Skip to main content

April.

April felt a bit like a bulldozer to me. I'm actually kind of proud of myself for making it through April without screwing up anything important because there has just been SO much going on. Not that May is going to be any calmer, but aside from feeling bulldozed, I'm feeling pretty good about April. And I'm not sad that April is over either.

I didn't post much of anything in April because I was either too busy to sit down and do it, or I didn't have the emotional/mental energy to do it. I have vaguely mentioned a few things (school meetings, being reminded through friends' experiences that life in the medical world is fragile, the boy back on asthma meds, field trips, etc.) but I thought now would be a good time to expand. Not because anyone will be particularly interested but because I need to write crap down or I forget it.

This month has been a plague of seasonal allergies that, for some, turned into upper respiratory infections and asthma. I had to pick Cole up from school 3 times in April because of breathing issues, two of which also came with stomach symptoms. One of the days that I picked him up, there were 6 kids from his class that all went home that day with the same symptoms, so obviously there was something going around in their classroom. It grosses me out to think about it. Wash your friggin' hands, kids!! We were able to get a quick appointment with the allergist (meaning, we got an appointment in 1 week rather than in 1 month like usual) and found out that it was indeed asthma, and that it was worse than it has been since he was first diagnosed around the age of 3-4. The good news was that we got him on a daily inhaled steroid that has already made a difference, and we were able to get him a rescue inhaler to take on his field trip the next week. Of course then the day after the field trip, he used his inhaler at school and it made him feel dizzy and sick to his stomach, so I had to go pick him up again and bring him home early.


I had a meeting that kind of blindsided me in regards to getting Raya the support that I feel she needs in kindergarten. I've always felt like IEP meetings have gone well for us and have been grateful that we have not had the negative, hurtful experiences that many of our friends seem to have at most of their IEP meetings up to this point. It seems that we are now entering the phase where we will be fighting for everything; even the things that seem to be common sense stuff. I am so thankful for the resources that are available to help parents like me navigate the world of special education, and that there is so much helpful information available online.

I can only speak for myself, but when I became a parent, I never anticipated that I would need to one day become an expert on education law and the rights of children with medical and special needs. I know I'm not alone in that. The legal world is not where my interests lie, and reading & talking about it makes my head hurt but that's what I've been trying to do these past couple of weeks as I prepare for the next meeting. I do not feel qualified to be Raya's advocate considering that the other people involved all have degrees in education and do this sort of thing all the time. This meeting will be our most significant meeting yet, and I feel physically ill when I think about it. I have caught myself many times letting my imagination run away with me and working myself into a panic over something that has not even happened yet. I keep having to stop myself, take deep breaths, and remind myself to continue having faith that Raya will be watched over by a loving Father in Heaven who has always watched over her in situations like this.

I have tried really hard to keep my mind off of what could happen at the next meeting, and subsequently what the results could be for Raya in kindergarten. My stress has been compounded by the behavioral changes I've seen in Raya for about the last 2 weeks, that her teacher of course never sees at school. I love her teacher dearly and I'm so grateful for her and for everything she has done for Raya, but it frustrates me to no end that the problem behaviors seem to happen everywhere but school. The scary part of that is that her teacher and I each had to fill out similar questionnaires as part of Raya's re-evaluation to determine if she will be eligible for an IEP in kindergarten under the categories she qualified in previously. Many of the problem behaviors that I'm sure my questionnaires identified will likely not be reflected in the evaluations the teacher filled out because Raya does not do some of those things at school. She is really good at holding herself together at school but there are many days that she holds herself together until she walks out the door of the classroom and then she just runs out of energy for staying composed and she falls apart on me. I hope the scoring system they use will take into consideration that she is only with the teacher for 9 hours a week but she's with me for the other 159 hours. Her teacher never has to make her do things she doesn't want to do, like get dressed, get connected to her feeding pump, get ready to leave the house on time, eat, help with household chores, stop mauling her baby sister, etc. I'm not saying any of this as a negative towards her teacher, it just frustrates me that Raya acts differently outside of school so the school personnel don't see & understand the whole picture when it comes to her challenges and needs. I don't think that what they currently see in her 3 x 3 hour school days is an accurate predictor of how she will handle kindergarten. Maybe that's pessimistic of me but I think it's more realistic than pessimistic. She may pleasantly surprise me and I'm not saying any of this as an insult to her, I just like to think that I know her well enough to have a pretty good idea of how she will deal with different situations and environments.

