Special Needs Parenting

Super Peanut Butter Applesauce

Packing in the calories for Hermione since  the cleft repair isn’t the easiest thing. We’ve had to get creative in order to help her grow (and we’ve seen some great weight gain in the past couple of months, she’s closing in on 20 lbs FINALLY!)

When she was on formula, we could just fortify it to squeeze them in. But we’ve been off of formula for three months now, and are on solids completely. With a cleft palate child, all of those food introductions get wonky. Normal kids get solids introduced slowly starting at 6 months, then gradually move to table foods by 18 months. Hermione didn’t get to start solids until she was more than 14 months old because of her palate. Most babies learn solids slowly, she got a crash course. She had to learn in a whole different way how to move foods to the back of her mouth.

Her palate is closed but still short and her uvula doesn’t quite fit to block the entrance to her nasal cavity, so we work hard to keep it from coming out of her nose. Table foods help a lot with that. But  she does eat some mushy kinds of things, like this recipe.

We aim for 1200-1500 calories per day. A normal 18 month old weighs 25 lbs and needs 900 calories to grow. Hermione is 20 lbs and has always needed more calories to gain, and that’s still the case. She burns more than normal kids, mainly through all of the awesomeness that she creates during the day. With four little mouths to feed, getting those kinds of calories into her can be a little insane. Hermione has the same thing for dinner nearly every night and this is it. She scarfs it and sleeps from 6:30pm to 6:30am on a belly full of super peanut butter applesauce.  It’s working well for now, but part of the fun of kids is that things are always changing!

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RECIPE

  • 3/4 cup applesauce (Yes this is the kind with added sugar, that’s intentional. We’re really just trying to pack it in with her)
  • 2 Tablespoons peanut butter (again, the kind with added sugar.)
  • 3/4 cup baby cereal

Mix the applesauce and peanut butter. Heat  until warm in your method of warming (microwave, stovetop, whatever you like). Mix in the baby cereal until it’s really chunky and thick, see below. You can add a little soy milk if you want it thinner, or use less baby cereal.

NUTRITION BREAKDOWN

Calories 505

Protein 10 grams

Carbs 78 grams

Fat 19 grams

Sodium 103 mg

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Categories: Recipes, Special Needs Parenting, Stories from My Life | Leave a comment

Friendship and the Special Needs Child

I’ve heard a lot of special needs parents talk about how their friendships are not able to survive the changes in their lives that come with having a special needs child. Friends who were once very close can’t cope with the stressors and don’t understand what life is like once you enter this dizzying world of doctors and hospitals, specialists and future which could include things that you as a parent are suddenly too terrified and dismayed at to even face in the daylight.  A lot of parents that I know in the special needs community say that its because they talk about their children too much, that friendships become strained because their lives are a series of difficult times that their friends are not able to support. It’s because of the burden that their friends aren’t willing or able to stick around.

It’s important that parents have those friendships. Studies show that a wide group of friends increases health and happiness. People who have a rich life of friendship live longer and are happier. Even for parents who’s children don’t have challenges, it can be difficult to maintain friendships as life gets more hectic.

I have come to a revelation about the issue as there has been some strife in my longtime friendships recently.

I am different now than when Hermione was just a twinkle. I am stronger. I am more convicted about my beliefs. I am more willing to voice them. I am a fighter, with a will of steel. I am able to make sacrifices and decisions that I would never have thought possible. I am also more patient and understanding. Rather than feeling a lack of control in my life, I see how much control we do have to shape our world. I don’t bemoan my life but I also don’t apologize for who I am. I have newfound confidence in myself.

These are all things that were inside of  me well before the surgeries and the ambulance rides, the long nights of worry and the demons that come to chase away my sleep too often.

I do think that sometimes my friends don’t understand the depth of these changes in my life. Maybe I don’t talk about them enough. I’m not generally one to complain about the way things are, or at least I don’t think I am. Life is a gift and I’m thankful for it.

Since Hermione came to revolutionize my life, I only find that I have room for people who treat me with kindness, openness and respect. My life is rich and full, and plenty of drama comes from reality. I expect friends to talk to me about what their issues are openly and with trust as that is how I approach the people in my life. I fight enough with things, and I will not fight with my friends.

So when special needs parents say that they have lost friendships over their child, I can see that it may be the case for me as well. However for me it’s not because of the burden that she is but because of the tremendous gifts that she has given to me. I am more than what I was before she came.

For there is a friend for his own occasion, and he will not abide in the day of thy trouble. And there is a friend that turneth to enmity; and there is a friend that will disclose hatred and strife and reproaches. And there is a friend a companion at the table, and he will not abide in the day of distress.

Ecclesiasticus 6:8-10

Categories: Special Needs Parenting, Stories from My Life | Leave a comment

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