Monthly Archives: January 2013

Oral motor what?

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We have recently learned that Maddy has oral motor issues. Oral motor issues – what the heck is that?

Oral motor skills refer to the movement of muscles of the face (e.g. lips and jaw) and oral area (e.g. tongue and soft palate), especially the movements related to speech. I stole that definition from here. Kids with SPD can have motor skill and body awareness difficulties, including oral motor issues. It has been estimated that 31% of children with SPD have problems with feeding.

Basically, a child with oral motor issues has trouble controlling the movement of her lips, tongue, and jaw muscles. As you can imagine, this can make learning to eat and talk a much more difficult task. It is suspected that it is caused by a neurological glitch – in other words, the brain knows what it wants the mouth to do, but the right signals don’t get to the mouth (and thus, the mouth never completes what the brain wants it to do).

We have known since Maddy started eating that feeding was a struggle. Right from the get-go, feeding was not easy.

As an infant, she had a terrible time latching to breastfeed. We were constantly seeing lactation consultants with little success. Each visit, they would gasp in shock when they saw the damage breastfeeding was doing to my body, and would express that they couldn’t believe I was still trying. They repeatedly tried to help Maddy and I learn how to make nursing a more pleasant experience, but the only thing they had success at was getting me some topical antibiotics to treat my wounds.

For personal reasons (read: a family history of food allergies), I was desperate to solely breastfeed until Maddy was 6 months old, and wanted breastfeeding to be a part of Maddy’s feeding until she was at least a year old. Breastfeeding had become the worst part of my day (okay, of my every hour, or 2 hours if I was lucky). I would cry every time Maddy would latch, and Eric felt helpless watching, and not being able to help.

When Maddy was a little over 2 months old, I called my oldest sister, Lindsay, in tears. I wanted nothing more than to be able to breastfeed Maddy, but I was at my wits’ end. The last lactation consultant I had seen had warned me that I might need stitches if any more damage was done, and Maddy was making good on that promise. I tearfully expressed to Lindsay that I didn’t think I could keep going, the wound was now so large that it was painful even when Maddy wasn’t nursing.

Fortunately, my sister knew an amazing lactation consultant in Eastern Ontario who consulted with me over the phone/skype. Lyne was the key to our eventual breastfeeding success. Just to complete the story for those of you interested, I ended up only nursing on one side and pumping the other side to give my wound time to heal. I was warned against this by many other lactation consultants, but it worked. After a month, my wound was healed enough to not continue to tear (though it took another few weeks for the pain to subside during nursing), and I still had enough milk to continue nursing on both sides. Without taking that break, I’m sure that we would have eventually given up.

Toddlers who are discovered to have oral motor issues often have a history of difficulty latching while breastfeeding. You can read more about signs that your baby is having oral motor issues while breastfeeding here.

The feeding issues just continued when we introduced solids. You might recall that it took a lot of work with our occupational therapist to help reduce the gagging Maddy experienced while eating (this can also be a sign of sensorimotor issues). We have also spent a considerable amount of time trying to create a positive association with food, and decreasing Maddy’s oral defensiveness.

What are some other signs that led us to a feeding assessment to determine if Maddy was experiencing oral motor issues?

  • It regularly takes Maddy hours to eat (most nights it takes about 3 hours for her to eat dinner, and she’s often still asking for food as we’re putting her to bed). This is because it takes children with oral motor issues a lot longer to eat, which means it’s harder for them to get full. Maddy is always asking for food. Poor oral motor control might be contributing to that.
  • We would often see Maddy mouth stuffing. Although mouth stuffing is a normal developmental behaviour, it can also be a sign of sensorimotor issues. You can read more about it here. In our case, Maddy would regularly hold food in her mouth for a half hour without chewing or swallowing it.
  • When eating, Maddy often puckers her lips, the food sits at the front of her mouth, and she attempts to suck it. She often does this rather than chewing.
  • Maddy is able to chew long items (like pretzels) much better than non-long items (say corn puffs). This is because she is able to use her hand to place the pretzel in the appropriate place in her mouth for chewing. Interestingly enough, the more she chews the pretzel, the more of it ends up in the front of her mouth (no longer being able to manipulate its position in her mouth with her hand).
  • As I’ve mentioned before, Maddy has a very limited food repertoire. This is common in children with oral motor issues as they refuse food items that are too difficult to chew.

We were over the moon to learn today that although the local services for speech therapy requires you to sit on a wait list for some time, a child with feeding issues is seen immediately. Hoorah! We will be getting some more assistance from an occupational therapist and a speech language pathologist to help us sort through these issues (they warned us that it will likely be very slow progress and a lot of work for us, but we’re thrilled all the same). In the process, they believe they will also be able to assist with some of the other challenges our family experiences because of SPD.

acceptAt times like these, I still question why it seems to be Maddy who has all of these challenges (can we spread the load a little bit? :P). Reading through this fact sheet made me question why it is that Maddy seems to struggle with many of the issues that only some children with SPD struggle with.

