Some of you will know that Siobhan has a lot of developmental delays from spending age 0-4 between the hospital and orphanage. I’m very pleased to say that in only one year she has progressed to approx. 3 year level in speech (from only babbling) and cognitively she is all over the place BUT this includes being on target or ahead in certain concepts! I could not be more proud. Gross motor she is still delayed when it comes to transitions such as “sit to stand” and things such as stairs and hopping etc. She is still only about the size of a two year old according to growth charts. She has grown 5″ and gained at least 7 lbs.
Our toughest challenge has been in the area of feeding. I will preface this post by sweetly asking all of you, to consider that her delays are fairly personal. I really struggle to find a balance of privacy vs. sharing to help others. I don’t share our challenges in order to be the topic of party conversation, and while I am happy to answer questions for people that need help, I don’t find it very appropriate for people to be asking for detailed information at social gatherings. I bring this up, because recently we went to a wedding where casual acquaintances and strangers were approaching me and asking very private questions about her recent surgery, eating habits, etc. And from a place of morbid curiosity, and not much else. From that moment, Jason and I decided that we can’t share as much as we have been. That was not only inappropriate, it was very hurtful. We were hurt because close family and friends we had trusted were clearly oversharing a lot of details about our life (not all of the info was public.) Mostly though, we were very hurt for her. If she was older and could understand, I can’t imagine how embarrassing it would be for people she does not know to be asking about what foods she can and cannot eat, when she can expect to be eating more, why she won’t try certain foods, and worst of all, private questions about her body. It actually boggles my mind that people would be so insensitive. I hope that you can understand now, that we share what we share in an effort to be open and show others what life is like for families of kids with unique challenges. We hope to encourage others that if we can do it, so can they! We do not share because this is an interesting experiment of some kind. Thank you.
Moving on, I am not an OT, SLP, or otherwise trained specialist. I am just a mom who has a hard time getting appropriate services for her child. Other Canadians will likely share my frustration, because while everything in our system is free and I love most of it, some things fall between the cracks and we have been waiting an extremely long time and done a mountain of paperwork and have yet to get the specific help we are after. So no hate please!
Before you begin it may be a good idea to look into Sensory Processing Disorders (SPD) and get a basic grasp of them. For children raised in an orphanage, they often miss out on crucial stages of development such as oral exploration. They were not babies that were free to roam around, get into things, and put everything in their mouths. This may seem like a pain with the average child, but it is so important! Siobhan missed some of these times, and therefore cannot tolerate certain textures. This is not restricted to oral, this means not to touch or play either. For example, she would not have touched playdough with a ten foot pole when she first came home. She still screams like a banshee if she gets food on her fingers. There are actually a lot of little quirks that seem unrelated, but come back to a lack of sensory experience. For my purposes I am going to try and find some things that work, and concentrate on the “how” in my posts and not the “why.” There are a lot of resources about the psychology behind the oral aversion and not really anything related to activities you can do at home. The most important thing to note is to not further the problem by forcing or otherwise making the experience unpleasant. We even had a surgeon tell us that we need to start pushing her, and that goes against anything else you will read. Your kid is not a brat.
Here are the items I decided to try out over the next few months and I will keep you posted with what works or doesn’t work for us. I’ve decided to start by doing some pretty extreme regression. I’m going to do my best to recreate some steps from babyhood that Siobhan has missed.
The books I hope will be helpful to get us into new texture territory. As it stands, there is a hard stop where food becomes an unacceptable texture for her. It’s not quite as simple as with a typical baby where food gets progressively thicker, and she will continue to eat it, there are certain foods where a slightly thicker consistency is acceptable, but very few, and only those choice few. Nor will she try anything in a solid state, no matter how soft it may be (think cubed and cooked sweet potato.) Babies have an instinctual willingness to put any and all new things in their mouths, food or no. Kids with sensory trouble are not so willing.
Here are some more goodies:
Let’s break it down:
This straw is the only one I could find that has a firmer and more flexible material than a regular straw, and isn’t just hard like the plastic kind from reusable drink cups. I think we will try to practice biting down using the tubing, and the glasses will also make it more fun. We are lucky in that Siobhan has no issue using a straw, so this may stand a chance of actually going in her mouth.
This little finger toothbrush is perfect to get a new texture in her mouth under the guise of brushing her teeth (which was originally a battle but has become acceptable.) Once she gets used to it, we can try and have her bite down on it. Biting and chewing are what we are working towards with all of these items.
I bought a selection of teething rings to practice biting down, and they have many different textures. The bottom ones are the kind you freeze, so that will add an extra sensory input.
Yes, even certain utensils will be rejected. Siobhan will not eat off of a fork. It does not matter if it is her favourite food. Forks are weird. She’s come a long way, because originally only very specific spoons were acceptable and now she will eat off of any spoon. I plan to use these to stretch her comfort zone. These Take n’ Toss ones are perfect because it is actually quite hard to find a nice narrow fork without big gaps in the tines. For our purposes the forks need to be able to hold purees.
Like the Orajel set, these Nuby brushes should be able to segue nicely into our tooth brushing routine. I also plan to have her eat off of them eventually like a new utensil. They are also nice and long, so we will be able to hold them between her molars and practice biting. I have tried in the past to get her to eat off of these, but you can guess how that went. We will have to start small with the brushing.
These guys are going to be one of the final steps to actually chewing and swallowing. They are designed for babies to be able to munch foods through the mesh and eliminate choking hazards. Again, with a typical baby they can happily munch away on the mesh without many questions, but for the more discerning 5 year old, these are like eating Spongebob.
That’s all for now! I will get to reading and keep you posted. I will also try to collect some more links and free resources to share here. Facebook groups are also great to share new food ideas. I’m in a couple good adoption groups, but I’m sure if your child was not adopted there are probably some great groups for SPD.
Wish me luck!