So today was our first "official" class of The Munch Bunch....this has been a DREAM of mine for at least 5 years and to have it come to be is a bit overwhelming and a bit stressful. You see, I am a class A, number 1 PERFECTIONIST. Now, I may not always LOOK like I am (just come look at my office or the inside of my truck/mobile office) but I can tell you for sure that I am. It took me a LOOOONG time to figure out that my "procrastination" problem, in certain areas of my life, was due to the fear of not doing it perfectly.
I'm trying, trying, trying to just "let go" and appreciate and see the beauty in the entire process of starting a new program. Reminding myself that we WILL have bumps along the way, we WILL need to scrap some ideas, we WILL need a "plan B" and we MIGHT not reach every participant right away. I'm trying to "rewind" and "playback" the mom today who said "she's just never played with food like that before!" and experience her JOY in seeing her non-eating daughter interested in food....she saw the light at the end of the tunnel and THAT is what it's all about, right? We gave her HOPE.
So, even if I didn't cue my music just right and didn't follow my laminated agenda complete with times just perfectly....I WILL remind myself that I'm doing it. I'm making my dream a reality and by doing that I'm going to help a lot of non-eaters or picky eaters ENJOY food and BECOME eaters and they are really NOT going to care if I cued the music or followed the agenda in the process.
Remind me of this from time to time......:)
So I find myself answering this question ALOT lately. I also find that I'm hearing more people say "oh, everybody is getting some diagnosis of something or other", "everybody is 'on the spectrum now', "I don't want my child labeled", "I don't want my child to 'become' the diagnosis", "what difference does it make if we put on paper 'what' a child has?".......Whew, makes my head spin. I know it might surprise you, but sometimes when I hear these things (depending on who is saying them or where I am) I just let the statement go without comment....SURPRISED? I bet, especially for those who know me really well! :) Anyway, sometimes it just isn't worth getting into the meat of the matter with someone. The times I will ALWAYS answer or make my opinions known is when I'm asked by a parent who has just been told that I, or some other professional, thinks that their child may indeed have __________. So here, in no certain order, are my answers....(1) a diagnosis gives us "someplace to go" a "map" if you will. It allows us to move forward thoughtfully, with a goal in mind without having to "wonder" what is wrong or what treatment techniques will work (2) a diagnosis gives families support...much needed support. I was told once,by one of my parents whose child has Down Syndrome, that going to the Down Syndrome support group gave them "hope." Seeing children at various ages and stages of the diagnosis allowed them to set reasonable goals for their child AND gave them "hope" for the future. It alleviated anxiety! Imagine that! A diagnosis alleviating anxiety...(3) a diagnosis gives those working with our children more information on how to teach them, coach them and HELP them. It DOES NOT limit them as one initially thinks. For example (borrowed from a real life example of a friend who is a coach) as a coach, knowing that a child has a diagnosis of Autism may actually help that child reach their FULL potential as a ball player etc..HOW ? because the coach KNOWS how to help them then. They would KNOW that they would need to prepare them for changes, explain plays in a different ways, teach new skills in a different way etc....by keeping this a "secret" from a coach you MAY actually be doing more harm than good and keeping your child from having a positive experience in a "typical" peer group activity (something that children on the Spectrum SO desperately need). (4)a diagnosis CAN offer financial support. For many of our children, therapy is an ongoing and MAJOR expense. Insurance companies are more likely to pay for therapy services if there is a diagnosis. (5) a diagnosis, as our children grow, gives THEM understanding of what makes them tick. It allows THEM to navigate more appropriately and easily. It helps them know their limitations and their strengths.
Certainly not an exhaustive list but these are some of my top reasons why a diagnosis needs to be made. My hope is that eventually, we see a diagnosis as a positive thing and not a negative thing. I think education is the key and I certainly will do my part to try to make this a reality. My hope is that we will become more comfortable and accepting of a diagnosis and see the POSSIBILITIES it offers us instead of the IMpossibilities.
I find myself needing to remind people that sometimes.....even if we are well meaning and have some experience in certain areas, that we should just leave well enough alone or refer to the "expert."
Case in point. I found that part of my job yesterday was "damage control" because of something a well meaning but non-SLP said to a family regarding their child's speech and language skills. What initially, for the family, was cause for concern and a sleepless night turned out to be a celebration after we spoke. One of the many things I LOVE about my job. The giver of the initial information was not trying to cause this family anxiety and I truly believe that they thought they were correct BUT in the end they were VERY incorrect and caused needless anxiety for my family.
I know we can't stop situations such as this from happening BUT we can try to become more responsible professionals and more responsible consumers by going to the "expert" and not accepting information as truth if it doesn't come from the person who is trained in that area.
As a professional that has worked on countless pediatric therapy teams...I may THINK I know what a child needs in terms of core support for feeding because I've dealt with this issue on other teams, with other therapists and perhaps with my own child BUT I should NOT suggest or state as fact that "this is what you need to do" because it is NOT my area of expertise. I should say "check with your child's physical therapist to see what they would recommend for increasing core support." ALWAYS defer to the expert in that area. This is ESPECIALLY true when "labeling" certain behaviors ("So and so did things like that and they have Autism") and stating age levels ("oh well, my child does the same thing and we were told that her language age is ______"). As an SLP, with many years under my belt of evaluation and treatment I STILL need to refer to my evaluation materials to get accurate age levels and I'm the "expert!"
In this time of being inundated with information from the internet, books and friends we must still remember that there are specialized professionals for a reason. Even IF you think someone may be on to an answer when they suggest something.....ALWAYS go to the expert/professional in that area to confirm or deny that information. Further as professionals(especially those who work on "teams" with other disciplines) we MUST, even if we have seen it a thousand times, DEFER to the professional who treats the condition or we risk a situation as I shared above.
My personal favorites????? "he'll eat when he wants to" "oh, my brother didn't talk until he was 5 and he's fine" "oh, she's just a pointer and grunter kind of child."
Bottom line.....BE A RESPONSIBLE COMMUNICATOR WHETHER YOU ARE THE GIVER OR RECEIVER OF INFORMATION.
So today I set up my first ever web page. It's not the best but it's not the worst either. It will, hopefully, serve a purpose and get our information out to more people. I feel EMPOWERED with learning how to do this. I never,ever thought that I would be able to set up my own page. I'm feeling very proud of myself tonight.
I'm getting excited about our new directions for 2011. Having the state change their Early Intervention provider guidelines turned out to be the kick in the pants I needed to get moving with new programs that I just haven't had the time to do in the past thirteen years(I can't believe I've been in business that long) . My mind is going CONSTANTLY and I am hopeful that within the next year, I can explore some of the ideas I have floating around in my brain.
I've only had a couple of nights where I lay in bed thinking "what if I didn't make the right decision?" .....I quickly realize I did though when I check my voice mail and find a new client on the other end asking for information about an evaluation. I'm sure I'll have a few more sleepless nights but I also know in my heart that I'll have more than a few AWESOME days with my work.