Tuesday, November 25, 2008

parent teacher conference and people's advice/opinions

Last Friday was Parent/Teacher Conference with Danny's teacher and it went pretty well. There were no real surprises. I knew he was excelling in the academic areas; he has known his shapes, letters, and colors since before he ever started preschool. In fact, I just realized that Charlotte who will be three this week still hasn't mastered her letters and even some of her letters, but by this age, Danny had.

I knew that he does well with routines and has been following the rules. I was worried when he entered a regular class, with many more students than in his special ed. class, that he would be prone to overstimulation. Overstimulation for Danny often leads him to yell, push kids and run into others and become really crabby and hard to calm. Also, he tends to have difficulty focusing. So far, these behaviors are not manifesting themselves, at least not in the classroom. Home is another story, but I won't get into that here.

The one major concern Miss A. has is his social interactions. Apparently, at school Danny will initiate play with other kids only on the playground. In the class, he tends to do more parallel play and rarely initiates play with other kids, but if another kid initiates it, he does join in. I have noticed during playdates with one or two kids, he does sometimes initiate play, so I am wondering if he is just a bit shy/reserved/overwhelmed with all the kids in his class. Am I just making excuses? I don't know.

I did ask Miss A. if she thought he would improve in this area, since I can't seem to help myself from seeking reassurance from the "experts." She wouldn't offer it; instead she was noncommittal and said she couldn't make me any promises. I can see where she is coming from, but it also annoyed me. What exactly did she mean by that? I don't know, but since he seems to do well with small groups, I have decided not to worry about it. He has made such amazing strides in the last few years, it stands to reason that he will continue to do so. He has never regressed, but has just progressed at a different pace than the average kid.

I suspect my sister thinks Danny has autism, even though he has been tested for it and was found not to be on the spectrum. She has made a few remarks to me and others which leads me to believe that she disagrees with the diagnosis. A couple of people (always people who are virtual strangers to us and who have only seen Danny once, and who are not in any way qualified or even knowledgable on the subject) have remarked that they think he is autistic. It makes me wonder if I am missing something. Am I fooling myself into believing he isn't on the spectrum? The doctor we took him to came highly recommended and she really seemed to understand Danny. Could she have been wrong? Does it even matter? Even if he were found to have autism, his therapy and treatments would mostly remain the same, so does he need to be labeled?

I know I said just a minute ago that I wasn't going to worry about it and here I am worrying. Sorry about that. I just have so many questions and so much confusion. I worry that Danny isn't getting sufficient therapy even though his OT says he is doing great. We work really hard with him and he is making tremendous strides. We regularly get him to do exercises at home that he refuses to do for his OT, so something is working, right? Last night, I talked to my good friend from MyShore about my financial worries and she gave me some great advice about gaining perspective. That is probably what I need to do about Danny right now. I am just not sure how to gain that perspective. And I worry that if I am not vigilant, I will miss something critical. Does any of this make sense?

12 comments:

Anonymous said...

Patty,
I'm a mom of two in Chicago, my son is 21 mos. and was recently diagnosed and began therapy for SPD. My daughter is 5 months old.
I found your blog while searching google for SPD info and have been following it for about a month now, give or take. I couldn't find an email address or box to send you a personal note, so here's a "nutshell" version of all I have to say for all the world to read.

I appreciate your wit and general approach to life in general. Your posts have been encouraging to me in many ways. It's good to read how another family is approaching challenges further down the road with older kids. I'm also grateful for the glimpses into how your faith plays into your family life. Not really a "Pollyanna" myself and constantly struggling to get my heart to accept what my mind knows to be true (and vice versa), I don't always accept the "challenging gifts" God gives with a "peace that passes understanding". It's evident that your faith is real. Too bad you don't still live in Chicago - you would probably be a great "mentor mom" for me!

Oh, and I fully intend to shamelessly ape some of the sensory games you play with your children when my kids are ready. Bring on the yoga mats and shaving cream!

Anyhow, thank you for everything.

Best,
Amy T., Chicago, IL

Kim said...

