A
female
age
41-50,
*omof21980
writes:I know this site is for love, sex, and other questions such as this, but I have another heartache I would like to see if anyone can comment on. I have two daughter's 12 and 5 yrs old. My youngest has ASD Autism Spectrum Disorder. She was diagnosed right before her 3rd b-day. It was a devestating blow at first. It felt like all my dreams, hopes, and faith went straight out the window or that I was being punished for something I did in the past or whatever. I have come to terms with it. She is in a special needs program since she turned 3yrs old. She has improved greatly, started feeding her self, speaking a little, more engadged with other kids etc. She's even the best student on her routine in class per her teacher. I'm blessed and thankful she isn't severe and is progressing, but I sometimes break down and cry. I feel upset and pissed off that she has to deal with this. Yes, I know theres other things a lot worse than autism and I'm greatful were not dealing with anything else. I just can't help but worry about her future as in what will happen to her when your father and I aren't around. What will happen when she is elderly, will she be alone, cared for or abused? I'm so angry and feel bad since my husband wants another child, but I'm scared to have anymore. I have done research and autism can happen to any one. Neither sid of our families have mental disablilites or bad genes. I'm just scared and feel bad I'm depriving my husband of another child. I just don't want to add or possibly add to the stress of having another kid who may have autism. I feel so sad sometimes that I feel I'm not worthy to be dealing with this. I ask God why us, but I know he has nothing to do with it. He doesn't create bad things to happen, but he will let you go through a test to see how you handle it. I know I can handle this and have for 5 yrs already, I'm just trying to keep my guilt and sadness from runing my marriage and relationships with my family memembers. I just wanted to vent on here. Thanks. Reply to this Question
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reader, momof21980 +, writes (11 October 2012):
momof21980 is verified as being by the original poster of the questionThanks for all the kind, and uplifting responses. I actually cried reading these, but in a good way! I am looking foward to getting or finding support to help my family and I deal with this and making the best out of my daughter's situation. Thanks again and God bless.
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reader, anonymous, writes (11 October 2012): Maybe these guys can help you totko.org Gave me advice on my autistic son. You can email them and follow them on twitter for advice.
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reader, So_Very_Confused +, writes (10 October 2012):
 So you went to Holland when you expected to go to Italy.
Me too. I have a 28 yr old PDD-NOS child. He lives in a group home. He goes to his program 3 days a week and works in a sheltered workshop 2 days a week... Much like a toddler with hormones.. it's very had for me too...
Now about my comment on Holland... It's very hard to have a disabled child. You feel cheated. You worry about coping. WE worry about my son. My younger son heard us (my ex husband and I) talking once when he was ten about how he would have to be responsible for his brother when we passed on (thankfully we were very young parents)... and he took it to heart then.. but all we meant was that he would have to oversee the financial aspects of the trust funds my family has set up for the kids...
Anyway back to going to Holland... there is a lovely piece on having a disabled child when it's not expected (and there was a time when you didn't know you were having say a Downs Syndrome child till he/she was born)...
here's the link I found when I googled "holland not italy"
http://www.journeyofhearts.org/kirstimd/holland.htm
and the part that is critical:
I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
My son is 28 and I still cry when I read this...
KNOW you are NOT ALONE!
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reader, anonymous, writes (10 October 2012): Here let me share my storyWe have son who is 19yrs now and was diagnosed with autism when he was 8years old, he has semantic pragmatic disorder which makes communication or his understanding what being said very limited, he also has ADHD and global learning difficulties.Yes, we have cried, I guess we had to mourn the child that could have been, while being thankful and loving the son that we do have.Times are general good but with all children, who grow their are issues and hurdles that we must jump over, and with our son these have just been that little bit higher than most .We also went on 15years later I may add to have two daughter one is now nearly 5 and attends school and youngest is 1..We also worry about what will happen when our son gets older.. Our oldest daughter is very wise for her age and says she will take care of him, what I would want is for our son to remain in our home with network support from his siblings, social work providing home care, CPN providing mental health and support and charities who provide friendship buddies, and his sisters making sure that this runs smoothly, and taking an interest his health etc.That doesn't mean that their life's will be dominant ant by our sons, but that their love and affection for him will be why they help him.. He is so loving to his sisters that its only fair that they can offer some back without them feeling its a burden.Family should never be a burden .. Sometimes a pain haha but never a burden... That is what we hope for, the future is always uncertain and we can only do our best to ensure that we have as much in place as we can..I hope this has helped somewhat .. If you need to know more please ask.
