What do I want for Maddy? I want her to be boundin’!
We had a breakthrough tonight! It was SO exciting!
We have been working on some strategies to address Maddy’s oral motor struggles. We were warned that it takes a lot of work for slow progress, and they weren’t exaggerating. But, that means when the breakthrough happens it’s time to jump up and down cheering – and really, who doesn’t like cheering?
One of the strategies is – get ready for it – chewing with our mouths wide open. We tend to only practice this strategy at home alone. We show Maddy how we move the food with our tongue onto our back teeth. We use our words to talk about putting the food on our back teeth. Then we do big, exaggerated chewing.
Although we’ve been doing this for a long time, Maddy has really struggled with being able to move the food to her back teeth, especially small foods that move with little effort. Tonight, we had black beans as part of our dinner. Maddy kept putting a bean in her mouth, and when she would imitate our chewing, we could see that the bean was actually sitting under her tongue (though, she was having fun doing the big, exaggerated chews, imitating my sound effects and using her whole head to nod).
After we practice chewed for a few minutes, Maddy let Eric put his finger in her mouth to hold the bean on her back teeth. But, every time her teeth felt resistance, she would stop the biting motion.
We decided to take it to the next level. We excitedly had her watch the bean get all mushed when we would chew. The first time she watched, she gasped excitedly – the bean looked different! The next time Eric held the bean in place for her, she went for it. Maddy gave the bean a huge chomp! Fortunately, she didn’t give Eric’s finger a huge chomp 😉 Maddy immediately spit out the bean to examine it in full detail. She was a bit scared by it, but baby steps, er, toddler steps.
Maddy chewed a bean! Huzzah!!!
A poem about children with hidden disabilities by Kathy Winters.
I am the child who looks healthy and fine. I was born with ten fingers and toes. But, something is different, somewhere in my mind, and what it is, nobody knows.
I am the child that struggles in school, though they say that I’m perfectly smart. They tell me I’m lazy — can learn if I try — but I don’t seem to know where to start.
I am the child that won’t wear the clothes, which hurt me or bother my feet. I dread sudden noises, can’t handle most smells, and tastes — there are few foods I’ll eat.
I am the child that can’t catch the ball, and runs with an awkward gait. I am the one chosen last on the team, and I cringe as I stand there and wait.
I am the child with whom no one will play — the one who gets bullied and teased. I try to fit in and I want to be liked, but nothing I do seems to please.
I am the child that tantrums and freaks over things that seem petty and trite. You’ll never know how I panic inside, when I’m lost in my anger and fright.
I am the child that fidgets and squirms, though I’m told to sit still and be good. Do you think that I choose to be out of control? Don’t you know that I would if I could?
I am the child with the broken heart, though I act like I don’t really care. Perhaps there’s a reason God made me this way — some message he sent me to share.
For I am the child who needs to be loved, and accepted and valued too. I am the child that is misunderstood. I am different — but look just like you.
Awhile back I mentioned that we were starting the SOS feeding program through our local public services. Unfortunately, they didn’t have enough children signed up to run the program, and the starting date was bumped… to today. We had our first session today, er, Eric did. Maddy is in the throes of strep throat so I stayed home with her.
It was great to get the first parent teaching session. We were disappointed to hear that there are still not enough children signed up for the group feeding sessions. They require at least four kids (but hope for more), as part of the success of the program is based on the environment – peer pressure, for lack of a better description. We will find out in the next week or so if they have enough, and if not, we will try again for this fall.
We did get a lot of good tips today that we are slowly going to put in place at home. The biggest struggle we know we’ll have with this is the planning required. Eric and I are fly by the seat of your pants kinda people, particularly when it comes to meals. We never plan meals in advance, and we don’t really have a regular menu rotation. We like trying new things, and Eric is especially good at preparing meals without a recipe. That is going to have to change, but I will share more on that another day.
We’ve already taken the first step of the program – I talk about it in this post.
One of the next things we are implementing is the 15 minute rule. Basically, that means that challenging meal times will never last more than 15 minutes. It’s up to us to decide whether or not the meal is challenging – and it’s based on the cues Maddy gives. If she is calm, and happily eating, it’s okay if the meal lasts longer than 15 minutes. On the other hand, if she’s agitated, upset, frustrated, or anxious, 15 minutes and we call it quits.
What’s the theory behind this rule? Basically, if a meal time is challenging and lasts longer than 15 minutes, the child will end up with negative calories. In other words, the child will burn more calories than they will consume. If there is always a preferred food item presented, 15 minutes is enough time for that item to be eaten. For Maddy, we know her preferred food items are pasta, oatmeal, waffles, risotto, and rice. These are also things she is able to comfortably eat with her oral motor challenges.
The 15 minute rule will be a big change for our house, but we’re ready for the challenge!
We have an assessment booked with a Psychologist. It’s coming up soon. I have had really mixed feelings about it. The feelings timeline looks something like this:
- Confused about whether or not we need an assessment
- Silly for thinking we need an assessment
- Convinced we do need an assessment
And on and on it goes. I’m still not really sure what the predominant feeling is. Every day is a new day, and looks completely different from the previous day. A very challenging day followed by an incredibly amazing day and vice versa.
Eric and I have decided that our only expectation of the assessment is that we hope to leave less confused than we enter. We hope the decreased confusion will help us focus our efforts to support Maddy’s development better.
A diagnosis might help us do that, but we have no idea whether or not a diagnosis is possible or in Maddy’s future at all. A diagnosis won’t change what Madeleine’s strengths and weaknesses are. A diagnosis won’t take away the things that she finds challenging, and it definitely won’t take away all that makes her amazing and special.
To be completely blunt, Maddy’s delay’s are not really a major concern of mine. A diagnosis in itself is not really a concern of mine. What is a concern of mine is her inability to perform many activities of daily living without experiencing significant frustration. What concerns me are the constant red flags that indicate that Maddy experiences the world as an unsafe place. It upsets me that because of these challenges, our family is really not functioning well as a whole.
We are working towards supporting Madeleine’s development, because we hope that helping her meet more of the age appropriate milestones will help with her frustration levels, and help her to find safety in the world. I don’t really think it needs to be said, but for the sake of clarity, what we’re not hoping is that we will change who Maddy is. We love Maddy for who she is already. We just want her to experience the feelings of safety and comfort that she (and everyone) deserves.
Will an assessment get us even slightly closer to that goal? We have no idea, but we’re willing to try.