Being Her Mom (Day 7)

It’s been a long day. Not sure if that will be a good thing for this post or a bad thing…Here is the final post though celebrating DS Awareness week!

I love being a mom. It is one of the most rewarding, beautiful roles I could imagine. My kids bring me more joy than I could have hoped for. I always knew I would be a mom but I didn’t think I would be so fulfilled in it alone. My children are truly gifts that shine. Being a mom is also one of the most difficult jobs I can imagine. I am exhausted most days. I can’t keep up. I frequently have to choose between being a good mom or being a good house keeper. Not a fair choice in my opinion.

I think I do parent my girls slightly different while remaining consistent to our parenting style. I’m not sure if this is normal with having more than one kid or if this is just something that I’m doing with respect to their different needs and personalities. I do think each child needs something different from a parent. Thinking about the difference between my own sisters and I, we each wanted different things from my mom. I always wanted more talking while another sister wanted more physical contact like hugs. While trying to meet each of our different needs, my mom’s general parenting style remained the same for all four of us.

For Sofie, I do alter my parenting a bit more than I think other parents might for a second typical child. I’m not so quick to answer the question “What’s it like to be a mom to a child with Down syndrome?” as my husband is. He would say it is exactly the same as parenting a child with out Down syndrome. I don’t think I fully agree, although I want to. Maybe that’s because I’m with her so much more and am constantly juggling all her therapy, doctor appointments, behaviors and extra-curriculars. I also don’t think Dads feel the same judgement’s from other dads that Moms get from other moms. Let’s face it… Moms can be judgmental bitches to each other. Parenting sometimes seems like a competition or something.

I do struggle with what other parents think sometimes. I know… not typical of me, right? I worry that they don’t understand what Sofie’s needs are and why it may seem like I let her get away with some things more than others. I worry about Livi thinking this too. I don’t want Livi to resent her sister for “getting away” with more than she does. It is a hard line to walk.

With Sofie I have to parent her differently. She is not a typical 4 year old. It would be ludicrous to treat her like one. Developmentally she is about 1. She has behavioral issues that stem from her institutionalization, not her Down syndrome. These behaviors CAN NOT be helped with typical discipline tactics or even talked out like I was able to do with Livi from a very early age. This is my biggest struggle. I am mad at what the orphanage did to her and get frustrated with the behaviors that exhibit. I wish everyone knew that her behaviors had more to do with the abuse she endured and not because of her Down syndrome. I guess I feel defensive maybe? I want to make sure people don’t judge the Down syndrome?

For the most part being her mom isn’t all that different from being Livi’s mom. The differences come in when I need to be more relaxed about negative behavior than I was with Livi for the sake of her attachment (not if that behavior is hurting some one though) or where I need to be much more consistent and on top of things if I want something to sink in. It does take her longer to process things. She also likes me to be holding her for quality time but not face to face. Where Livi likes to know I’m watching her and engaging with her fully.

Sofie is a pretty great kid to parent. Both my kids are. They each have their own quirks and secrets but I think I’m figuring it out. Sofie takes some extra consideration sometimes and I do have my struggles but they are just different struggles. Not more difficult, just different from the norm. Sofie having Down syndrome really isn’t what makes my being her mom different. Yes, I will be in certain parenting stages longer with her but the major differences come from her being an orphan. I know we will one day get past that and she will heal fully. I feel so blessed to be her mother and get to support her through that process but some days, like today, with the tantrums, flailing, crying and snot, are hard.

Inclusion (Day 6)

True inclusion is an attitude, a life style. It doesn’t just include people with Down syndrome or different abilities. It includes respect for all types of people, all ages, all abilities, all different points of view, all religions, all sexual orientations, all parenting styles, etc. It is a hard thing to achieve but so worth striving for.

Not sure where exactly this came from but the Principles of Inclusion are:
– that EACH person belongs
– that EACH person can learn
– that EACH person has the right to dignity

For the most part I think we do an okay job at including people in the community, at least from an integrated point of view. Sure there are the few asses we come across every once in a while with archaic views about other peoples right to practice their religion or people with special needs out in public, but I think they are few and far between. There is wheel chair access most places and you will usually come across numerous people willing to help out where needed. You will also come across many starers or avoiders when it comes to people with special needs… I usually stare right back and try to make them uncomfortable 🙂

The problem with people practicing true community inclusion is the lack of peer relationships between neuro-typical people and those with developmental disabilities. Sure, people with disabilities get out in the community but not usually without family or a support worker. People with developmental disabilities frequently are only friends with other people with disabilities or their staff. I would like to see more friends out in the community with people with different abilities. I hope that my girls have good relationships with all types of people and I hope I can set a good example for this.