I still don’t understand why it is that Maddy has these struggles – these struggles that have created an entirely different parenting experience and family life than we ever could have expected. I’m still working on the acceptance part.

What I do understand, is that our hard work is going to pay off. I was humbled today in our intake, as the therapists repeatedly patted Eric and I on the back for our ability to read Maddy’s cues, and respond to her needs despite going against traditional parenting advice. Making Maddy a big bowl of oatmeal at 3am, and sitting with her for 45 minutes while she eats it might seem crazy to some parents. But, we know that Maddy is truly hungry, and that if she does not eat, there will be no more sleep for her (or us). Feeding Maddy at 3am is a bit crazy, I guess, but we know that by doing that, we are setting her up to have a successful and happy day. One day, all of the hard work we’re doing will mean that the 3am snack won’t have to happen – until then we’ll do our best to enjoy the rare good, and embrace the less good with as much of a smile as we can muster.

 

Figure 8 velveteen scarf

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Remember when I had a mild obsession with velveteen?

Well, I searched high and low and couldn’t find any nice velveteen prints in any of our local stores. I tried to put velveteen out of my head, but the more I tried not to think about it, the more I was determined to find some. After a fairly lengthy search, I finally gave in to the shipping costs and ordered some online.

I was so excited when it arrived – and I love the fabric even more than I did when I saw it online. It is just gorgeous! It has been sitting neatly in a pile in my disastrous sewing space (we’re making big changes turning our loft into a sensory play room and my sewing area is temporarily torn apart). After a particularly bad day, Eric moved some tables upstairs, put Maddy to bed on a night that I was supposed to do bedtime routine, and told me to sew.

I pulled out the velveteen fabric and just held it in my hands for a few minutes. I was feeling really tired, and I wasn’t sure if I wanted to sew. I started dreaming of my finished velveteen scarf, and that’s all it took to get me going.

gorgeous fabric

The scarf is just as dreamy as I imagined – it sits beautifully, it is soft and warm, and the perfect accessory to a fall or winter outfit. If you’re like me and love wearing scarves in cooler weather, I highly recommend making yourself one of these.

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There is a free online tutorial for this figure 8 scarf by Anna Maria Horner. It’s a beautiful and easy project – a great project for beginner sewers. I finished my scarf in a couple of hours, with a couple minor bumps in the road. I had to use my seam ripper once when I accidentally caught my voile in a “sew only the velveteen” step.

There is one slightly annoying part to the pattern – the final step is hand sewing. The tutorial provides three very good reasons for why, and although more time-consuming than machine stitching, it is honestly not that bad. The pattern calls for a blind stitch, and if you’ve never done one, you can learn how in this video.

I’m so happy with my scarf, and I’m glad I have a few months left to enjoy it.

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SOS please someone help me!

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We’re eagerly awaiting the start of our SOS workshop, the feeding disorder program we’re starting at the end of this month. We’re taking a parent workshop provided to us by Thames Valley Children’s Centre. The SOS feeding approach is intended to help families of problem feeders (SOS has a really quick and easy to understand explanation of the difference between picky eaters and problem feeders). Maddy is a problem feeder, and this is why we’ve been referred to the SOS workshop (if you’re wondering if your child is a problem feeder, take a quick look at the SOS list of red flags).

There are many reasons a child may become a problem feeder. Some of these include sensory issues, pain associated with eating (food intolerances, reflux), and problems with coordinating the muscles needed to eat. The SOS program has a really interesting (and quick) read on the top ten myths of mealtime that I highly recommend to anyone who is interested in this topic. This list can help bring an understanding to some of the misunderstandings that surround problem feeding.

We are really excited to start this program, because despite the good intentions of the various professionals that have tried to help us with Maddy’s feeding issues, very few of them have truly got it. So many of the recommendations given to us were about withholding preferred food (crackers) and limiting Maddy’s intake of fluids. What I hope you have come to understand through reading my blog (and the additional SOS information provided in this post), is that although these suggestions may work for picky eaters, they do not work for problem feeders.

Maddy does not refuse to eat because of behaviour, she behaves poorly during feeding because there is a root issue that prevents her from enjoying eating. We have worked a lot with our occupational therapists on the sensory side of Maddy’s feeding, and we have honestly seen tremendous improvement. When Maddy was 9 months old she couldn’t tolerate a spoon in her mouth without gagging, and she had a food repertoire of three items, only one of which she would eat consistently when it was presented to her. Today she will consistently eat two to three food items when they are presented to her (gluten-free crackers, pasta, and usually waffles), but she will occasionally eat up to 25 food items. Despite this improvement, mealtime is still very frustrating in our home.

