Saturday, November 11, 2017

Real Science vs. Junk Science

With parenting in general, but special needs parenting especially, you get a LOT of unsolicited advice. 

One of my biggest pet peeves is when people site junk science as a credible source. 


Let's Compare!! 
Real science is very, very boring to read. It uses a lot of jargon and is confusing to understand. Junk science is chock full of catching phrases like "Leaked video reveals ____" or "Shocking Secrets of _____". It is very easy to read and understand. Most people are much more likely to read junk science. It is all over the internet.  


Real Science will be articles with titles like "Satb2 haploinsufficiency phenocopies 2q32-q33 deletions, whereas loss suggests a fundamental role in the coordination of jaw development" Junk Science would be an article that says "Child Born With No Mouth, SATB2 Gene Guilty!" 


Google and Wikipedia, though surely great founts of knowledge, DO NOT count as credible sources. A real scientific article will have a huge long list citing the sources that sound just as boring as the title of the article you just read. Junk science will list few, if any, actual sources.

Remember: .com sites are not as believable as .edu or .gov or .org.



How many authors does your article have? If there is one person that wrote it, more likely to be junk science (not always, but often!). If there is a long list of authors, more likely to be real science. 
Real science! Amazing!!!


Real science will not have exciting or jaw-dropping pictures. Maybe some black and white photos comparing the thumbs of the test subjects, or a chart of results of bone density scans. Junk science will have flashy, colored pictures of horrific medical anomalies, or a heart-breaking, stock photo of a mother crying. BIG difference.


In real science, there aren't many ads at all. Maybe one computer-related ad on the side of the screen. If you are getting pop-ups, or have to click 21 times to read the whole article, or see links to other junk science articles like "12 Ways Corn is Killing you" probably junk science! If you fall asleep twice reading the tiny text in the 42 pages, much more likely to be real science! 


So, when you tell me about a "cure" for my child you found on the internet after 10 minutes of punching catchy phrases into google, I'm not likely to take you seriously. I will be as polite as I can be, but when I see this "article" with links to "Leaked Photos of Boy Living in Cave for 3 Years"... Yeah, much less likely to change my beliefs. 



Monday, November 6, 2017

Teaching Reading to SATB2 Kids

I am a HUGE believer in teaching every child to read. With a basic reading and writing level, the ability to care for oneself skyrockets! 

You are then able to make a grocery list, follow a recipe, follow a basic map, complete a to-do list (think job skills!), have enjoyment from a mentally stimulating activity... I could go on for forever!



When we consulted with the first genetic counselor, they told me that with a child whose IQ is 41, she would never be able to read. That maybe she could learn letters if I worked diligently, but to never get my hopes up. 

Being the competitive person I am, I told them that I accepted the challenge! I know Chelsea is not incapable of learning. She just needs different methods and a little more repetition! 

I checked out books on teaching children with learning disabilities to read, and this one was by far my favorite (see below). It was dated, and geared for children with Down Syndrome, but had all the information I needed, and it WORKED!!! Titled "Teaching Reading to Children with Down Syndrome; A Guide for Parents and Teachers"

In the book, it says to focus on memorizing sight words that have meaning for your child. The basic words that they teach as sight words in kindergarten have no meaning whatsoever to Chelsea! As, if, but, or- why would she bother learning those words?

Backing up quickly- when I decided to take it upon myself to teach Chelsea to read, she was 5  and a half years old, knew her letters, and the school had written home to say she was unable to learn any words. 

So after reading that book, I wrote out a bunch of Disney princess names, and when Chelsea came home, I showed her that each princess had her own name card. Within 2-3 repetitions, Chelsea was able to identify ALL the names independently!!! 


Within a week of using this method, Chelsea was able to jump to 20 words that she knew on sight, including family names! Even kids with low IQ scores CAN learn to read!!! 

Thursday, October 19, 2017

How to Ask About a Disability

It seems that in this age of everyone being offended, people are scared to ask questions about things we aren't familiar with. I have been anxious to ask when I don't want to offend someone, and I see it with people wanting to ask about Chelsea but don't.


