This morning, perhaps even while you are reading this, I’ll be speaking to the Child Development class at the high school where my brother teaches on the subject of identifying developmental delays in your child and working with your delayed child at home. That’s right, I’m gonna go pretend I actually know something about this when really I just made it up as I went along. I have a sneaking suspicion that the high schoolers will not know the difference {crosses fingers}. Ha. I am also going to try to look semi-professional (no skirt, I am not wearing panty hose in January for ANYONE) and to not say any offensive words such as “crap” or “sucks” or worse. Eeeek.
But anyhoo. While preparing for my talk, I got to thinking about what was the most difficult part of the whole “delays thing” for me – it was getting others to see Sophie for who she was, how she was, and what she could and couldn’t do. Part of Sophie’s deal was that she was super-shy and would not perform for strangers in an evaluation. Soooooo I had to convince said evaluators of what she was really like and keep her from being mis-labeled. (Why is it so important to put a label on everything – can a child not be shy anymore? Must everything be a syndrome?) Additionally, having a “label” was not important to me. Sophie had some delays and I wanted to treat those delays – the symptoms – I didn’t need to know the “cause” (if there was one) as long as they symptoms were responding well to therapy. On the other hand, of course, if it is required that your child be “labeled” so that he or she may qualify for the services and therapies that they need, well, that’s a necessary evil at one point. For instance, for Sophie to get into the preschool she needed to be in, she had to be classified as developmentally delayed, and as a “child with a disability” (the delays being the disability). This was totally fine with me if it got her into a classroom where she could get speech and OT and have an Intervention Specialist for a teacher. But there were some diagnoses I knew Sophie simply did not have, and I wasn’t going to let someone tell the world that she did. I knew her delays were temporary and she would overcome them with the right therapies and hard work at home.
After all we went through, it is my unchangeable and yet probably unrealistic opinion that a child should only be evaluated over multiple sessions in an environment in which he or she is comfortable. I think in a large percentage of cases, asking most of these delayed little girls and boys to perform for multiple strangers at a new-to-them location in a short period of time is just asking for really inaccurate evaluation results.
The bottom line is, don’t let anyone try to tell you something is true about your child that you know is not true. You may not have an expert degree in child psychology but YOU are the expert on your child.
Sure, in all things you should check yourself for the old denial. No one wants to recognize that their perfect child is not “typically developing”. It’s not fun, trust me. So you need to have people in your life who know your child and have observed them multiple times over a long period of time in an environment in which they are comfortable that you can ask, “Please be honest with me. What do you think? Am I incapable of seeing what my child needs?” This should be a person that YOU choose to trust with this question. And you need to be prepared to trust their answer.
Be your child’s advocate. That means champion their strengths and don’t deny their weaknesses. It means being willing to say, “No, you’re wrong,” to someone with a lot more academic degrees and “experience” than you have. Or it means being willing to say, “Ok, what’s next?” after hearing shattering news from that same person that you know in your heart is true. It means putting aside your pride and putting on your big girl panties (and distance running shoes) to dash headlong onto the path that you must take to get your child every bit of help that he or she needs to be the absolute best that he or she is capable of being.
Even as you are trucking along down therapy road, never stop advocating. If you ever feel like a therapist, teacher, or clinic isn’t the right fit for your child, don’t be afraid to make changes. Your kiddo is depending on you to steer this ship, and in the long run (and it may be a long run), it will be your privilege to do so.
Pantyhose, like ties and math are of the devil!
I don’t ‘do’ any of them!
UP
Oh, and BTW, very good.
UP
Excellent.
Love this! With Emmaline having Down syndrome, most people automatically assume that she isn’t smart, and therefore, don’t have any or have very low expectations of her. While she does have some developmental and speech delays, she has a ton of information stored in her brain. Now it’s my job to figure out how to get her to communicate what she knows so people can see how smart she really is. It’s definitely a learning process, but it has made me a better mommy to all our kids. Em knows her colors and shapes. She is great at matching, loves to read, and can draw a person. And her problem-solving skills are off the charts! We just rewrote her IEP last week and I chose to take their recommendations with a grain of salt. Since we homeschool, Em has a preschool teacher that visits 1x/week for 1 hr. While she is good at what she does, she also only sees Em’s personality and work for 1 hr. out of an entire week. And the school psychologist and other therapists only see her for an hour out of the entire school year. They may make a few keen observations, but they do not have a clue what our sweet girl is really like. Definitely stick up for your child, but be prepared to swallow your pride, if there is a delay that needs to be addressed. The goal isn’t to make you look like a bad parent, but rather to get your child the help needed so she can be the best possible version of herself.
Amen, that’s the goal exactly!
I can only say that Jenny and Jen C. are right on target. I learned that lesson as a Pre-K teacher. I observed and took notes on the children in my classes, which was very helpful and important in getting to know them, BUT, when I had one of my grandsons in my class, I realized what a limited view I had of him in my teacher role. Almost everything I knew about him was due to my grandmother relationship,not my teacher relationship. At the same time, there are no limits to the praise I have for the therapists and teachers who have worked with our sweet girl.
Love the line “No one wants to recognize that their perfect child is not “typically developing”.” Thank you for saying it that way. Too many would say “No one wants to recognize that their child is not perfect.” Your heart is revealed in your words, and I believe your experiences with Sophie will be an encouragement to many.
Thank you Karen! I hope so.
So good, Jenny! Those high-schoolers won’t know what hit ’em!
And yay for Sophie having you to advocate for her! 🙂
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Very well put! I feel like I’m in a constant race in dealing with Cameren. The race has provided outstanding results so far, but if I hadn’t had the courage to advocate for him, he would be just another statistic.
