Recently I commented on a post which a talented blogger wrote.
Lexi's blog is entitled "MOSTLY True Stuff," and I love it! www.mostlytruestuff.com
Lexi was posting on how she sometimes feels jealous of others who have kids who are typical.
My response was a post entitled "Gratefulness Improves Therapy".
Lexi commented on my post:
While I appreciate that you are trying to give parents "perspective" it
bothers me very much that you would belittle their struggles by
comparing them to parents who have it "worse." In my experience, this is
not helpful at all. What moms need, especially those in pain, trying to
navigate a new system of therapy, medicine, and education, is someone
to listen and to empathize with them. Yes, there is always someone that
has it worse. But that doesn't mean that what a mother is going through
isn't very hard.
Just because your child isn't in the hospital
doesn't mean that having a diabetes is hard. Just because my daughter
doesn't have diabetes doesn't mean that having a life filled with
therapy isn't hard. No one has won the lottery here. We're all just
trying to make it through.
As a mother of two children who have
had extensive speech therapy, I beg of you to not tell mothers whose
children you help how to feel. Your job isn't to give perspective. It's
to get our children to communicate.
And from me:
I am so sorry if it came across that I was trying to tell parents how to feel. That is never my intention.
What I am hoping to accomplish is that they focus on a child's strengths and the blessings in their own situation so that the child can focus on those, as well, instead of lingering in that dark place, where all is focused on the deficits or disability. (I've been there, so I know how being in that dark place feels...the hopelessness is so overwhelming.)
As I wrote in my blog post "Thank you, dough show! I can talk!" It took me weeks to convince a little boy that he was a "talker," because his school staff had convinced him he was a signer due to his severe apraxia. http://superbtherapy.blogspot.com/2013/03/i-can-talk-thank-you-dough-show.html
Gratefully, his parents were focused on the fact (blessing) that he could say "ma" and "da,"and that made us an unbeatable team. He was talking within 7 weeks, and two years later, he now is a chatterbox with plenty to say, working on his /r/ and consonant blends.
Before I was a speech therapist, I was a special educator for many years. Special educators are responsible for working on communication, fine motor, gross motor, cognitive and SOCIAL EMOTIONAL skills. That's where perspective comes into play.
Emotional state affects one's ability to move forward productively. I am also a believer in the power of positive thinking and optimism.
I have seen children whose parents were told by doctors that the child would never walk or talk, and have seen the child then do so. When parents ask me what I think will happen I say, I don't know, you don't know, the doctor doesn't know...the only one who knows is God, and God ain't talkin'.
I understand there is a period of shock, denial, acceptance, and a whole lot of "Why me?". I totally get that. Some days the "Why me?" takes up the whole day, and some days, we're too busy or too distracted with other things or too busy marveling in our child's cuteness and funny antics that it's more of a "Yay, me!"
I know your life is hard. I can also see, by the photograph of your beautiful daughter in that flowing yellow dress, and the comical "selfies" that she took of her dad in a towel, that you are frequently being pulled toward your blessings, like a small piece of metal to a powerful magnet.
Perhaps finding topics to write about in your blog is one reason your eyes are open to seeing all the small and big positives in your own life. In my mind, that photo and those selfies represent HUGE positive moments, a window into what is already a reality or a future possibility (a modeling career, the intelligence to maneuver the computer...realize what's going on...react appropriately via facial expression, then get over it...on to the next selfie...hmmm, maybe Daddy will open the door again).
Those huge positive moments deserve great celebration and lots of lingering in the positive feelings that they generate. Thankfully, you've shared them with many people, and that positive glow entered the readers' minds, causing a "blessings" kind of tingle. The fact that you posted the pic and the selfies shows me that you do realize their importance.
In my opinion, focusing on jealously of others who are more "fortunate" is a REALLY GOOD TOPIC for a blog, and getting others thinking, as you did me, but, again, in my opinion, it does little for getting your children to a better place...unless, of course, it lights a fire under you to give you the strength to keep keepin' on with the difficult situation and circumstances you find yourself in.
