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Monday, April 20, 2015

Juggling cats

I feel like I'm juggling cats right now. Well, I suppose I can't really say that because I've never actually juggled cats so I don't know for SURE that this is what it feels like, but ugh, it's got to be close to it. So much to do, and so little time to do it all! I've hit my end-of-the-school-year wall about 3 weeks early this year and we are officially to the drag our butts across the finish line phase. Throw in the most awful allergy season in the entire 13.5 years I've lived in this state and a few germs and we're just a hot mess around here. I have a bunch of projects with deadlines all of a sudden and our poor respite provider keeps getting sick and having to cancel, which makes it hard for me to do anything during the day when Raya is home. The school health aide at my big kids' school has had me on speed dial lately for one reason or another. After picking one kid up early from school and then a trip to the allergy & asthma doctor today, it turns out that my dear boy, who had been officially discharged as an asthma patient last June, has not outgrown his asthma after all. He scored a whopping 57% on his lung function test and we left with 3 new prescriptions and a signed asthma action plan to have on file at school, just in time for his field trip on Wednesday to an outdoor location 2 hours away. (really, I am grateful that we got it in time for the field trip, just bummed that it's gotten this bad) On the bright side, it sounds like he will qualify for an asthma study and that would cover his medications, so yay for that.

I know this sounds like complaining but really it's just my way of saying, Wow, there is a lot going on right now. Being a mom is my "job" and it's the only job I ever really wanted. I am really grateful that I am able to do all of this and be there for my kids.

Thursday, April 16, 2015

It shouldn't be this hard.


I had a meeting yesterday. It was not an IEP meeting, but rather a meeting to discuss the re-evaluation we will be doing to determine whether or not she will continue to qualify for an IEP going into kindergarten. What I did not know was that we would also be discussing concerns and needs for kindergarten, nor did I expect to hear the phrase "We don't have the staff for that" as many times as I did. I expected to have mountains to climb but was not expecting to be confronted with them yesterday and was not really prepared for those discussions. Now that I know the areas that I will meet resistance on, I can at least start preparing my case and finding out what rights & protections we have for those things. I'm telling myself that's a good thing. I am also hoping and praying that it will not be as difficult as I am now afraid it's going to be to get what she needs (and we are not asking for anything unreasonable), and my prayers will be more specific now that I know what we're up against.

I know I'm being vague but it would not be in anyone's best interest to discuss details, especially when we are in the very beginning of the process. Here's what I will say though. It should not be this difficult or stressful to send a 5 year old child to kindergarten and know that they will be safe and adequately and appropriately cared for at school. I should not have a gnawing pain in the pit of my stomach when I so much as think about the concerns we have for keeping Raya healthy and safe in school, and I should not have to feel like the burden of proving not only what her needs are but how significantly they may impact her education is upon me. I could go on, but for now I'm going to stop and work on getting my ducks in a row before the reevaluation testing next week.

Friday, April 10, 2015

Living in the Woods



Parenting is hard. There is so much to worry about. Throw in complex medical conditions, and what is considered "hard" about parenting changes. The things that are at the forefront of the mind are very different for parents of medically complex children. The stresses of parenting a child without medical conditions certainly exist, and they are real and valid. For parents dealing with medically complex children, those typical worries still exist but they have to take a back burner to more basic, primal needs that keep the child alive.

The term "medically complex" is a vague, umbrella term used to describe a wide range of medical conditions that present unique challenges and require special care on an ongoing basis. There are no official parameters regarding what conditions are considered to fall under the umbrella of medically complex, but chances are that if a child requires ongoing care with a herd of doctors and therapists, he or she is medically complex. Many medically complex children have diagnoses of genetic conditions, diseases of major organs, and neurological disorders, and many have a collection of symptoms with no diagnosis.

Parenting a medically complex child means not only providing the usual care and nurturing, but also becoming an expert on whatever medical conditions affect the child. It means learning how to operate medical equipment, perform medical procedures, use the various tubes and devices attached to the child, and acquire an entire vocabulary of medical terminology. It also means preparing for any of the potential emergency situations that could arise and knowing that danger of these emergencies happening always lurks in life's shadows.

Parenting a child with any type of special needs changes the way the mind works. The blinders come off and nothing can ever be looked at the same way. Acknowledging the darker side of life does not make parents of medically complex kids pessimists, it just means they are doing their best to cope with the often ugly and terrifying realities that accompany their children's medical conditions. From an outsider's perspective, it can be difficult to understand that no matter how good a medically complex child looks, he or she may not ever really be "out of the woods," so to speak. Medications can keep symptoms at bay and special diets can help control the damaging effects of disease. Feeding tubes can ensure adequate nutrition and aid in overall health. Insulin pumps can keep blood sugars stable. Congenital conditions can be repaired surgically. All of the medical interventions that parents of medically complex children learn to administer can keep their children in a state of optimal health for their conditions, but all of that can change at any moment and wreak havoc on the most stable-looking medically complex child. In the blink of an eye, things can go from calm to complete disaster.

