Prairie Wife of the Week April 4, 2014

Posted April 4, 2014 by Prairie Wife - 11 comments

TallGirlJ has been seen around the blog a few times as a guest contributor. We have been on many adventures and she is my go to girl for help with parenting issues. As I am sure you know April is Autism awareness month. While TallGirlJ does not have a family member who is autistic, her older brother is handicapped. I knew that I wanted to share her story this month to offer support to not only other men and women that have siblings who are handicapped but, to parents as well. Too often I have seen friends of mine worry about the effects of the necessary extra care of their handicapped child on their other children. Guilt about time in therapy, or days and even weeks, spent in the hospital with illness and surgeries. TallGirlJ answered some pretty hard questions very honestly about what it was like as a child and now a mother, having a sibling who is handicapped. Her love and loyalty to her family, her determination to help her brother succeed in his life, and her grit and grace in teaching her children that no family is the same, make her the perfect Prairie Wife of the Week.

Prairie Wife (PW): First tell us a little bit about your family.

TallGirlJ (TGJ): I am a mom of two: a 5 yr old girl and 2 yr old boy. I am on my 7^th year of marriage to a wonderful husband and daddy. I have some great role models in marriage in my parents who will be married 40 years this fall. I also have one older brother, we are 7 years apart. I grew up in the small town of Glenrock, Wyoming. To be honest I always thought I would leave, I did for a bit, but couldn’t stay away! I am now raising my little family here. I am a stay at home mom but, I do office work part time for my parents’ company. I enjoy riding our horses, caring for all our animals, tractor pulls and horse clubs. It’s a busy life, but a great life.

PW: You older brother is handicapped, but he wasn’t born that way. Can you share his story with us?

TGJ: My brother was born in the 70’s when all the vaccinations we have now were not available. Michael was born a healthy “normal” little boy, when he was 9 months old he became ill and the doctors treated him for what seemed to be an ear infection. My parents felt there was something more but, by the time they got him to a new doctor he was very sick. It turns out he had Cerebral Meningitis. By the time they received the correct diagnosis things were bad, he ended up in a coma, had multiple seizures, and a stroke. He is very blessed to be here with us today. The left side of his brain was permanently damaged from the meningitis, and this is what caused his handicaps.

PW: There are 7 years between you and your brother, was it planned?

TGJ: Michael was a very high needs child, between Grand Mal seizures, a severe lack of communication skills, and being very active and hyper my parent’s hands were pretty full! Not to mention my dad worked many hours leaving most of the caretaking responsibilities to my mom. I think that having another child just seemed out of the question. I am not sure if they ever talked about more kids, or if it just seemed like the obvious answer would be no. It seems God didn’t agree, as my mom got pregnant, surprise!

It’s a funny joke now but, my when my mom found out she was pregnant she didn’t tell my Dad for quite some time. Her reasoning was “It never came up!” Of course why would it lol?

PW: How did your birth impact your brother?

TGJ: When I was born my brother was still struggling with communication and what we would consider simple skills. He loved being a big brother so much, that they had to tie a net over my crib so that he couldn’t get to me. On more than one occasion he had gone to my room to drag me out of the crib and pull me around by one arm while I slept! As I grew and began doing things, so did he. He developed right along with me. The biggest thing was when I started talking his verbal skills started to improve a ton too!

PW: Did you even know anything was different about your family when you were younger?

TGJ: This question really made me think. And, the more I thought about it, the more I realized I must not have known it was different. I did realize that my brother wasn’t the typical big brother. In fact I always felt like I was more of a big sister (being bossy came easy), even with him being 7 years older and a lot bigger. I just knew that I was the one who had to protect him. It seemed right and totally “normal” in fact he was often just like an annoying little brother. I would have friends over and they would want to laugh and play with him!

PW: Can you share some stories about things you remember from when you were younger?

TGJ: My brother is quiet a character, and is very smart in many ways. For example, he doesn’t forget a thing! I can remember him always getting himself in mischief by trying to build or take something apart. You never want to mention in front of him that something needs fixed because he will make sure it gets done (whether it’s done how you want it or not) or he’ll bug you until you do it.

I can remember when he was in middle school and sat and watched a guy take a computer apart to fix it. The next day he took his school computer apart. The guy couldn’t believe how he did so correctly, and was able to put it back together!

Michael is also VERY VERY strong, almost unnaturally so. My friends and I would go hide in his room and he would pick us both up, one in each arm, and throw us out. So funny!

He is super funny too! My favorite story to this day happened on when my brother was in his early 20’s. We were playing with our cousin and he went downstairs and came up with a board type paddle that had little birds all over it. He then proceeded to tell our cousin he was going to “Crack a birdie on his butt!!”

PW: Were there any negative experiences you had to deal with because of your brother’s handicap?

TGJ: It’s nice to say that I don’t have a lot of experiences of people being mean. Of course there are those bad eggs out there that can’t be nice, but for the most part people are very accepting of Michael. In fact, he is very likeable and has always had more friends that I could ever imagine having! I can remember two experiences that will always stick with me.

The first is when I was about 8 and we were at a horse sale one Saturday, which was a very common thing for us. I was out playing with my friends when I thought I could hear my brother yelling/crying (which he never did). I went running to find a kid about 13 had knocked him over and was proceeding to ride him like a bucking bull. I knocked the kid off and gave him a right hook. At about that time my dad showed up to find out what was going on. The boy ran back to his dad and told him my dad had smacked him… Needless to say when the kids’ dad found out what really happened, thankfully his father then went on to teach that kid a valuable lesson.

