It’s been too long since my last blog post. After a few months of a hiatus, it’s like I’m starting over. Only this time it’s not all bad news. At least it shouldn’t be. Why then do I feel like the first verse of Robert Frost’s poem “The Road Not Taken” sums up what I’m about to write?
“Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;”
We’ve come to that point in the therapy world where we have to make life-altering decisions. One that affect us (financially more than anything) but affects “B” so much more. We’ve taken a 3 month break from food school. B’s therapist went on maternity leave back in October. I’m going to be completely honest here. I haven’t really been following through with her food program here at home, and to be honest she hasn’t really regressed. She also hasn’t made a ton of forward progress either. So it’s here we have to decide. Do we keep up with the program, or do we kiss her therapist for all her hard work and say goodbye?
Actually, lunch in the cafeteria has been fan-flippin-tastic! She knows when she needs to move and asks the lunch lady when needed. The rest of the time she tolerates the food and smells so much better than my husband and I ever imagined! At home, things are a different story. She continues to need the candle lit for various smells. She has to sit in the chairs at the table away from everyone else. She continues to have about 10 foods she’ll eat consistently. Of course, she has made small attempts to taste new foods (like the caramel apple cookie she tried at our family’s Christmas event). Oh, and after much reassurance, there was the time she tried the red/green salsa chips which tasted exactly the same as the ones she normally eats (she was totally thrown by their colors). However, we’re still stuck on the same 10 foods.
“Food chaining” is one of those terms you hear a lot in the “resistive eating” realm. Food chaining is where you try to get your child to branch out and introduce new foods that build on the characteristics and properties of the foods they currently eat. For example, B eats Tyson chicken nuggets. Food chaining would be trying a couple of different types of chicken nuggets. Once she accepts those, you’d move to chicken fingers, then chicken strips, then chicken patties, and finally work your way towards non-breaded chicken. For resistive eaters, it’s often times more complicated than that. Especially those with sensory challenges on top of eating issues. B has issues with certain textures, tastes, and appearances; so, even the slightest difference in chicken nugget brands cause her to turn up her nose and refuse to learn about them.
It’s this challenge that puts me back on that road. I stare ahead. I wish I could take them both. I wish I could see years down the road. Which one equals fear-from-food freedom? Do we continue to pour large sums of money into this program that has given us positive glimpses into mealtime frustrations, or do we continue to let her grow, play, work on her sensory diet in hopes that she will eventually “mature” out of her fear of eating? Does one road lead to a lifetime of picky eating? Does the other lead to a love of food?
I know Robert Frost’s answer. Take the road less traveled. We’ve done that, and while it has given B some tremendous coping strategies; it still hasn’t led us to where we want her to be. However, without food school B wouldnt’ be where she is today. If therapy were free, this decision would be so much easier 
I do plan on talking to her therapist about my concerns, but ultimately we (her parents) will make the decision on which road she’ll take. We only hope and pray that the road we choose is the better path for B’s future.
Comments
Sandra
WOW, awesome post. We have gone through that whole situation…WE opted out..Kissed them good bye and lived with it. WE regret it sometimes when he choose not to eat at a friends because they are not his “butcher” nuggets….but….we are making it work and he is doing GREAT at school so that for now is enough for us….You will question yourself, but know there is only so long we can walk that road without some time to rest…..
Jennifer
Have you thought about a rhythm and timing therapy or HIT? Often sensory issues and anxiety are rooted in the brain’s information processing ability, which can be off in teeny tiny bits and cause these types of issues. I’m not touting a certain therapy by any means, but the one that worked for us (and made life so much better) is called NeuroNet. There are others as well. I think iLS is similar. We saw huge improvements very quickly. While these rhythm and timing therapies aren’t a cure(also sometimes referred to as HIT – hemispheric integration), the one we tried really did reduce the severity of my daughter’s secondary symptoms. Good luck to you!!
ReinventingMommy
The choices are never easy, mama. Just know this – you can always go back. If you take a step back from therapy and you feel like you made a mistake, you can return to therapy when it makes financial and practical sense to your family. You can also talk to your therapist about doing consults every few weeks instead of weekly therapy.
Or you can just take a break from it all for a while and reevaluate your situation later. That is absolutely okay, too.
Feeding issues can be so tough to deal with at times. I have an almost 4 year old son with autism and SPD, but I swear that nothing has been quite as anxiety inducing as dealing with his feeding and swallowing disorders. There are no quick answers to feeding issues – though it sounds like your girl is making great strides! – so I think it’s okay to back off for a while to regroup, rest, and decide if a certain path is right for your family.
Just know that there are no right or wrong answers…there is only what is best for your family in this exact moment. Hugs.
kate blue
amen to this…we too know the struggle of limited therapy and having to have a break bacause of $ (our speech therapist out of pocket is $120/visit and the SPD OT would’ve been $460/visit….while my “B” doesn’t have food issues, we ran into the same struggle with the SPD (OT) and speech therapies. We are starting with a new (more costly per payck) insurance this year and after a 5 month hiatus, we have decided to go back until we run out of visits (again) since we have seen some progress but not as much as we’d like without it. It was good to rest mentally but it’s time to go back to multitasking. What we do once we start back is ALWAYS take a month off in the summer and then again maybe in December so that we (all of us) don’t get too taxed and that seems to work for us. Good luck and remember, the choices all differ from family to family- BUT we so understand and can sooooo relate!
jenny from the block
Hugs and good luck with your decision. I am dreading when Bud turns 3 this fall and therapy is not free b/c we cannot afford it, no way no how. Perhaps this is one of those times where no matter how much you struggle with th choice and no matter what choice you make, it will be ok either way and there is no right or wrong or best chocie, ya know. Hugs.
Just curious, b/c I have not attended food therapy. I thought we might need it for a while, but once we went GFCF their diets oddly expanded and so far we do not need it, but I digress…Does the therapist do things you can implment at home without her anyway, now that you have learned so much from her?
Heather F.
We are about to do the same with OT. Our boy now tests into the “normal range” for fine and gross motor delays. We have no insurance so we pay for OT out of pocket with no reduction
We have decided to keep the boy in therapy until the end of the school year, and then stop at the summer break. We know that we can always go back later if he needs it.