This is why we are stressed out and we can't ever completely relax. This is why we may find it hard to listen to people talk about the more typical concerns of parenting, and why we sometimes seem flaky or uninterested. This is why, no matter how good things are going, we have a hard time not living like we're waiting for the other shoe to drop. Even when everything appears to be safe, we never feel like we are out of the proverbial woods because mentally, we can't ever really leave the woods. It's all we've known since our medically complex children entered our lives and we can't erase the memories we've made there. We see terrifying and devastating things happen to the friends we've met while living in the woods, and we understand that those things could happen to us too. Next time, it could be us. If we seem a little overbearing, overprotective, or paranoid, know that it is for a good reason. Just as any parent dedicates his or her life to caring for his or her children, we have dedicated our lives to caring for our children but what that requires of us is very different. Living in the woods is not what we planned for our children and certainly not what we wanted for them. Since it is beyond our power to change that, all we can do is do our best to enjoy the scenery, keep living, and create a safe and happy life for them, even if it is "in the woods."


This post was featured on The Mighty

Thursday, April 2, 2015

Autism Awareness Day: Some thoughts on acceptance

I need to preface this by saying that Raya does not have autism, and that my purpose is not to somehow cheapen or lessen the struggles that families of children with autism go through. Even though autism is not on Raya's diagnosis list, she does struggle with many of the issues that children with autism struggle with. Since today is about awareness and acceptance, I wanted to share some thoughts and feelings that I have had recently about acceptance of children with special needs of any kind.



A few weeks ago, one of the kids had a friend over to play after school. Something small but significant happened that day. It hurt my heart and I have been trying since then to sort out my feelings and put them into words, but I haven't been able to. Last week, another small but significant thing happened that put my world back into balance, and I think that today is the perfect day to talk about both experiences.

Our kids are blessed with great friends who live within walking distance of our house, so during the months of the year when the weather is pleasant, there is a constant flow of children in and out of our front door. This is a common occurrence at our house, and I love it. On this particular day, the kids had gotten out of school early and the weather was gorgeous, so it was a perfect day for playing with friends. The little girl that came over is as sweet and adorable as can be. She is always polite and well-mannered at our house and I enjoy having her here. While the kids were playing, I was in my office editing pictures from a photo session I had done that week. Since the office is next to the front door, I could hear everything the kids were saying as they went in and out. As I sat adjusting the photos I had taken, I overheard this small exchange between my daughter and her friend:

daughter: Should we go in the back yard?
friend: No, let's go in the front yard. But not with Raya. I don't like Raya. Do you like her?
daughter: {pause} No. 
friend: She's so loud and she never leaves us alone.
daughter: Yeah.

Cue the breaking of my heart. Let me be clear that I am not sharing this to in any way shame my daughter or her friend. While I don't like that they had this conversation, I do remember what it was like to be their age and I understand that they are just acting their age. They had this conversation out of earshot of Raya, and they didn't actually say or do anything mean directly to her. 

I sat there dumbfounded for a minute or two, not really sure what to do. It happened quickly, and they were off to find their next adventure before I had a chance to do anything anyway. Hearing the little girl say that she didn't like Raya was the first moment that I realized people might actually feel that way about her. I think every mother has those moments where she is made painfully aware of the fact that not everyone sees her child with the same unconditionally loving eyes that she does. Goodness knows I was aware of that well before Raya was even born. In that moment, my blinders came off and I realized that this is just the beginning. This was just one friend of one sibling. What about when kindergarten starts in the fall? (well, technically the middle of the blazing hot summer on July 27th) What are the other kids going to think when she has to leave class 3 or 4 times a day to go to the nurse's office? What if somebody notices her pull-ups? What if, heaven forbid, she has a poop accident in her pull-up and the other kids smell it and make fun of her? What if she feels left out when the other kids eat each other's birthday treats and she can't? What if her dysmotility flares up and she throws up in her classroom in front of everybody?