Inclusion in schools is a tricky one sometimes. Sure there is integration but there is still the learning assistance room where a lot of kids are ostracized too. Kids who go there usually have a diagnosis of some kind and their peers know this and label them for it. Sometimes families or schools have certain expectations or a lack of expectations that don’t fit with the child, the school, or the family for some reason. This is a difficult conversation to have at times.

I was an EA in a high school for a little bit and worked with one student with DS whose parents wanted him fully included in every minute of the class and didn’t want much adapted for him either. I don’t disagree with this strategy completely but I do think there were things the parents didn’t consider. This child was years behind academically and at the high school level he was very bored during certain subjects. Because of the boredom he was disruptive. This outcome wasn’t fair to the child who wanted to learn or the other students in the class.

I haven’t had to tackle the school system as a parent yet, that’s next year. I’m sure I will gain new perspective and ideas as I grow in to that role. I think inclusion in the school system takes open minded teachers, EA’s, principals and parents who work together to come up with the best strategies for the child to succeed. All children can learn, they just may need a little extra assistance. That assistance will look different for each individual child so it is unfair to paint them all with the same brush and expect them to all succeed in a fully integrated classroom or ostracized in a learning assistance room.

The hardest point of inclusion that I have found most difficult for people to truly get is the dignity aspect of it. Dignity needs to be considered in many different areas for people with DS and different abilities. Dignity in their privacy, their rights, their choices, their successes. Frequently, their lives are decided for them to a certain extent, because of the extra support they may need they are on someone else’s schedule and way of doing things. Their choices are limited because of how society views them. I have frequently been out with an individual who is taking the lead, making choices about their finances or even just their food, and the person they are talking too looks back to me for confirmation that the individuals choice was okay.

One of the biggest frustrations I have is the lack of an individuals dignity to succeed or fail. As a support worker or family member it is our job to make sure they don’t fail… right? WRONG! Everyone fails! It is part of life. It is part of being human. We try things and sometimes we succeed and sometimes we fail.

I remember working for an agency as a support worker and taking an individual who was obsessed with food to the pet store in the mall. It was a spur of the moment decision for us, although I did know that we weren’t supposed to take her to places where there might be food. (I didn’t agree with a lot of the practices of this agency and toed the line frequently!) We had a great time at the pet store and she loved seeing the kittens. The outing was a huge success. Yes, it could have failed. She could have noticed the smell of cinnamon buns coming down the hall way and chosen to demand one, possibly even causing a scene, but she didn’t. When I got back and my manager found out, I was reprimanded for the possibility of it being a failure. WTF?!

Maggy, my sister with DS, has had many successes and failures with us. Her weight is a struggle but she keeps it in check. One of her most controversial successes was getting a tattoo. A few people didn’t agree with us “allowing” her to get one. We all have numerous tattoos in our family so it was no wonder that she wanted one too. We knew she may not completely understand how painful it is but figured if she ended up with only half a tattoo because she didn’t want to endure the pain anymore, then so be it! She was hard core though and has been talking about another one on her shoulder! You can read all about her success HERE!

Here is another little saying that has been grilled in to me over the years that I can’t remember where it is from…
The role of a support worker:
-if a task can be taught… Teach it.
-if it can’t be taught… Adapt it.
-if you can’t adapt it… Support it.

I actually kind of love that one.

Like I said, true inclusion is hard and takes a certain frame of mind. I just hope that as my daughters grow up they will be able to lead by example and experience this in a powerful way. I’m sure I have a lot to learn myself. I’m excited to see what they teach me and how they, along with their friends, will help to change the current attitudes in our society. 

A Father’s Perspective on DS (Day 5)

I promised Katie that I would write one blog entry for Down Syndrome Awareness week, so here it goes.

My journey towards living and working with people with developmental disabilities started after high school. Looking back now at that fact is a little strange. After all, I was a part of the inclusive generation. I can remember kids in my classes who had disabilities all through school, but for some reason it never clicked with me. De-segregation had happened, and kids with disabilities were a part of the classroom and not simply observed through the glass of the Learning Assistance room. I was never really friends with anyone with a disability in school, but I don’t remember shunning them or doing my best to avoid them. They were simply there alongside the rest of us – albeit usually with an aide or other adult with them. Of course, simply recognizing the existence of people who deal with disabilities is not a form of inclusion in itself. At best, it was a cold sort of recognition of the larger societal context. People with disabilities were there, but they had no impact on my life.