I think it's possible to worry too much. I tend to do it myself. I think with special needs kids we always worry that we are going to miss something, so we start wondering about everything. Sometimes I think it's best to take a step back and give it some time.

As for the autism diagnosis, here is my opinion. I would trust the doctor. The internet can be a great resource but it can also cause people to think they are experts on things they really don't know much about. Everyone thinks their an expert... but they're not. I would trust the highly recomended dr on this one. Especially, if like you say, he would be getting the same services anyway. There is no need for the label unless it would somehow benefit him with extra services.

Also, in my opinion, I agree that your son is likely just a bit shy. I am a terribly shy person. I do just fine with one or two people, but in a big group I freeze up. Sounds like the same thing is true for your son. Again, if it's not something that is holding him back in life, I wouldn't worry about it.

Take a deep breath, take a step back, and don't stress out.

Kim at Life With Meechi

mrsbear said...

So much of what you said sounds so positive. I know it's easy to focus on the one negative comment, but just reading about the conference it sounds like he's really doing well. As far as the Autism, use your instinct and trust your doctor's diagnosis, if you have doubts you can always get a second opinion but don't obsess too much about other people's advice, especially if they're looking at it from the outside and not living it.

Amy Jane said...

Patty,

You need to stop doubting yourself and your son right now. He's doing wonderfully, progressing in leaps and bounds, and benefitting from your ferocious love and diligence. No, he doesn't need to be labeled. He's Danny, and he's doing fine. And so what if he's shy in groups? That's a common issue in kids AND adults. It's no big whoop. Just take a deep breath, exhale, and smile, and know that he'll be fine. I firmly believe that. Don't ever let anyone doubt you or Danny or what you're doing for him.

goodfountain said...

Patty, our kids are leading parallel lives! What you worry about with Danny is the same stuff I wonder about for Chee.

I wouldn't worry about the social skills piece. I believe it will come. He's already demonstrating the skills at home and on the playground. In time, he will show it in the classroom too. It may never look the same as it does on the playground, but that's okay.

Chee is also not as social at school (playground or classroom) as she is at home or in smaller settings. Occasionally it concerns me, but I believe she will get there. As does her teacher.

As for the label ... unless you or the school think he needs special ed services in Kindergarten, I don't see a need for the label. Chee is going to need special ed help in Kindie next year, so the school is going to evaluate her and provide her with an Educational Diagnosis, probably of ASD or Asperger's. Developmental pediatricians have told me she is not on the Spectrum either.

Chee is different at school than she is at home, so at school that label may kinda fit.

As for your friends and relatives who think Danny is autistic ... *big fat eyeroll*. Unless they are experts they need to leave the diagnosing to the professionals.

I often say that Chee has one foot on the Spectrum. She's not got enough characteristics to receive a Dx, but she isn't totally "typical" either.

Hang in there! Of course you are worried. We're Mom's ... it's what we do. :-)

Quirky Mom said...

Patty, I've read and re-read this post trying to think of the right words, and I still don't think I have them. But I do want to say to trust your gut. If you have faith in the doctor who told you Danny does not have an ASD, then let it go. If that doesn't quite sit right, pursue it. In either case, don't listen too much to people who don't know your child.

AC said...

Take it a day at a time friend. You have a lot on your plate and God will meet your needs right at the perfect time. Just stay close to Him on your motherhood ride and you will know what to do when the time is right.

It is so surreal in detecting what is typical and non-typical for children at such a young age. My oldest daughter, age 7 is an Aspie and we had a wide array of opinion from the teachers, family and professionals. It is only now that she it has become more clear and her issues more concrete.

If you think your son would benefit from some sensory work then perhaps you could research a little bit about it and do some of the techniques from your own home. We spent a lot of money on OT services and now we just do it all on our own - swings, trampolines, etc.

You aren't alone. God will put you and your kids under His wing and guide you through this!

Lori at Spinning Yellow said...

The lines between one diagnosis and another have become so blurred. I would be willing to bet that you could find a professional who would give your son an ASD diagnosis, not that that is necessarily right. The important thing, what you need to keep straight, is that no matter the label, you are getting the services he needs. I've wondered over the years whether an ASD diagnosis would have enabled us to get more help (funded, also, btw) for Scott, but then I also know that he'd appear "cured" now and I feel that would be misleading.