All of those are valid concerns, but as I've pondered it, I realized that what concerned me most was not what the other kids think of her or even what they say to her. She has a pretty good track record of not caring what other kids think or say. {Remember the time someone at preschool mentioned being able to see her pull-up and she told him, "Well, if you don't like it then don't look at it!"} The reality is that yes, somebody is bound to say something that will hurt her feelings. That's normal. It stinks, but it's part of life. What I realized was bothering me more than what other kids might think was this:  
What if she starts to notice the ways she is different from her friends and it makes her feel bad about herself?

That's an inevitable part of life, right? I get that, but I was hoping we would have more time. And maybe we do. Maybe kindergarten won't be the year that somebody makes fun of her for still wearing pull-ups, but maybe it will. And maybe it won't bother her, but maybe it will. Maybe her classmates won't make fun of her if she has a #2 accident in her pull-up and they can smell it (and believe me, they will smell it), but maybe they will. Maybe her classmates won't notice that she has to have an aide sit with her during lunch to make sure she eats & drinks without choking on her food, but maybe it will. Maybe her classmates won't mind that she sometimes forgets about personal space, but maybe they will. Maybe they won't Maybe they won't care that her tube sometimes leaks smelly stomach fluid on her clothes, but maybe they will. Maybe kindergarten will be the year when she gains better control over her bowels and bladder and starts making it to the bathroom on time, but maybe it won't. Maybe it won't be the year that her teacher finds it easier to ignore her than work through her difficulties to reach her. Maybe this won't be the year that the parents of her classmates get upset that they can't bring treats with peanuts or tree nuts to class because of her. Or request to have their child moved to a different classroom where there is no nut allergy. Maybe the other parents won't complain in front of their kids about having to accommodate another child's inconvenient food allergies, but maybe they will, and maybe the kids will tell her what their parents said about her. Maybe none of those things will happen this year, and if they do, maybe they won't affect her. But maybe it will, and I don't know if I'm ready for that.

Last week, we had another experience with another neighborhood friend that helped turn things around for me and restore my hope that school will be a socially positive experience for Raya. This time it was my son's friend that comes over after school fairly often. This particular friend is probably the one that Raya gets the most excited about. Whenever he comes over, she can't contain herself. She hugs him, talks to him, and follows him around. She adores him, and as he has spent time at our house, I have come to adore him too. He is so kind to her and so patient with her. If she bothers him, he doesn't let on. He and Cole never complain about her tagging along with them when they play in the landscaped area in front of our house. He doesn't act like he's annoyed by his friend's pesky little sister, but rather seems to enjoy having her around. When he knocked on the door, Cole was in the middle of folding a load of laundry. I told him he could go play but that he had to finish folding and putting away the load of laundry first. I invited his friend to come in and wait for him to finish. Cole didn't want his friend to be bored so he let him sit on the couch and play on his Kindle Fire until he was done with the laundry.

It was no surprise to me that when she heard someone say his name, she came running to see where he was. She climbed up on the couch next to him and watched over his shoulder as he played games on the Kindle. I cringed a little when she completely invaded his personal space by snuggling up next to him and putting her head on his shoulder so that the side of her head was touching the side of his head. Bless his heart, he didn't say a word. He didn't move away from her. He just sat there and let her snuggle up to him, almost like he didn't even notice. Since it didn't seem to be bothering him, I didn't say anything. About 5 minutes later, I was in the next room and overheard him politely say, "Raya, can you move a little bit please? Your head is sweaty and it's making mine sweaty." She giggled and moved, and that was the end of it.

I just wanted to hug the kid. While I love Raya dearly the way she is, I also acknowledge that she can be really intense and kind of a lot to handle, and I don't think this little boy will ever know how much it means to me to see him being so nice to her all the time. That got me thinking about all of the other friends in our lives who have been so loving and accepting of Raya and her differences. The older kids who think her backpack is cute, and the kids in her class at school who are jealous that she can "eat through a straw in her stomach" instead of having to eat food. The kids who aren't grossed out when the tube accidentally gets pulled out at the park and watch in fascination as we put it back in. They don't try to ditch her when they're playing because they think she's too loud or weird or annoying. They play with her because they like to play with her, not because they pity her. They are the ones that look at her and just see their friend Raya. They accept her as she is and build their friendships around the ways that their unique personalities intertwine. I hope that kindergarten will be a year filled with those kinds of experiences.

As one of the most influential adults in her life, I have come to understand that my responsibility to her is to use the tools I've been given to help her overcome the challenges she has to the best of her ability and then to accept her for who she is, not try to change her into who I want her to be, no matter how good the intentions. I hope that all of the influential adults in her life will come to understand this. As she moves forward into kindergarten, my deepest hope and prayer for her aside from her safety while she is at school is for her to be accepted by her peers and by the adults in her life, and loved for who she is.

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