Alternative Therapies for Special Needs: Personal Experiences

Alternative Therapies for Special Needs: Personal Experiences

I love Chloe exactly as she is, which is why I often struggle with the idea of trying to “fix” her. Obviously, though, anything – or almost anything – we can try and see if it helps her, we are and always have been willing to do. I say almost anything because of the possible risks associated with different alternative therapies and, unfortunately, what it usually comes down to is the cost. So if something appears to be not too risky and is something we can afford, and especially if I have seen or heard of something helping someone else, then we will most likely try it for Chloe. Here is an overview of what we have tried and a few that are on the radar to try if/when we can afford it. Each therapy type is linked to an external website providing additional information. Anat Baniel Method (ABM) : According to their website, ABM, “rather than try to force children into developmental milestones they are not ready to do successfully, which can groove in their limitations even deeper, [this] method wakes up the child’s brain to create new connections, often at a staggering rate, leading to spontaneous, often extraordinary breakthroughs in movement, thinking, self-regulation, and connection with others.” I had heard a lot about this method through different online support groups and it couldn’t be ignored that this therapy was working wonders for other special needs children. So, despite significant financial constraints at the time, we decided we at least needed Chloe to try it once. One half hour session later, I was  convinced this could be a game changer...
Wait and See

Wait and See

Because I am so open about Chloe’s conditions via blogging, Facebook, Instagram, at the store, at restaurants, you name it… many people reach out to me when they have a new diagnosis for their child, or no diagnosis for that matter. Friends of friends have been referred to me for questions and support on occasion. I’m glad to be of any help I can, though it’s very limited. One time in particular, I remember corresponding quite a bit with one mother whose experiences with her child reminded me a lot of our experiences of first learning about Chloe’s condition and all the frustrations we had during that process. This sweet mom kept asking me what to expect. “Will she do this? Will she do that? Will I be able to do this with her? What will people think? You don’t think she’ll need a wheelchair, do you?” I found myself giving the response that used to make me cringe. “You’ll just have to wait and see.” Ugh, I remember thinking that was such a cop-out answer from doctors. I thought for sure they knew and they just didn’t want to tell me the grim truth or were afraid to give me the hope I was seeking. But with a few years of wisdom (provided by Chloe) and motherly experience under my belt, I realize it’s the truth. You just don’t know. No mother really knows those things about each of their children, but especially those children with special needs. And so here I am seven years later echoing those words I used to dread yet heard so often. “Wait and see.” To which I...
Love the Patient

Love the Patient

This is a continuation of a small talk I gave at a nurses’s residency training last week. For part one, click here. After letting the nurses know that it was important to us for them to love the parents, I wanted talk about and share examples of is loving the patient. Oh sure, nurses know these things, even people who aren’t nurses can tell you that you are a better nurse if you care about the patients. But I mean really caring about them. And I will share an example of when I saw this in action. When Dylan was in patient for surgery on her spine we noticed that every time she was out of her bed and in our arms her nurse would come and mess with her bedding. She was always turning, fluffing and changing things. Frequently she would comment about the new cute blanket she found to put on her bed and she would make things all nice and neat before she left. After seeing her do all this fussing for a day or two I finally asked her about it. I told her no one messed with Dylan’s bed like she did and inquired as to what she was doing all these time. I was nice of course, just curious! She told me that everyone likes to turn their pillow over to the fresh side and everyone LOVES clean sheets! So this is something that she always does for her patients that can’t do it for themselves. My heart burst. At only 9 months old, this nurse was treating my baby like she was...
Tips for Overnight Tubie Feeding

Tips for Overnight Tubie Feeding

I was scrolling through a group on your friendly social media site and I saw what I think is a brilliant way to handle the tube with overnight feedings. A mother was asking how to keep her child safe with overnight feeds because she moved around a lot and mom was worried about the tube strangling her. One mother chimed in with a best practice, string the tube through a pool noodle! then just lay the noodle next to the child in bed. Awesome! Genius! So, starting with that tip, I put together some great tips for over night feeds. The pool noodle. It’s been reported electrical tubing works well as well and it is cheaper and lighter. You can purchase it at home improvement store. Also paper tubing from a paper towel roll. Feeding the bed is inevitable. There are inexpensive vinyl mattress covers (I have included an online link so you know what to look for but Walmart has them for half this cost!) as well as washable pads that will come in handle for quick clean up. Overnight diapers are a must to avoid a diaper change in the middle of the night. You can also use the disposable inserts used in cloth diapers into a regular diaper for added absorption. (Link is one option, but there are several) If you use footie jammies, use the largest button hole setting on a sewing matching to sew a little “reinforced out” for the tube to go through. We do this on the side of Dylan’s jammies. I don’t know how to sew, but I do know how to...
The Power of Social Media in Special Needs Parenting

The Power of Social Media in Special Needs Parenting

I get it. Some people hate FaceBook and hate all social media. How annoying that people can see so much into your life – how annoying that nosey people you hardly know can find information about you! I have heard people comment about FaceBook being so horrible that you would think that FaceBook did something to them… personally. This last Friday a friend commented “FaceBook will be the downfall of society.” The passion! I offer a different perspective, and one from a special needs parent. In the last couple of days alone I have seen: A parent with a new baby boy in the NICU – the new baby recently diagnosed with something she had never heard of and she was scared. Not only was she faced with having to educate herself on a diagnosis that there just isn’t a lot of information about (and most negative!) but she dreaded the day they discharged him because then she would be responsible for all of his care. Where does she start, it was a cry for help. A parent desperately looking for medical supplies that she needed to feed her child. The proper insurance approval hadn’t been received yet and she was seeking out any extras parents may have amassed. The request did not stand long before she received offers. This reminded me of the time when someone asked for spare 60 CC syringes and before I could respond that I had an extra BOX, 20 other people had chimed in that they were willing to help. A parent struggling with taking her child to church because her sweet special...