This school stuff has occupied my mind most of the day and night for the past 3 weeks. It's all I can think about when I lay down to go to sleep at night unless I just let myself fall asleep on the couch in front of the TV. I know that's not a healthy habit but neither is getting in bed and laying awake for hours stressing about kindergarten. I get a little more sleep when I fall asleep on the couch. I am in a vicious cycle of mommy/wife guilt because I feel like no matter what I try to accomplish, I never finish anything that I start. I am too easily distracted to ever finish things. If I don't get interrupted by someone or something else, I end up interrupting myself because I'm so used to getting interrupted. I miss the way my brain used to function when I was getting adequate sleep every night and did not feel like I was being pulled in 50 different directions. That's not to say that I am not happy with my life because I definitely am, I just can't even remember what it felt like to have my brain firing on all cylinders and I miss that feeling of being in control and on top of things.

I have let a lot of things go this month. (like my kitchen...) One of the most liberating lessons I've ever learned was that I don't have to feel obligated to do everything. There are a lot of things I like to do, but when you get to the point that even doing things you like to do stresses you out, it's totally okay to let those things go too. I am not the world's most social person, but I do like to get out of my house every now and then and socialize with friends. I used to do a lot of scrapbooking and sewing projects, but at this point in my life, thinking about doing those things just makes me tired so I have given myself permission to just not do them right now. Earlier this month, I was having one of the BUSIEST days I've had in a long time. We went to therapy as usual, but during Raya's therapy appointments, I had to go sit in the car and get on a conference call with a feeding supply company, fill out school questionnaires, and pump a bottle so that I'd have something to feed Piper while Raya was having school testing done after her 2 hours of therapy. While I was in the middle of all of that, I got a text from a friend saying that they needed a sub for their Bunco group that night and asking if I wanted to join them. I laughed out loud. I appreciated the invitation so much, but the thought of having to go somewhere that evening and interact with people was just more than I could handle so I politely declined.
Friday morning I was supposed to meet some of my special needs mama friends for brunch at 9:45. I came home from dropping Raya off at school and put Piper in bed for a quick nap and pumped a bottle for her. She did not go to sleep so I figured we'd go ahead and go to brunch. Then I got a phone call from the school district's occupational therapist who had done an evaluation on Raya last week. She said she was not going to make it to the upcoming meeting and wanted to go over results with me. Based on the evaluation she did, Raya does not qualify for OT at school, which I knew would be the outcome because it's mostly based on fine motor and she doesn't have fine motor delays anymore. Then she told me that the teacher's sensory evaluation and my sensory evaluation were very different but that she understood that kids act different at home than they do at school, and that she could not give me the scores of those evaluations before the meeting. After I got off the phone with her, I didn't feel like going anywhere. I really didn't care about the results of her evaluation because I knew that's what the outcome would be, but having her tell me that there was a big difference in what I reported and what the teacher reported pretty much confirmed one of the big fears I have going into the next meeting. I had just about talked myself into going anyway because I knew my special mamas would understand and be supportive, but while I had been on the phone with her, Piper had fallen asleep. I didn't want to wake the beast so I didn't go. Another night, there was a church activity and Donny was gone that evening, so I was going to go and leave Ashtyn in charge. Then something happened (kids not behaving or something like that) and I decided I couldn't leave so I missed it.

I don't feel bad about letting those things go though. I feel bad about how messy the cluttered parts of my house look right now, and about how much time the kids have spent watching tv while I've scrambled to meet deadlines on other things. I feel bad about how many times they've had chicken nuggets or burritos for dinner in the last month. I feel bad that I haven't kept up with laundry or cleaning or vacuuming (except when I vacuumed the kids' rooms last week and the vacuum sucked up a loose strand of carpet in the doorway and put a 5 inch run in the carpet, which I also feel bad about) and I feel bad that I have probably come off as anti-social because I just don't have it in me to do anything but be at home.

Comments

  1. How frustrating! Just wanted to say you're a super mom to me, one of my role models! My little tubie is only 20m so who knows what we have in store, but I hope I can handle it with as much grace as you do.

    ReplyDelete

Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …