Tuesday, March 27, 2018

Comparing Mom "Perfection"

In an episode of Speechless, the special needs moms get a new member of their support group- Becca, who seems to be perfectly put together.

She had perfect hair and makeup, brings a gorgeous homemade dessert in a homemade box, and when they visit her house, she has a walk-in pantry that was Pinterest heaven.


I have met lots of these moms, but when I get to know them, I find out that yes they are amazing, but also, they all have some flaws; we all have things that just don't get done.

Let me tell you- I was sooooo relived to find that out, because I was convinced that compared to others, I would probably win an award for World's Most Mediocre Mother.

Me? I loathe giving the kids baths. I detest every second of it- the suds that always get in their eyes, the water that gets EVERYWHERE and makes me have to mop after, the slippery kids that seem to instinctively find a pile of dirt immediately after baths, and roll in it.

Then OF COURSE I compare myself to the moms whose children are always smelling flowery, with clean, cute hairdos, and rosey cheeks from their mom actually washing their faces daily with a washcloth.

Those are not my kids...


In my house, lots of things DO get done! I am super OCD about filing papers neatly, making healthy snacks, reading daily for 30 minutes, and doing therapy.

But other things, not so much. I already said how much I hate giving baths, I never do dance parties with my kids, I can't even tell you the last time I washed my sheets, I always end up putting my foot in my mouth when I meet people- I am not eloquent at all, and I am a terrible listener.




We all try to show our best side, I know I do! But I have also realized that no one does it all.

We do our best, and try daily to improve, but sometimes, things just don't get done.

And that is okay. We all have strengths AND weaknesses.


Comparing my weaknesses to someone else's strengths accomplishes nothing but lowering self-esteem, and how often do we do that?

The answer- too often.

We all do our best, and that is EXACTLY what our family needs.


Every child, every family is different, and has different needs. Moms know what those needs are, and use their unique skills to fill those needs.

Moms, you are awesome!!! Forget comparing- YOU are exactly what your family needs!!!




Wednesday, March 21, 2018

What is PROMPT?


The earliest kind of speech therapy we did was the PROMPT method, and it was this type of speech therapy that gave Chelsea her basis of sounds before we started on actual words. I learned about PROMPT from attending one of the CASANA, now Apraxia Kids, national conferences and going to a lecture about it (which I HIGHLY recommend- those conferences are incredible)!
Old Logo
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What is PROMPT?
PROMPT stands for Prompts for Restructuring Oral Muscular Phonetic Targets. It uses touch cues on the child's mouth, lips, and tongue to guide them through a target sound or word. The PROMPT Institute is the organization that trains all the speech therapists in this method. 
  


What was my experience with PROMPT like?
I really liked this method, and highly recommend it as a starting point for kids with few sounds. When Chelsea started official speech therapy just before she was 2 years old, she had a grand total of 2 sounds. A high-pitched squealing "Iiieeeee" noise, and a repetitive "da-da-da-da" sound, neither of which she used for any functional communication. 

Despite my very best efforts, she couldn't say "mama" or "ball" or any 'normal' words or sounds you would expect from a 1 or 2 year old. We started PROMPT, and it took a long time- about 9 months of 3-5x/ week speech therapy, but she started saying words after that point! For all of the first 9 months, it was just building sounds with repetition, repetition, repetition! 

Once Chelsea was 3 and a half, we started transitioning away from PROMPT, because she had a lot of sounds at that point and had outgrown PROMPT. In the video below, you can see Chelsea at about 4, still cueing herself for the "ee" sound at the beginning of the word "Yes"



How is PROMPT different than other speech therapy?
PROMPT mainly relies on touch cues, which is different than the visual cues more commonly found in speech therapy. The speech therapist (SLP) will touch your child's mouth in different spots to try and "wake up" those muscles and help the child's brain remember which muscles to use for which sounds. 
Disclaimer: Not my picture


How do I find a trained SLP?
There are trained PROMPT SLPs all over the world! Go to their SLP Finder link HERE to find it. 

Sometimes, it is hard to find a trained SLP in your area! When I was in that situation, I contacted the PROMPT Institute, and set up a training in my area. The early intervention center hosted it for free, and I passed the word around to several SLPs, and Chelsea's therapist got training for free in return for me setting it up!
Disclaimer: Not my picture


What does PROMPT look like in therapy?
HERE is a link to a youtube video that shows what PROMPT looks like in a typical speech therapy session. The therapist will touch different parts of the mouth to cue the proper sounds. Chelsea started with the bilabial sounds (meaning "both lips")  like "muh" and "buh" and "puh" where the lips come together and open again. 

Disclaimer: Not my picture

Where can I find more information about this?
The PROMPT Institute website has some fantastic information all about PROMPT, for clinicians and families alike. Go check out their website if you want to learn more and see if this is a method that would help your child.  

Thursday, March 15, 2018

Motivators

Being a parent, but a special needs parent in particular, means that you have to convince/ persuade/ bribe your children in order to get anything done in a timely manner. 


