To parents of Special Needs kids: How do I get over the heartbreak?

Question

My six year old son has an unknown disorder. Basically, he is mentally only about 3 or 4. He is in kindergarten with other special needs kids. Because he has few outward physical symptoms, my husband and I have been slow to accept that his condition is permanent and that he will never be a "normal" child.

Yesterday he won a gold metal in the Special Olympics. Don't hate me, but I was crushed. I cheered him on, don't get me wrong, but inside it felt like the whole event was pushing me harder to accept the reality that I have been trying to avoid.

My sister has a 10 month old son and recently boasted on her blog about how he is already walking and how he will be an Olympian someday (not knowing about my son's medal, just coincidence). I was further hurt. I just can't stop crying. Does it ever get better? What can I do to get past this?

Answer 1

We always knew our daughter had delayed everything, and she was in early intervention programs beginning at age 3. When she was 7, we were told that she was mentally retarded because she only has an IQ of 50, and she would always mentally function at half her age (meaning when she was 12, she would function at a 6 year old's level). When my husband and I were told this we went to the car, and sat there and cried for about 5 minutes. Then we stopped, because we realized she was the exact same child she was before we knew what we were told. She has brought us more happiness than any child could. She has the biggest heart, and that to me is the most important thing of all.
I often would question why I would be given a child like her..what did I do to deserve a mentally disabled child? But the truth is, God gave me more than one gift..because along with her, came the lesson of unconditional love. It made me grow up real fast, and learn to be completely selfless, patient, and caring.

Answer 2

it is hard as a parent to accept things like this. i think it will get better. instead of focusing on what's wrong with your son focus on everything that's wonderful and the joy he brings to your life. my son was diagnosed with mood disorder and before he was diagnosed with that they thought he had OCD i'm a single mother so being a parent is already very challenging but then there is the added element of him being a special needs child. luckily it's controled fairly well with medications but it is still hard to deal with knowing something is 'wrong' with him. but i made a point from the begining to make sure i do whatever i can to not make him feel uncomfortable about it and acting like it's nothing to be ashamed of. i don't let his disorder define who he is and i don't use it as an excuse for him either. i treat him the same as i treat my daughter. before his medications he had had many outbursts in public and i got many stares but i ignored them and tended to my child. just because your son won't be able to do everything that kids his age do doesn't mean his accomplishments are any less than a 'normal' child. if anything his achievments and accomplishments are even more meaningful and worthy of praise. i really doubt her son walking at 10 months is any sign of inteligence or whether or not he'll be in the olympics. too many parents boast about how quickly/early a child learns to do things with out taking into consideration that every child develops at a different pace. i know some extremely smart people who didn't walk until much later and some really dumb people who walked early. if you have any professionals or maybe if you go to a church and you have a preacher you can talk to i think that would help you get past these feelings. i promise it will get better and a lot of it is your attitude towards it. besides who defines normal? your child is unique and is just the way he is supposed to be.

Answer 3

I am sorry that I don't have any advice for you. When reading your question it immediately made me think of an essay I read when taking an early childhood special ed class. I am sure that you have read the essay but just in case you haven't I figured I would post it anyway.

I do know that it is okay to be disappointed and angry and sad. You really do need to go through all the steps in grieving like you are grieving a death in order to move forward.

Take Care. SD
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WELCOME TO HOLLAND
by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a 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.

Answer 4

How would it be if he was gone from your life all of a sudden? Appreciate him and love him. The truth is you pay a heavy price in society for having a special child, feeling like a social outcast is very real and few understand but when you get past that something wonderful happens. You enter your child's world where this stuff doesn't matter and only love and acceptance become the focal point. With my autistic son I am planning to sit on a crate and talk to him in heaven one day... and ask... what the hell were you thinking drawing a life size Thomas the tank in texta on the wall? He gives me great joy every day even though going to the supermarket is a near death experience...Work on the logistics to make life better. Your little boy has the capacity to bring out your best... hang in there...you are doing great!

Answer 5

I will pass but very slowly. I have a son, that was abused by his father, put in a coma, and expected to die. He was almost two at the time. He is now six and surpassing everyones expectations. He will forever be disabled both mentally and physically. Like your son, he is six but he has the mindset of a three year old. I

In the beginning it was very hard to accept. I wasnt mad at him, just mad at his father. Then the realization that I would probably be taking care of him for the rest of his life (which is not necessarily true) set in and I was depressed. But now as time goes on and he makes progress at his own pace, I tell myself that I am lucky to have him here, he is my angel and I love him to death. No matter what I do, nothing will change that. You have to remember that everything happens for a reason. And although it may not be clear to you what the reason is just yet, you just need to keep the faith and keep up the love.

No one is questioning your parental skills or your love for your child, because its all new and it is not supposed to be easy. But as your son grows and meets new milestone, you will see how lucky you are.

Answer 6

I think you have a lot of great answers so I just wanted to tell you to spread the word to other parents who are making the same mistake with their children. It's easier on a child to learn earlier to sleep on their own. It damages them more once they get used to having someone there as a constant. This answer worked the best for me, I did this with my children at about 14 months...minus the kiss in the palm part.......it works. Tell her you are going to give her a kiss in the palm of her hand for her to hold all night and it will keep her safe. Then sit beside her bed until she goes to sleep. The next night move the chair further away..just keep reminding her that you are still there and she is holding your kiss. Finally move just outside the room and tell her you are never far away. It takes some time. But fear of the night and being alone is very real for a small child.

Answer 7

why would a child so full of love want to come into this world to be like everyone else?
i have a mentally challenged older brother. trust me when i tell you these are NORMAL feelings you are having. my mother still has them and my brother is over 40 and lives on his own (with help occassionally). he is such a social butterfly! he knows more people than i do. he can't go anywhere without at least 3 or 4 people saying "hello. how are you today?" .
they teach us patience and love and how to see the best of the situation.
don't give up on him, though. he can learn what he needs to learn as long as he learns it his way and no one else's way.
time passes and you will see him growing into his own person. you are a great mom. don't forget it. people like him usually have a tendency to pick up on emotions of the people around them.
the world would be a boring place if we were all the same.

Answer 8

Rejoice in your sons accomplishments and triumphs. Share these with your family, esp. your sister. We are all unique and special. I have a child with some special needs, that may not be as sever as your sons, but I have learned to accept her for her abilities. This has come through time, patience and prayer.

Answer 9

you cant get over it, not if you have any feeling or emotion.
just stay strong for the child, and your child will grow to be strong

lots of special needs children grow up to lead fairly normal lives, just dont treat the child any differently than you would any other child, punish for bad behavior, and reward for good, and give your son lots of love

Answer 10

Learning to love people for what they are is tough. But your child is special in many ways not just his ability to learn. Be happy for those children who achieve goals...more to the point for those parents who are proud. Show your son you love him and his parents are proud. He ill face many obstacles in life...don't make one of them trying to live up to your expectations.