot of families, this is exactly what it's like. I'm lucky because both of my kids are on the high-functioning end of the spectrum. My daughter would stay in her room alone 24/7 if we let her, but she can be with us when we want her to. My son has the opposite problem. He is very clingy, he doesn't want to be alone. It wasn't until this year (he's almost 8) that he will stay in his room to sleep, most of the night anyway. He still wakes up and comes in my room. I'm his security blanket according to his therapists. Thanks for reading it.
Jeannie
Last Friday, a woman spoke to our church moms' group about her work as a missionary in the Dominican Republic and about her twin girls, who were born premature. They discovered they were deaf a few months later. Hearing her story and Jeannie's really helps me put things in perspective. Thanks so much for sharing, Jeannie!
ReplyDeleteBoth my kids look so normal when you see them either out with me or in their classes where they are comfortable. You have to watch my daughter for a while to see that she's a bit quirky. My son he's such a character, half little professor and half court jestor...lol. when something takes them out of their comfort zones and they have meltdowns, people look at me like I am a bad parent, or my son is so out of control I don't know how to make him mind in public. They don't see that the sudden noise from the phone in an already crowded store was the one thing that pushed him over the edge. His cousins don't understand that a simple thing like spending the night in a house without me is so scary for him it causes panic attacks (I know its me because he will sleep in any bed so long as I'm with him). They have made fun of him for it. I wish that tolerance was the norm in our world, but sadly its not. Thanks, mysti.
DeleteJeannie,
ReplyDeleteI can relate to everything you say.
One of my nieces is autistic, and her mother, a special education teacher, has worked with her every day of her life on her ability to relate to others. I know from all I've read about it that autism isn't one syndrome but a range of conditions. As you say, each autistic child responds differently. I just want you to know that my niece graduated high school and now is working in a sheltered environment. She's warmly affectionate with those she knows and has some daily living skills (doing laundry, cooking, that sort of thing). But she will never be able to live alone or completely support herself.
I worry about that for my daughter. She can do for herself, but she needs the reminders. Put on deodorant, clean up your dirty dishes, go brush your teeth, that sort of thing. One of her problems is personal space, you know how most people give a respectful distance based on how well you know a person? She doesn't have that I am constantly telling her to move back. She doesn't get sarcasm or jokes, she doesn't realize when she is annoying or angering someone else. Next year though, she gets to take a social skills class. She has been in spec ed since kindergarten, but she was just diagnosed with aspergers about 6 months ago. How do you find places like that? Thanks.
DeleteYou've given us a good look at the realities of autism and Aspergers. My heart goes out to you, not only for your present situation, but all the worries for the futures of your children.
ReplyDeleteYou're right, most people don't stop to think about why kids are acting out. Other kids can be so cruel without realizing how much their comments hurt.
Your children are fortunate to have such a caring and loving mother who understands their needs.
Thank you for sharing your story.
Thank you so much, I feel I am the fortunate one. My daughter trusts so completely and believes in the goodness of everyone. Even if someone insults her or hurts her, she is convinced they didn't do it on purpose. She is so focused on her path that she doesn't notice when the kids around her make fun of her (a classmate has told me they make fun of her, but when I ask her, she says no one makes fun of her or bullies her). My son has no fear, but he is such a little pleaser for certain people, me, his daddy, his teacher. Everyone else, he doesn't care whether he pleases them or not. Which has taught me that I don't have to please everyone. So I have learned a lot from them both and I am so blessed to have them.
DeleteWell done, Jeannie! I admit to being more in the dark than knowledgeable, partly because I had my own issues to deal with and learning more about autism was just too much. BUT, all the same, Aspergers and related challenges run in my son's biological family. His half-brother, born after him, is a high-functioning autistic child, Aspergers -- that's how it was described to me. When they would visit, his silence astounded me. Alternated by some very wild, loud, super-meltdowns. I don't know how she coped, but his mom seemed to take it in stride, she remained a steadfast advocate for him throughout his life. He is about to graduate high school, I think he's doing okay, seems to have a solid foundation, thanks to her, for living a full life.
ReplyDeleteThat is great to hear. My daughter has aspergers, and she is mostly quiet, but when she's at home, she is smiling and giggling and trying so hard to play with her little brother. She has been trying to make jokes, and if you knew her, she has no sense of humor, she doesn't get sarcasm, she doesn't get jokes, but at home she tries so hard. She has been around us all her life, so she is just now understanding when we are joking, but she can't tell when someone else is joking. Her teacher last year asked me if she ever smiles at home because he said she never smiled at school. Next year she will get to take a social skills class, which will hopefully help her. She doesn't really have meltdowns like my son (who has PDD- pervasive development disorder, which is basically sensory processing disorders that make it difficult for him to interact in certain environments). She did have several anxiety attacks last year at the thought of changing schools. She's in spec ed and she had had the same spec teacher for three years, so she was especially upset about leaving her. She adjusted to middle school fairly well though. Thanks for reading and commenting.
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