Oh, and there is NOTHING wrong with being shy!! I have a very shy little girl too!
I wish the race was a sprint and not a marathon…let’s get 26.2 bumper stickers. HA!
As a therapist in my former, non-mom life, I just want to say right on. Especially the part about asking for new therapists if things aren’t gelling well. I remember the first mom that said she wanted to try someone else and I was so upset. Now as a mom I want to go back and tell my former self not to take it personally. I would do ANYTHING to ensure my child was matched with therapy that would give him or her the most chance of success.
Any good therapist knows they have to weigh all sorts of observations about your child and take everything into account. While you totally know your child’s abilities some parents also don’t want to be truthful about what their children can do. I once had a mom tell me her son was crawling and when I held him he couldn’t hold his head up. So we have to be realistic on our end too.
One last plug to get your children services early. When kids are birth to 3 their evaluations and therapies happen in your home which is truly the best age and the best place for those to happen. The earlier the kids get therapies the better for them. So don’t ignore that inner voice that tells you something might be a little “off”. Evaluations are free. And if you don’t feel like you got a good one or accurate one, ask for another. Sometimes doctors don’t see what you see, sometimes friends and parents don’t see what you see. Don’t let anyone make you feel stupid when you feel like your child is struggling. You are their only voice!!
Totes agree with getting services early. Sophie was over 3 so she didn’t get any of the good, free, in-home stuff! And of course the earlier the better with this type of thing. And, the being truthful about what your kids can and can’t do. Gotta do what’s best for the kiddos even when the truth hurts.
This couldn’t have come at a better time. Thank you for the words of encouragement. Going tomorrow for the first IEP meeting for my 11 year old.
go get ’em Tiger Mom! 😉
I loved your blog when I first read it over a year ago, but I love it even more since you’ve been sharing your journey with Sophie. My son Alistair is about the same age I think. The way I see it is…I want him to get all the therapy he needs in order to have the opportunities in life. I want him to be able to communicate clearly his thoughts and feelings. I don’t want him to live a life filled with frustration. I was actually texting his teacher about his re-evaluation as I read this.
I was thinking that I’d homeschool him until I noticed at age 3 that his speech/language was much less sophisticated than his friends. So I’m the one who asked the doctor about an evaluation and that lead to speech therapy and to pre-k that Fall. We’re thrilled with the progress he’s making with his school speech therapist and his teachers both years have been wonderful. They’re always looking to get him all the help he can get from school. If I come across a teacher that he doesn’t work well with and can’t get him into another class, than I’ll teach him at home and try again the next year. I just want him to get the best education we can afford.
Right now we’re having him re-evaluated to see if he would benefit from OT. He’s always asking us to hold him really tight and I can just tell that something is not quite right. I have no problem at all saying that he’s “not developing typically” because his success and happiness is worth so much more than my pride. Plus, I bet there are lots more kids in his school who would benefit from similar services, but their parents are either too proud to admit it or they don’t pay close enough attention. Our smarties will probably surpass their peers because of the extra help we seek out.
My problem is knowing all the services and how to go about getting them. Thankfully, there’s another child in his class that receives all kinds of services because his mom has friends who have been there and done that. She’s always sharing good information with me, but I still think I’m probably missing a lot.
Great post, Jenny!
Since Seth was born 8 weeks early, he qualified for Help Me Grow and I am so thankful to have an extra set of eyes/hands make sure he’s developing appropriately. His OT comes to our home every other month now (it was once a month at first) and plays with him, talks with me about what’s he’s up to and gives great advice/activities on how to help him catch up.
So happy your Sophie’s doing so well – Love reading about her success 🙂
Thank you for such a great post.
At my son’s 3 year old appointment we decided to get him evaluated for ST. The first appointment she told me she was sorry, but she thought that he had autism. That rocked my world. I couldn’t grasp that or comprehend because he was behind in speech and autism didn’t even cross my mind. After a few therapy sessions, we decided to switch to a different therapist because I just didn’t feel right with this one. We finally got him evaluated at our local hospital with a 4 hour session where his official diagnosis is “developmentally delayed”. Nothing about autism at all. It scares me that that therapist would tell a parent that after an hour session.
Now he is in school and we had to go through the same evaluations you mentioned and at that first meeting they told me all this stuff my son COULDN’T do. I had to remind him that they were meeting him for the first time, that he was shy, he didn’t know where he was and who they were and of course he wasn’t going to “perform” for them! Thankfully, he is now in a preschool setting where the OT,ST and PT are so willing to help and tell me everyday how far he is coming along!
Melissa, I am so sad that a therapist said that to you after one hour! EEEK!! It gave me heart palpitations reading your comment.
Your school eval situation sounds identical to our experience. SO happy that he is in the right setting now despite the eval! That is also what happened in our situation – horrible eval, great school placement, teacher, and therapists. 🙂 So glad your little guy is doing great!
Oh WOW! You weren’t kidding about being similar – I’m not glad that both of us have the situation to deal with, but I am glad that we both have big mouths and are bloggers, because I think it’s so easy to get lost in the entire special needs at school world.
“if it is required that your child be “labeled” so that he or she may qualify for the services and therapies that they need, well, that’s a necessary evil at one point.”
The truth is that if your kid is different, they are already labeled; officially or unofficially. You might as well reap the benefits of it. It’s such a lousy game, with confusing rules but if you don’t play, your kid is the one who loses.
Well said, Jen, thank you so much for your comment. You couldn’t be more right.