There was one exception to that rule, and that was Brent. Brent was a tiny little kid with Down Syndrome, who had been adopted by a family in our church. Brent was a chatty little guy, who would jabber at you non-stop with such speed and ferocity that it took a pretty keen ear to recognize what he was trying to tell you. He would run around after the service, arms and legs flailing like he was about to fall over at any second – but he rarely did. His chest was covered in scars from repeated surgeries to correct his heart, beginning when he was only days old. But his smile usually stretched from ear to ear, and his happiness was infectious. For reasons that I won’t go into here, I tended to keep my school life and my church life very separate, and so my appreciation for my little buddy Brent didn’t bleed over into any sort of generalized awareness of disabilities.

It was after high school that Brent’s dad, John, asked if I wanted to come and help at a camp for adults with disabilities. I had been laid off from my job at the local bookstore, and was looking to keep myself busy with something, so I said yes. I remember regretting my answer almost immediately, and trying to think of a way to back out without coming across as an ass. I hoped that some kind of opportunity would come my way that would be impossible to refuse, so I could avoid an experience which I was sure would be a disaster. Obviously, that opportunity never came. I went off to a week of training camp and did a crash course in caring for people with disabilities. John had alluded to the kinds of things I would have to face, but that first week made me even more nervous than I was. The thought of doing personal care for another person was revolting. The idea that I would be presented with every part of the spectrum of developmental disability was nerve-wracking.

The first week was a disaster. I was in an integrated camp, where there were two campers with (diagnosed) disabilities, and the rest were inner-city kids. I was responsible for one kid, Nathan, who had a diagnoses of Autism and ADHD. The rest of the counselors and volunteers trundled off to different camps, and I was largely on my own. It was hell. Nathan was physically aggressive towards both me and the other campers. He tried to break windows and doors, he almost broke my glasses, and I couldn’t figure out any rhyme or reason to it. I had very little understanding of how to deal with complex behaviour – I was just a kid trying to do his best. I could see very clearly that even Nathan didn’t understand what was happening to him in those moments.

Nathan was sent home halfway through the week. I seriously thought about going home myself. But for some reason I didn’t.

The rest of the summer was a marathon. We were short staffed almost every week, which meant that I had very little down time (which as anyone who knows me will attest to how important it is for me to find time by myself). I was introduced to wheelchairs and mobility aids, g-tubes, more behavioural challenges, augmentative communication systems, and people with all sorts of varied complexities. I learned to change a diaper on a sixteen year old teenager (which, incidentally is far more difficult task than changing an infant). I had sleepless nights. I cried. I cursed. I worked 18, sometimes 20 hour days trying desperately to meet the needs of a different set of people each week.

And I changed.

I began to realize that the people I so self-righteously thought I was helping really had the world figured pretty well. They knew the importance of friendship, the joy of helping out, the reward of working (we were never short of volunteers to help in any way, including mopping the dinner hall after meals). The people I was there to support were far more in touch with their humanity than I was. I remember watching two ladies stage a feud that had most of the camp worked up into a frenzy, and then release all that tension in a moment of tears when they apologized to each other in the dinner hall, and embraced as friends once again. I saw every human emotion present in those adults, from anger to love, from anxiety to hope, from fear to trust.

That fact should not be as surprising as most of us find it to be. Because when you get down past the prejudice and the sneering intellectualism of our society, the truth is that regardless of IQ score people with disabilities are still people. They have the ability and the right to experience everything that the rest of us experience (and everything that we take for granted). They can work, they can love, they can fight, and do everything else that we expect of those of us who appear to be neurotypical.Whether despite their disability or because of it, there is a resiliency that demands our respect and admiration.

I wrote this post as an explanation to a question. The question was, “What is it like to be the father of a girl with Down Syndrome?” My answer was immediate and instinctive.

“The same as it is to be a father to a girl without it.”

Sofie has challenges  – but the vast majority of her challenges do not exist simply because she has Down Syndrome. Her challenges are related to coming out of an orphanage, missing those key years of development that all children experience. And in some ways, her challenges are no more and no less than than Livi’s, whose emotions and obsession with detail often get the better of her. Sofie’s challenges may not be any more substantial than those my parents had to deal with, in an arrogant and often angry son, who believed that he was too smart for school and nearly wound up paying the price for it.

My interactions with Sofie are not really any different than my interactions with Livi. We play, we sing, we deal with the tantrums and over-attachment. But when I look at Sofie, I don’t see a life of challenges – I see a life of opportunities, opportunities that she would not have had in Bulgaria because they believed that her disability was really an inability. I see a life where she has the same opportunities afforded to any of the rest of us.

Because we’re all human. And we all deserve to be treated like one.