The second incident was at a Church Camp. My brother always came to the same camp as me, even though he was older and should have gone to the older kid’s camp. Both my parents and the camp agreed that being with me was better. He of course had to stay in a cabin with boys and I with girls.  We had had a great week and it was time to go home. I went to find my brother only to find a kid ripping the arms off his treasured Pee-Wee Herman doll and throwing eggs at him. I retaliated by throwing eggs at the bully…and pushing him in a creek. It’s times like these I can remember wondering how kids could be so cruel. The good news is the kid was kicked out of camp for the next year… but so was I.

PW: Is there anything you wish people would or wouldn’t say when asking you about your brother or talking with him?

TGJ: I can’t really think of anything right off that would be offensive to me or my brother. I know that a lot of people are against the word retarded… Which I am too, and I would never use it. It repulses’ me to hear people say it to truly describe someone but, not because I feel like it insults my brother (he is not retarded), but just because it is a crude word.

I also know that my brother can come across as a little too interested in women sometimes. He looks like a “normal” 37 year old, but acts like a hormonal 17 year old boy. In fact, he is GIRL crazy!! So at times I will have to just find a way to introduce him to the person and mention that he loves to meet a pretty girl. After a few minutes talking to him they realize what is going on, and for the most part the women are very receptive and sweet. (He also Love Love Loves all of my pretty girlfriends)

PW: As you grew older and more independent, how did this impact your brother?

TGJ: Just like him talking when I talked, he tends to take cues from me. I am sure some of it is a little bit of sibling rivalry, which I believe is a healthy thing! When I moved out Michael decided it was time for him to go too.

He still talks about how he is going to get married, which I find hard to believe because he is quiet a dancing ladies man. I am not sure he can give up his flirtatious ways!

PW: Has having a brother who is handicapped influenced you as a mother?

TGJ: Knowing my brother got sick as baby, made me paranoid. At first I didn’t really notice I was paranoid or think about how I might be overreacting more that the average first time mom. Until one particular moment…it was the moment I was making my pediatrician measure my daughter’s ears to see if one was bigger than the other. As he kindly did what I asked, my doctor began asking me questions about why I so worried all the time. That’s when it clicked, and I blurted out my brother got meningitis at 9 months. My kids pediatrician doesn’t know but he was a great psychiatrist for me that day, and he never once made me feel silly or crazy (I am sure my kids’ charts state otherwise I know under mother it says CRAZY). That day a light bulb came on, and I realized I needed to be more aware of my fears and talk myself through them. I am proud to say it has been much smoother with my little boy, and I have never had his ear size measured!

PW: What is your relationship with your brother like now?

TGJ: My brother lives 30 miles away in a group home. He calls daily and persistently (it’s nothing to have 15 missed calls in a 30 min window) until you speak to him about his day.

He is probably one of the best and most fun uncles there is! Who else has and uncle that still believes in Santa, The Easter Bunny and all of that? And is just as excited about it as you are?!

I do of course worry about the trouble that him and my son are going to get into… I find myself often having to remind him that he is an adult and knows what a good decision/bad decision is!

It is one of the greatest things to see the fun and love that him and my kids share, and to see him introduce the kids to people he knows. He is one beaming proud uncle! As I mentioned before, he is a dancing fool (with everyone but my mom or I) and he will never turn down his beloved niece!

PW: What advice do you have for parents who have a mixture of children who have handicaps and “normal” children?

TGJ: I think people who have a mixture of special needs and “normal” (I always use air quotes when speaking of normal because seriously… what is normal?) children need to just know that there is nothing odd about their family. In fact if anything, their kids will learn more empathy and know that God makes all people different. I know my daughter learned this at a very young age and still says it. I have heard her tell people “You know, I am different. That is how God made me.” I know most parents try to ingrain this in their kids but, when a child is around it all the time they have a deeper understanding and it makes more sense!

I would say if you have a super high needs child and feel like you don’t show as much attention as you would like to your other children, just make sure you make time once a month or whatever fits your needs to spend alone time with each child. This is good practice whether you have 1 child or 15 even if they are all “normal”! Every child wants to feel like they matter to their parents, and giving them the gift of time rather than things is the best way to show them you care.

PW: What are your hopes and concerns for your brother’s future?

TGJ: My hopes are that he continues to learn and succeed (whatever his personal definition of success is), and that he stays the amazing carefree soul that we all love and cherish.

My concern would be that there won’t always be people around that love and care for my brother and his best interest. This is a responsibility that my family and I take on happily but, I know there are people and organizations that want to cut help for people like my brother because they are not “functioning” members of society. This is so sad. He would do anything to have a “normal” job and he is one heck of a worker. He has more heart and drive than a lot of people that haven’t had to fight the same battles as him…I could go on about this forever though.

PW: Any last Prairie Wife words of wisdom?

TGJ: I guess my wisdom would have to be, don’t be so quick to judge a person. I have met many amazing men and women who, like my brother, just want to be accepted. When you take the time to know them they are all very fascinating people who have a lot to offer. If you ever have a chance to volunteer at a Special Olympics, do it! You won’t regret the laughs and fun you have, and the positive impact Special Olympics has on the participants and their families, is beyond measure.

Make sure you stop by next week to read her interview with her mom!

As always our Prairie Wife of the week will be stopping by to answer any questions or comments.

Categories: Life As It Happens, Prairie Wife of the Week

Tags: , autism awareness, family, handicapped siblings, interview, support