I just spent the weekend with my parents, my sis and her two boys. My oldest nephew is four and he has autism. He is wonderful little boy and I love him to death but I truly don't know how my sister does it everyday. The boy has no sense of fear or pain. He climbs, runs away(if he gets a chance)and likes to break glass things. You constantly have to keep him busy and be on your toes or you will be in trouble. We took him swimming last night at the hotel with my youngest nephew and my two dk's. There were five adults and it was an expierence. He scared me to death and made me a nervous wreck. He would not keep the floats on and really did not want to get in the pool. But he would sit on the edge and lean way over. He came down to the deep end a couple of times when I was down there and I was just sure he was going to fall in. I am certain I would not have been able to save us because he panics in the water. Needless to say we did not stay long. My sister made the comment see what I deal with everyday. She by no means meant anything bad by it. But boy it makes you really think what she does have to do everyday when you get a small taste of it. Unfortuately, my sister just went through a bad divorce and there father is not in the picture. So she only has my parents to help. I don't know why I even posted this but I just have been thinking a lot about whay my sister and parents go through everyday. I love my nephew and I know they do to. But it can be so exhausting. To all your mom's with children with disabilities Hang in there.

By Tink on Sunday, August 21, 2005 - 06:05 pm:

I know that the disability seems like such burden to other parents sometimes. I often hear "I don't know how you do it somedays" if my ds is having an off day but I parent just like anyone else! If he is having a bad day, just like any other kid, he spends more time in time-out than most days and I try to find out what is causing it. Does he need more one-on-one time? Is he too tired from getting overstimulated during the massive errand run I went on?

We also appreciate the good things sooo much more! I remember each time I heard "I love you" from each kid but the fact that I heard it from my child that wasn't supposed to talk or be able to show emotion makes it a much more powerful memory. I was much more appreciative of my youngest dd's typical development because I knew that it wasn't something to take for granted. And, I'm a better parent since having to deal with his issues. I'm more structured, more consistent, more compassionate, and more FUN! Autism is a terrible disorder, I wouldn't wish it on anyone or their child, but you take the good with the bad and it all comes one day at a time.

The best way you can really help out any parent of a special needs child is to be understanding. Don't sigh or push past a child in a wheelchair. Don't judge a child melting down in the grocery store or acting up at the park. Don't stare when there is a child that is hard to understand. That is the kind of thing that hurts the most.

By Kaye on Sunday, August 21, 2005 - 06:35 pm:

The other thing that I think makes it is easier is, he didn't just show up like that one day. You start parenting as a baby and the difficulites aren't the same, as time goes on, you just don't realize what a pain he can be sometimes! We all get in our habits and routines and we find what works.

By Karen~moderator on Sunday, August 21, 2005 - 06:57 pm:

I experienced a similar feeling about my sister and my nephew. He is not autistic, but has a lot of different issues going on with learning disabilities, emotional problems, behavioral issues, etc. He actually has a lot of characteristics of a child with Aspergers. He is 14 but looks and acts around 9 or 10. When they spent a week with me last Christmas, I really got to know my nephew for the first time, and I realized what a challenge he is for my sister.

Don't get me wrong, she loves him and I love him. My heart ached for her one day when she told me *I never wanted to have kids, and when I decided to have one, this was the card I was dealt. I feel cheated because I will never know what it's like to have a normal child.*

I stopped in my tracks when she said that. We discussed this a lot on vacation this year. She now sees him as a blessing and I think she is (finally!) learning from him too. There is a reason she was given this child. I know he is difficult, and I can't imagine first-hand what it must be like living with him day in and day out. But she can't imagine what it was like for me to have two adolescents and 2 toddlers. I think we were each given what we were because that was what we were meant to have.

There's a shiny side and a dull side to every coin. No matter how perfect one's life, or child appears, there are happy and sad days. The child that so many people see as a burden brings untold joy to his or her parents in so many small ways. The child who appears to have it all together and have a perfect life can just as easily bring tragedy and heartache to his or her family. It's all in how you choose to see it, I suppose.

I've never raised an autistic child, or a child with severe learning and behavorial problems, but the limited exposure I've had makes me appreciate my kids so much more, and appreciate THOSE kids so much more as well. The bottom line is, all these kids are human, they are special, and they are loved by THEIR families and bring joy to THEIR families. We could all probably use this as a reminder to be tolerant, open minded, patient, and not to judge until we've walked in those shoes.

By Lauram on Sunday, August 21, 2005 - 09:06 pm:

Can you help her out every once in awhile? That might help to give her a much needed break. It is very tough. The truth of the matter is that we don't get to pick who our kids are. It can be very tough. THere are positive aspects as well. I look at my oldest son sometimes and think, "Wow. He's here with us. What a gift." (He almost died when he was born- instead he was dealt 5 possibly 6 diagnoses.) I know I go through a variety of emotions, sometimes on a daily basis. I love my son (and kids) to death- and would never want it any other way- but sometimes I just get beaten down by exhaustion. It's hard on the mom, the family and the marriage. I often wonder when things will get easier. It hasn't happened yet at he's 8 now! My youngest son is also showing some "signs" of trouble. I often say, I"m not sure I can do this again!" It's rough. I do wish I had more help- and was able to ask for more help. Our family can't handle them- nor could a babysitter, so we are left to manage on our own 24/7. We take them places- which is lucky- because they are better in public than at home. You do learn to appreciate the little things more. I was so proud of my son for getting first place in a swim meet (after years of training from lone tone issues.) I'm not sure if I agree with the good days/bad days comments. I think that trivializes the daily struggles. There are no good days. There are just days that are better than others. It's tough also when you don't feel like you can relate to other moms. Sometimes I hear moms complain about things that I think I would only be so lucky if that were my b iggest issue! It has also helped me to form a support group- so I feel like I'm helping others not feel so alone when they are going through all of this.....