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reader, AuntyEm  +, writes (10 October 2012):
 I am so sorry for the worry you are going through. I am sure it is all consuming and must be awful.
Any motherworries about her childs future and if that child has additional challenges, it's even harder.
I guess you could look at it two ways. Having another child would increase the sibling pool and your child would benefit from a larger family group both now and in the future, but maybe the way you are feeling makes it not the best time to have another child. There is always a risk for anyone that their child could have some or other condition and it is a risk you have to decide to take.
Another thing that may give you peace of mind (and bearing in mind that your child is only three)is to plan a supportive future pathway that will enhance your childs life as she goes along. That would involve saving some for her future (not easy in the current finacial climate...but do able seeing as you have many years to achieve this).
You will certainly have already been in touch with organisations and support groups and maybe it would be a good thing to start a group for other families affected by autism so you can unleash and share what you are feeling.
Sadly nobody's future is 100%guaranteed and even the most wealthy gregarious socially gifted person could end up alone....you just cannot read the future, but you can prepare so that your daughter can maximise what she has, who she is and enjoy life within the difficulties that she may have.
Do not feel guilty, you are doing the best you can and it's natural to feel grief at somethings lost...it's how we rid ourselves of pain so we can grow and strengthen and deal with what is in front of us.
You have a beautiful precious little daughter within a loving caring family...use that knowledge to face your challenges and stop being so darn harsh with yourself, because you don't deserve that.
Vent on here as much as you need to...the aunts are here for you xx
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reader, SceneXaddicted +, writes (10 October 2012):
 Just always remember, she doesn't understsand the terms of her condition really, she is just happy and living a childs life. People only learn to compare themselves to others because others compare themselves. In time once she is older she will have to learn that she is different, but we all are, that is the wonders of being human. She is happy, and obviously loves school and loves to learn and I know she loves you for loving her for who she is. That is what a real parent does. I know it can be frustrating, but its not your fault. It isnt anyones fault. Dont let it ruin your marriage, your daughter needs a strong family, she needs to grow up and see what its like to be strong, so she herself can be strong. The world is a cruel place sometimes, you have to stay strong and never let that little girl down. God wouldnt give us anything we cant handle. Remember that. God gave you her as a gift, because he knew that you would be the right person to love her for who she is. Never forget who you are, and whats in your heart. If your family and friends cant accept that, they are not good at heart.
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reader, anonymous, writes (10 October 2012): Hi there! Don't worry your not alone with this kind of problem.There are so many parents who share the same situation with your child and I honestly think the best way to deal with it, is acceptance. Pray a lot, cuz i know for sure how hard it is for you, Some of our hurts can only be totally deleted by praying and crying out to God.For sure the Good Lord has his best interest and reason why He gave you a special child like your daughter.God knows that u are a great mom, you love unconditionally, you will be able to handle it according to his will.Some children who have the same problem they do improved and later on live a normal life. Don't worry about the future, let God be the one to lead you and your family.Never give up, hang on, and also be considerate to your husband, he mean well, and a 2nd baby is a good idea. It doesn't mean that your first child has asd the 2nd one will have 2.Never think that way, don't deprive yourself for happiness.If you will have a 2nd child and that child turns to be a normal one, i am sure that child will be normal (i trust God).That child will be the one to take care of your other daughter when u and ur husband can no longer take care for her.Think positive. Don't allow stress and worries steal your happiness. Get some help, research about asd, participate with something that will help you understand your daughter's situation. Instead of worrying, Do something productive..Most of all Pls. Pray a lot......I will pray for you too, though i dont know you.. But I will.. have a little faith in yourself...God Bless...
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