It is difficult to know what the social stuff means b/c as I well know, you can't tease out the typical behavior or personality type from the "disorder".

We are pioneers in this new world of SPD and children on the fringe. We have to just keep doing our best and paving the way.

And as for his teacher and your sister, remember they might have their own agenda, like his teacher doesn't want to be accused of missing something and your sister wants to feel "right". Just sayin'

Elizabeth Channel said...

You are so not alone with what you are going through; let me just say that what you are experiencing is exactly what I am experiencing, which I am sure is why God brought all of us together.

I love what Good Fountain said about having one foot in the Spectrum. That's where we are, too.

Funny, my family always points to the Spectrum, too, particularly my brother (who parents a very 'in-the-box' type child) and my parents. Like your sister, they want to be right. They want to be the experts. They want a diagnosis they have heard of and can wrap their minds around. And that hurts.

As in your case, so many professionals have all said "no" to a Spectrum diagnosis for my son. And I had great comfort in sharing that information with my family.

Now I have one professional that says "sort of on the high end of the spectrum." And after dealing this for three weeks, I've come to realize that's OK because what matters in the long run is that any child is getting the support they need, regardless of a diagnosis.

The diagnosis does not define.

(Doesn't make it any easier to share this information with my family, however, because they will gloat and say "I told you so." Yuck.)

And Lori is *so* right about the blurred lines.

Please try not to worry about this or that word. (Sounds so funny from someone who has spent the last three weeks worrying about just this same issue!)

Why is SPD to easy to accept but ASD is wretchedly painful?

I just cling to 2 Timothy 1:7. I reject that spirit of fear! I embrace that sound mind!

Remember, it's big war we fight and the enemy will always go for your weak spot...especially when you are expecting. An incredibly low blow, but we combat it with the Word!

You are doing an amazing job mothering these babies. God is guiding you completely. Trust and press on.

God bless!

kia (good enough mama) said...

Patty, it ALL makes sense. I have many of the same worries as you. As parents, of course we're worried that we'll "miss" something or take too long to get help, etc. We're doing our best. It HAS to be enough. It WILL be enough.

lonestar said...

(((hugs)))

It sounds like you are already on the right track with getting your son the help he needs. I think the fact that he joins in when other kids initiate play is definitely a good thing, and since he initiates in smaller groups, he may well just get a little overwhelmed in larger groups. I know I tend to be quieter in large groups and open up more / initiate conversations easier in smaller group settings or one-on-one.

That's interesting about your family, ours was the opposite. When we first told people about the boys being dx'd with autism and spd, first of all they had no idea what they meant (well they thought autism=rainman and they had no clue what spd was) and at first a lot of them didn't believe it. We live pretty far from most of our family so they didn't have the opportunity to spend enough time with them to see what we saw. But every time we talked about our concerns we got the "but all kids do that," or "they'll grow out of that" response. One even told us not to let those doctors tell us they had autism. As if the doctors had cornered us on the street just to tell us that, rather than US seeking THEM out because of our concerns. Eventually they came to accept the dx and most of our family is pretty supportive these days. I think people mean well and don't always realize that their second-guessing is hurtful, especially when it happens over and over. The best thing is to do what you did, share what the professionals who are working with your child have said and what you know. You are the expert on your child more than anyone else.

Shellie said...

It makes total sense. You sound like a mom. I agree, if he's doing as well as he is, just give him time to keep blossoming on his own timeline but do keep an eye on him and ears open for more information or insights that may be helpful. Just pray to not miss anything too important and know that muddling and searching is all part of the learning process called life. Sometimes I really feel bad that I seem to find things my kids needed much later than the ideal, but we have all learned and grown in the struggle to find the answers. As for the diagnosis, if he's getting the same help, it probably doesn't matter much. I'm never sure if the diagnoses we have are more or less extreme than the reality. The hardest part for me sometimes is not knowing if they are all going to be able to function as completely normal adults or not. I'm pretty sure they are but the twins in particular, I'm nervous about.