Normalcy

Daddy came home last night, then I took Grandma back to the airport and today begins returning to our "normal" life. Daddy was greatly missed, it is obvious, the kids can't get enough Daddy time today.

Friday we took Grandma to Cherry Lake for a little swimming and relaxing. Saturday we took her to Tioga Pass, stopped at Tenaya Lake to build sand castles, did a little exploring and just enjoyed the beautiful scenery that is Yosemite.

While Daddy was gone I finished tiling the bathroom floor, now I'm ready to grout, it's time to pick our grout color. It'll be nice to get the toilet set and the bathroom at least halfway functioning until we finish the shower.

Thursday for therapy the therapist and coordinator were here discussing Mr N's progress. It was not a pleasant day. They again insisted that in order for Mr N to progress at the rate, and in the areas they want, that we need to push him to the point of meltdowns until we have a "break through". They say that his lack of progress is primarily due to non-compliance and that once he has his "break through" he'll be more compliant and be able to do program after program and master all the goals they have for him.

We are not willing to let Mr N get to the point of extreme meltdowns until he has a "break through" in order to achieve compliance. I'm not sure what happens from here, I don't know if they'll just stop services because he's not progressing enough or what really happens. We have another meeting on Thursday to discuss his transition from early intervention into education services and to set his IEP.

My personal opinion on the letting a child meltdown until a "break through" is that it is unnecessary and not beneficial. I've read many opinions looking at both sides of the technique. I want the very best for my son, want him to have the very best services, and to have the best chance at recovery; despite what his therapist and coordinator may think. But I absolutely do not want my child to endure frustrating meltdowns, that I feel will break his spirit and cause him to lose his drive. I've read that some kids seem almost robotic after receiving ABA therapy. I don't want a robot, I want my spirited, lovable, little guy. I want him to learn and grow and progress through natural setting therapy. I think that some of the teaching techniques are so awkwardly introduced that even a neurotypical child would not respond as well as they'd like. Mr N may not wave on command, but he certainly waves hi and bye at the appropriate times. He may not touch head, nose, mouth, tummy while painting or during puzzle time, but he does during bath time or just general play time. He may not raise his hands in the air at the request of his therapist, but he will when I tell him to raise his hands so I can take off his shirt. He does things at appropriate times that he will not do during therapy.

This is not to say that I don't think therapy is helping, just the opposite, we feel that Mr N has made great progress and huge strides forward in speech and social situations. We are astounded by how much progress he has made in such a short time, without pushing him to meltdown. To be clear, we have no issue with placing demands on Mr N, or teaching him to obey and follow instructions. We do this on a daily basis without an ensuing meltdown. He complies and follows instructions from us on a daily basis, some of the things he routinely does when asked are getting a diaper, putting something in the trash, putting toys away, getting an item, sitting down, and standing up.

Mr N doesn't just do these things for Mommy and Daddy, he will do them when asked during an appropriate setting by others, as well. Grandma asked him to put toys away, he complied, Grandma asked him to put a DVD on the entertainment center, he complied, Grandma asked him to raise his hands so she could change his clothes, he complied, Grandma asked him to put something in the trash, he complied. While Grandma may be family, she only sees him every six to eight months. Mr N will also comply when we are at meeting and someone tells him to stop running. While Mr N isn't mastering the skills needed to progress in therapy, I'm not 100% certain that non-compliance is the issue.

I'm beyond frustrated, upset, and stressed over the way things are going with therapy. We want Mr N to continue to progress and move forward towards recovery, but not be forced, coerced or guilted into complying with techniques to which we are adamantly opposed. There is a saying "once you've met a child with Autism, you've met one child with Autism". Honestly, that applies to most children, but my point is each child's therapy should be geared towards them and meet their needs. Maybe some kids do well after having a "break through" and their parents are happy with the way their children behave afterward, but not all parents, and we aren't willing to take that risk with our child. He's still our child, we still get to make these decisions.

I am becoming concerned with Mr N's recent tendency to hit people. He tends to strike out when he's frustrated by someone or something. I do not want him to be violent, I don't want him to hit me, his dad, or his sister. I don't want him to hit anyone. Last week, he hit his therapist twice, that bothers me, a lot. I'm not sure what's compelling him to hit her and I desperately want this to end, not get worse.

I was delusional to think that the stress and frustration would end once we got a diagnosis, I naively thought that therapy would go smoothly, that we'd only see progress. I did think that progress would be slower and harder to detect by us as his parents. It's frustrating to know that we see progress, our friends and family see progress, but his data sheets show very little progress. As a parent, I want to think "who cares what the data sheets show, he's making tremendous progress and I'm so proud", but is that really the right attitude? If he's not excelling now, how will he do once he gets older? At what point would we expect more results on paper? Do I make too many excuses for him because he's two? Would I be so skeptical and so cautious if there were solid statistics supporting these therapy methods? I don't want to be the one holding my son back from progress, I want him to excel.

Maybe the disconnect is the type of progress he's making, our goals for him were to increase his speech and teach him to be socially appropriate. He came up to me five minutes ago and said "mama, I love you". As a parent, those are the words I want and need to hear, that's the progress I was looking for, but is it enough? We are happy, possibly even satisfied with him saying "balloon, ball, bath, bye, and bottle" even though he won't say "ba and bo" which he needs to master for therapy. He says "mama, milk, mine, and moo" but he's not mastering saying "mi, ma, mo" for therapy. Are we expecting too little of him? Are we setting the bar too low so that we can rejoice over his accomplishments?

It's so hard to know what is right, what to do, where to go from here, and how to proceed. But I do know that as a parent, we can not subject our children to things that we don't feel will benefit them. I also know having my husband 100% on the same page, reassures me that we are doing the right thing with refusing to subject him to meltdowns to achieve a "break through".

It is my greatest hope that Mr N will do amazing in therapy this coming week, master some programs and move forward the way the therapist and coordinator desire.