Mealtime in our home still means that most of the time Maddy will not eat more than a bite or two. It often ends with Maddy in tears. Many days Maddy asks for food repeatedly, but screams “NO” as soon as she sees what we’re offering her. She’s hungry, but for whatever reason, the feeling of hunger does not overcome whatever is preventing her from eating.

These feeding issues permeate our lives, because it is often the case that Maddy refuses breakfast and lunch, and then wants a meal while we’re out running errands mid-afternoon and don’t have a meal (or enough snacks on hand to keep her in non-meltdown mode). Some of you might be thinking that Maddy will eventually learn to eat when food is present to avoid being hungry (and this is the message that many professionals have sent us) – I hope what more of you are beginning to understand is that problem feeders will not learn this lesson the same way picky (or non-picky) eaters will learn it.

Conveniently, late in 2012 my sister, Lindsay, attended an SOS conference for clinicians (she’s a speech-language pathologist). She has been sharing a lot of information with us about what she learned and we’ve slowly been making some changes in our house. We’ve successfully implemented our first strategy: a change in Maddy’s high chair.

We originally had a very typical high chair:

first highchair

We absolutely loved this chair – particularly for its ability to fold compactly (it was very easy to bring this chair with us when we had meals outside of our home). However, Lindsay learned during her SOS conference that the first change that should be made is to a new chair that allows the child to sit at the table with the family. There are a handful of reasons why (and I’m probably missing some of them):

  • Sitting together at the table with the family allows mealtime to become a positive experience, and parents can model eating skills in front of their child(ren).
  • Chairs with adjustable foot rests and seats allow for an ergonomic sitting position (body, hips, legs should all be at 90 degrees) and provide increased comfort to the child while reducing as much external sensory input as possible.
  • When a chair can pull up to a table, it means food does not have to be placed directly in front of the child on a high chair tray. There are 32 steps to eating for problem feeders, with the lowest on the hierarchy described as “tolerates being in the same room as the food item.” There are three steps between this first step and the fifth, “looking at the food when directly in the child’s space” (say on their high chair tray). Yes, folks, some kids (like Maddy) actually find it too distressing to have some food items in their space. Just as an fyi, there are actually 21 steps before a child will touch a food item to their mouth, and 26 steps before a child will bite a food item.

We opted to buy a Leander, certainly not the cheapest of chairs, but Maddy already loves it, and we have high hopes for it. We decided on this chair over the Tripp Trapp after some amazing customer service at Springy’s in Hamilton. The chair is built really well, will grow with Maddy, and Springy’s recommended we keep it as a desk chair once it is no longer needed at our table.

Maddy absolutely loves her new chair (she was begging to get in it as Eric was putting it together). Introducing the Leander, accompanied by a varied set of facial expressions Maddy has started making in the last four weeks (hoorah!):

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While at Springy’s, we also sprung for a few new goodies to assist with mealtime: a dry erase place mat that Maddy can colour on, and some new divided plates (helps to visually organize the food, as well as separate different textures). You’ll notice in the photo below we have separated corn pasta with sauce from corn pasta with olive oil and garlic – this is because Maddy is really a no-sauce kind of girl. By presenting them separately, we know Maddy has food that she can eat to get full, and hope that with light encouragement she will progress along the eating hierarchy with the pasta with sauce (touch it, kiss it, etc.).

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The SOS program is another step in our feeding journey with Maddy. I’ll share little tidbits about what is working for Maddy so that hopefully some of you who also have problem feeders can learn how to support your child as they learn how to eat. We’re so thankful that SOS is rescuing our family from mealtime battles.

The apple doesn’t fall far from the tree

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Transitions. Ugh. Maddy hates them. So does mommy.

I have known for a long time that transitions are hard on me. Eric has known for a long time too.

I particularly struggle with transitions back into things that I don’t want to be transitioning into… like back to the daily grind after a holiday. I think the first time Eric really saw this was after a glorious week-long cruise with my sister Lindsay and her hubby Jérôme in 2008.

In 2008, I was in the middle of completing my MSc. and working part-time in a group home for individuals with intellectual disabilities (as a personal support worker) – this meant I was working an upwards of 70 hours every week, often without any days off in a month. I exclaimed mid-tears to Eric a week and a half before we left on the cruise that I had to go somewhere for my reading week – I desperately needed a break.

I was over the moon when Eric said he wanted to come with me, and the addition of Linds & Jérôme was an added cherry on top. We had an amazing time. Linds and I debuted our karaoke careers (and we were shocked when we weren’t selected for the Idol competition). We enjoyed champagne breakfasts, long, amazing, wet rain forest hikes (that sometimes ended in zero views because of complete fog – something we can laugh about now), a lot of laughs and a ton of food.

