Just thinking

Her hair grows so fast! I just trimmed it and it is in her face again. She adores playing outside, we have to pick her up to get her back in the house with us. She also loves to play in the dirt, and is getting pretty filthy. She often has black grime encircling her mouth.

Therefore, I am grateful she is tolerating baths better, no more abject terror, just some nervous singing. She does not having her hair washed either, she and Meghan both hate that.

She has had two sessions with the feeding specialist-OT. I think they want too much too soon from Amanda, I am happy with slow but steady progress, as professionals, they like measurable gains. I think we are going to have to agree to disagree with this one. She is bigger and taller, but still thin, maybe her bio mama was thin, her new mama is not, I definitely have some weight to lose.

We did a speech evaluation for her yesterday, truly could not do your typical exam with her, there was no pointing to pictures or responding verbally to anything. It was more of a question and answer session, but Amanda will begin speech too, so that is a huge relief for us, hopefully we can address her delays.

I have to be honest though, with all of these people looking at what my girls can do and telling me how to help them, I am feeling harried with all the demands placed on me for each girl. They all mean well and they are all kind and professional people, but it leaves me feeling inadequate and frazzled. “Feed her this way, hold her that way, do this when you play, use cards to help her communicate, use sign language, do you have this special spoon, do you use this book, that tool, this DVD?”

I remember going through something similar when Meghan had early intervention and joked then that she had 4 people raising her with me, her dad, the PT, OT and ST. While I joked, it felt extremely invasive. There has to be a fine line between helping your child to reach their maximum potential and interfering with their exploration and learning processes, how do children truly learn, and do we even know the best way to help them? If you read the post I deleted about schools, you will understand that I do not believe educators truly know how to teach children. They follow theories that in practice fall very short.

What has been interesting for me the rapidity that both Kara and Amanda have learned since coming home? Previously I followed along with the premise that without early intervention, a child with Down syndrome would not have the tools to learn, that perhaps their brains would fail to form the correct pathways for future knowledge without therapy. Yet both our littlest girls are learning what Meghan did, playing catch up. Yes, they are very delayed, Meghan is too, a full 4 years behind in many developmental milestones of a typical child, and she had early intervention. It begs the question, are the therapists and their ideas of what therapy should be failing the children? I know that I worked very diligently with Meghan, incorporating each task into daily living, we did our therapy homework on schedule with the exception of the year I fought breast cancer. I was not super cancer mom, you read about them, they cook, clean, and do everything they did before cancer diagnosis, surgery, and chemo despite their great fatigue. I had friends who did the same, most of them lost to cancer…I was so tired I could not stay awake for longer than an hour at a time. Would Meghan be further along without that break? I doubt it; she seems to learn at a specific pace regardless of what we try with her.

It was important to me to get both Amanda and Kara therapy as soon as I could and now I am thinking I should have waited a year to begin, they had enough to learn and adjust to already. Did I make a mistake? I think I did.