All of this is only my opinion. I own it that I am not a "typical" speech language pathologist. Because of my age, experience as a mother, experience as a teacher and special educator, along with my training in bilingual education, I stuck out like a sore thumb, as I studied for my degree. My thinking outside the box got me in lots of "trouble" while I maneuvered my graduate program later in life. But, now, after over 30 years working with children, and seeing all that I have seen. I am confident that my view of things is something that I need to share, even if, at first, it's not welcomed. The multitude of thanks I get, after the fact, is all the proof I need that I'm doing the right thing.
It's not easy for me, though, because I'm a sensitive person. Being told, in other words, that I don't know what I'm talking about is something I deal with all the time. That's when I recall all the kids who run into my office or welcome me at their front door with huge smiles on...all the kids who cry when it's time for our session to end...all the parents who tell me things are much better at school now, or that relatives are amazed that they can now understand what little Johnnie is saying.
Yesterday was a REALLY bad day. I even called my sister to tell her I felt disheartened (I don't think I've ever used that word before). A supervisor of a major organization chose to take the opinion of two people who (evaluated) saw a child for 60 to 90 minutes over my opinion (having spent numerous hours with this child in a family setting) which ended up having the child denied services. I was sick to my stomach. I felt extremely disrespected.
This supervisor has known me for 8 YEARS!
DOESN'T SHE KNOW WHO I AM AND WHAT I DO????? (Such a Reese Witherspoon moment) :-)
However, I took hundreds, possibly thousands, of deep breaths and I did what I usually do in this case...I offer inexpensive private therapy myself, because I'm ashamed that my colleagues are ignoring this child.
You see, this child is not sleeping, is biting, hitting, throwing things at people and talking very little. He is hurting his older sibling on a regular basis, and according to my more "respected" colleagues, all he needs is some time in a daycare...oh yeah, and his parents need some training, too, in parenting skills, even though they've raised two older siblings who don't bite, hit or throw things.
Yesterday, I went to this little boy's home bearing a piece of equipment...something I just discovered, and had tried with my own son, who had trouble falling asleep. It's an iLs (Integrated Listening System) pillow. I took a training for the related head-phone system about a month ago.
The pillow plays ambient music that has been filtered in some way. It costs somewhere around $280-$290; there is a multiple-pillow discount. http://www.integratedlistening.com/pillow/ Contact: Chris Dunbar 303-962-2517
I told mom how to use the pillow at bedtime, then we had a therapy session, during which he bit his mom. :-(
After giving her suggestions as we worked together, mom asked me, "Is there a book that I can read?"
"A book? I went to college for 30 years! I've read all the books! Just do what I tell you to do!" Then we both laughed.
All in all, I left there feeling a little better, because he did try to say my name "oh-eh" a dozen times and did blow on the pretend soup we were cooking, when I told him to.
Last night I received this text:
You are a godsend! Within 20 minutes of putting his head on the pillow he fell asleep!!!! Fingers crossed he sleeps all night. Thank you soooo much. Ur truly amazing and I'm so lucky to have u! Seriously love u.
OMG...thank you, Vivian, for helping me to keep on keepin' on, when I was feeling like throwing in the towel and going to live in a cabin in the woods...for real.
P.S. - This morning I received another text:
The kid slept 12 hours!!!!!
Noelle I heart u!
Lexi, I totally relate to and respect your struggle, and I hope to meet you and your wonderful family one day, in person, if you'd like. I only wish you the best and am grateful for your blog and your generosity is sharing your life with me. -- Noelle
My name is Noelle Michaels, and I am a speech and learning specialist.
Doing my job is a priority in my life. My training as a special educator has taught me to have a holistic approach and integrate all the child's skills to get the best communication results that I can.
I develop authentic relationships with my clients and teach through play. Those who know my work never doubt that I care about the children and their families.
This week was a struggle, but, after all the heartache and disappointment, I STILL truly love my job.
I am available for families in the North Jersey area to do a FREE 30-minute in-home consultation.
I am available via email or phone, and will speak to any parent or professional with questions or concerns for FREE. If you're outside my area, but are interested in me visiting you, let me know. I may be traveling to your area soon!
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Noelle Michaels, MA, CCC-SLP, LDT-C
Bilingual Speech Language Pathologist
Special Educator & Learning Specialist