With Chelsea, there are several things that she HATES to do:
  1. Take her vitamins
  2. Help clean
  3. Practice her speech
I have had to find creative ways of getting Chelsea to do what I need her to. For example, with her vitamins, Chelsea has several vitamins/ medications that she needs daily or twice daily. Hiding them in food does not work. Ever. She ALWAYS finds it. So, I developed other methods that work about 80-90% of the time:


  • Let her choose a princess dolly to hold the vitamin and put it in her mouth
  • Start a short video (usually Super Why, Signing Time, or Max and Ruby), then pause after 1-2 minutes and say "Oh, I forgot! First vitamins, then video!" She is so transfixed on the video that she will eat anything
  • Have a princess dress/ crown/ shoes, and tell her that once she eats the vitamin, she will change into a princess. Then take her to the mirror to admire herself
  • Make everyone take one. Like multi-vitamins at breakfast, we take turns- brother takes one, Mommy takes one, then it is Chelsea's turn. If she is grumpy, I will let her feed me mine, then I get to give her one.
  • Reverse psychology! I love that this still works on her. I will say, "Whatever you do, DO NOT eat this! It is really ______" and make up something that she loves. She will start giggling and eat it

With cleaning, I have rules that she has to make her bed in the morning (mostly she arranges her stuffed animals and tries to spread her blanket. It is a work in progress), and help with "power hour" around dinner time. She is also in charge of helping tidy up the room she shares with her brother before she goes to bed. 

  • Work it into a routine! She has a great morning routine that she puts happy faces up on a chart for each time she completes a task.
  • Use a first/ then chart. We had to teach her how to use this, and start small. But now she is at the point where she knows if she competes X, she gets Y
  • Practice counting. I will tell her that after she picks up 10 things, I will pick up ten. She will sulk and pout, but loves completing her turn and telling me which items to pick up and put away
  • Make her dolly "clean up", where she makes the dolly pick up each item and put it away. I use hand over hand with her, and she likes being "in charge" of making her dolly work
  • Pretend. We pretend to be Cinderella cleaning up, or pirates swabbing the deck, etc.
  • Put on music she likes, and turn it off when she stops cleaning

Practicing speech is a big deal! She has plateaued lately, since she has been focusing on learning to read, but we still do our practice diligently. If nothing else, she will know that we expect her to talk, even if she isn't progressing right now. Some ways to make her work:
  • Do pivot phrase play-based therapy!. Nancy Kaufman was a pro at this, like "Go ni-night, Elsa" and put Elsa in bed, then "Go ni-night Minnie Mouse", multiply by 15! Choose a pivot phrase you want your child to work on "I want" or "More ___ please"
  • Play dumb. When Chelsea isn't speaking as well as she can, I act like I have no idea what she wants, and say "What? Say it again, please!" until she gets it right. She gets frustrated by my "incompetence", but will say her words over and over, because she knows I won't give her what she wants until she does.
  • Have her be the teacher. Just like with making her dolly clean, Chelsea likes being in charge and feeling powerful. Have her teach me to say a word over and over. She thinks it is HILARIOUS when I get it wrong, but I have to be careful not to make it too silly, or I can't recover her to work. 





Thursday, March 8, 2018

I Know How You Feel

One of the things that just about EVERY special needs parent has heard from well-meaning people is "I know how you feel." I am sure that they say this to try and sympathize with what we are facing, because it is very, very difficult some days. BUT, it is really, really annoying to hear. Because most people have no idea how we feel. 



YOU don't know
Let me give a few examples from those who do NOT know how a special needs parent feels:

1. My cousin has Autism, so I know how you feel

2. I have kids with disabilities that go to my school/ church.

3. I rode a bus with a special needs kid one year. I know how you feel (Real example, yall)

4. I watched a show about that disability! I know all about it now.

5. Oh, your child has seizures? I read this article one time, and I think they would be healed if you _______.




Now, most people are wise enough to know that these examples do not give a person any amount of credibility. For those who are uncertain still, let me tell you how these came across to me. 



1. "My cousin has Autism, I know how you feel." Okay, so you have probably seen the meltdowns and get a little part of that. But have you worried about how to pay for their care because they will never be able to live on their own? How about changing their diaper when they are 18? Have you laid awake night after night scared that they could be abused and won't be able to tell you? 



2 and 3. "Kids with disabilities go to my school/ church." and "I rode a bus with a special needs kid." Well, good for you. That still does not mean anything. I have seen people in wheelchairs, but I don't have any idea on how difficult it is to navigate public places without the use of my legs. No idea at all.



4 and 5. "I saw a show/ read an article about seizures, so I know." Well, thank heavens I have you with your internet degree of advanced knowledge!!! I don't know what I would do without you. Really, thanks for that 5 minutes of googling my kid's symptoms. Surely, I have never spent countless hours on countless nights, desperately searching the internet for information about my child's 10 sub-diagnoses.