Just one of our many antic-filled days

Just one of our many antic-filled dinners

Enjoying our daily fro-yo

Enjoying our daily fro-yo

Our self-made post-dinner entertainment

Our self-made pre-dinner entertainment

The start of a great beach day

The end of a great beach day

Our Grandma & Grandpa routine

Perfecting our Grandma & Grandpa routine

Malibu tour in Barbados

Malibu tour in Barbados

Can never win a tan competition with a Frenchman

Can never win a tan competition with a Frenchman

We arrived home from Puerto Rico late one night, and the second Eric and I walked into my apartment I burst into tears. I had an amazing time – I just didn’t want it to end. Eric was completely baffled by my reaction, but fortunately it wasn’t enough to scare him off.

Fast forward four years, and here I am struggling to get back into routine after the Christmas holidays. Eric knows what to expect from me now during these transitions: a grumpy bear. He said to me on Tuesday night, “I know that you’re feeling upset because the holidays are ending, but you’re very grumpy.”

Eric’s comment really made me think about how much harder it must be for Maddy and kids like her who struggle so much with transitions. I mean, I’m an adult, who knows exactly when and how these transitions are going to happen, who understands exactly why I’m feeling grumpy, and I can communicate to those around me that I’m in a bad mood. I can totally empathize with Maddy – transitions are just no fun – but at least I’ve learned how to help myself get through them.

Today when I picked Maddy up from daycare, and her tears started the instant we got in the car (which is exactly what I’ve come to expect during transitional periods), I took a deep breath and remembered that she’s feeling exactly what I’m feeling, and this is the only way she knows how to express it. We are going to have to learn as a family how to ease through transitions, and our strategies will surely change as Maddy grows. But, on those days where our strategies seem to fall short, I just have to remember that the apple doesn’t fall far from the tree. And, if all else fails, I just need to dream of champagne breakfasts in Barbados.

 

It’s a Festivus miracle!

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I was feeling pretty stressed heading into the holidays this year. I planned for the worst, just in case. Our sensory survival kit was put to very good use, particularly the earphones. We had several very chaotic, busy days where we bounced around to various homes (as per our usual routine), but Maddy did amazingly well.

Christmas daySome of my favourite moments of the 2012 holidays include:

  • Seeing how mesmerized Maddy was by the Haines’ family annual Christmas sing-a-long (accompanied by piano and cello). After every song, Maddy repeatedly asked for more until the next song started.
  • Watching Maddy warm up to her second cousins at the Haines’ family Christmas. She sat on one of her cousin’s laps for most of the sing-a-long.
  • Spending a week with her cousins, Logan & Chloé (and of course her Aunt Lindsay and Uncle Jérôme). It was such a joy to watch Maddy run, giggle, dance, scream, and tear around the house with Logan. We’ve never seen her play in our own home the way she has with Logan here (and we’re hoping some of it might stick beyond Logan’s visit).
  • Maddy hugged and kissed me a couple of times!!!! Yahooo!!!!!
  • Enjoying a delicious (and quiet) New Years Eve dinner of duck confit after all three kids were in bed.

sleeping beautyBoth Eric and I took a full week off over the holidays – and it was oh, so wonderful to have a week at home with Maddy. One of the most relaxing parts of the week was not having to drive to therapy. We’ve been at therapy with Maddy 2-4 times a week for the last 10 months and it was really nice to have the break.

One of the reasons the week was so relaxing is that we had no demands on us. It didn’t matter if Maddy didn’t want clothes on – we didn’t have to work through a fit to get them on, because we were home, and she could just be naked. If Maddy didn’t want to eat or napped late it didn’t matter. We didn’t have to worry about her not sleeping at all if she didn’t eat all day, because we didn’t have to wake up and go to work in the morning, and we could alternate naps during the day. One night we watched her run around the house until 10:30pm because we couldn’t get her down for the night, and it didn’t bother us in the slightest. Consequently, our emotional reactions to some of her behaviours was a lot less, and I’m sure that impacted Maddy as well.

When life is on hold, a lot of the daily struggles aren’t a struggle, because they aren’t impacting our work, Maddy’s therapy, our sleep, etc. The reason they become so frustrating, is because of their ripple effects and the constant emotional reactions they create in us.

I’m looking forward to 2013 – we’re starting off with a bang by attending an SOS feeding workshop for problem feeders, offered to us by Thames Valley Children’s Centre, and seeing a specialist to work out if there are any medical reasons for Maddy’s lack of ability to sleep (also recommended by TVCC as Maddy’s sleep patterns are atypical for her age).

Happy New Year to you all. I hope your holidays were as enjoyable as ours were.