Now to preface, some people are more open, and some more private. This is just what I prefer when people ask about Chelsea:

WHAT TO ASK:


1. Do you mind if I ask about your daughter? I was curious about her speech delay.

2. I noticed your daughter is signing! I took some ASL in high school, and love it! Is she deaf?

3. Wow, she has the most amazing smile! How did she lose her teeth?


Basically, remember to use manners! Start with something nice, and then ask politely. Most parents I have met are TOTALLY okay with talking about their child's disability. It can be a big release for us to do so.

WHAT NOT TO ASK/ SAY:


1. What is wrong with your kid??

2. I see that your daughter has some problems. Is it because you _____? (don't talk to her/ let her watch too much TV/ vaccinated/ don't read to her/ injured her as a baby)

3. Oh, my cousin had that, but then they ____ and are cured now (used essential oils/ ate all organic/ prayed with faith)


So here, just have basic manners, and don't blame the parents! If you don't want me criticizing you as a parent, please extend the same courtesy to me. We all are doing our best.


Monday, October 16, 2017

Why I Love Life Skills

Life skills has a bad reputation. For some programs, it is well-earned, and stinks. But other programs really do a great job, and deserve praise for what they do! Here are some reasons I LOVE life skills:


1. They tailor a program just for Chelsea
I asked for a special reading program for Chelsea, and boom, done. They took the training I gave them, trained the staff working with her, and sent some all of the work that I planned on making myself, all printed, cut out, laminated and fantastic!
I know it says Down Syndrome, but this program was awesome for Chelsea!


2. She gets lots of 1:1 help
With 8 kids and 3 full-time teachers/ aides, plus 2 kids usually gone at a time to OT/ speech/ mainstream integration, how could we get better ratios? Oh right, when Chelsea goes with a 1:1 aide to mainstream! And lots of help is just what she needs to be successful!


3. They go at Chelsea's pace
I was so scared about this at first! I was positive that if she went into life skills, she would be held back because of the slow pace. But really, Chelsea NEEDS a slower pace! When her kindergarten classmates were diagramming sentences (seriously), she was just trying to master her first 10 reading words. In mainstream, she was lost and going nowhere.


4. Her teachers LOVE what they do
Do YOUR child's teachers have master's degrees? If someone wants to teach special ed, or speech therapy, or occupational therapy, they need a masters degree. And if someone is willing to drop tens of thousands of dollars on a degree, they must love that work. And I can see it! They are so proud of their kids and the progress they make!


5. They teach real life skills!
I have nothing against kids learning academic trivia- cloud formations, the life history of Christopher Colombus, and the moons of Jupiter. It is important to learn those things for typically developing kids!


However, those things will not affect Chelsea's happiness and self-fulfillment. I want her to know how write her name, read, be able to grocery shop, have a job, and take care of herself. If she can master those basic skills and be happy, then I am happy.


6. The BUS!!!
I love Chelsea's bus! It comes right up to our door, picks her up (just her and 2 other kids on the bus with a driver and an aide), and drops her right off to her teacher. Door to door service. I was SO anxious to send her on the bus, but she loves it, she is safe, and if saves me more than an hour each day from driving there and back!


Remember: It is NOT an embarrassment to have your child in a life skills program! Some kids do well in mainstream. Great! Some kids needs more help. Great!

Some kids are little smarty pants who start chess clubs and ace all tests with no help. Great! The world needs all kinds of people, and just because your child learns differently doesn't make it a bad thing!


Wednesday, September 20, 2017

SATB2 1st Grade Schedule


Chelsea is in 1st grade now! Such a big girl!!! One thing I always wondered, but was never able to find out, was what kind of schedules other kids had, when they were diagnosed with a disability similar to Chelsea's. So, still not knowing many others, but being happy with what Chelsea gets, here is what she does during the day:
I swiped this picture from google.


8:00-8:55          General Ed inclusion (academic) with 1:1
8:55-10:15         Special Ed class, independent work
10:15-10:45       1:1 Time with special ed teacher
10:45-11:00       Sensory Break
11:00-11:40       Fine Motor/ OT work
11:40-12:45       Lunch and recess with gen. ed. class
12:45-1:45         Small Group activities/ speech therapy
1:45-2:00           Reset work/ clean desk
2:00-2:30           Bathroom and snack break
2:30-3:25           Specials with 1:1 in general ed class
3:25-3:40           Pack up, potty, go home

Now to break it down a little more:


Speech Therapy
Chelsea receives about 2 hours of speech therapy/ week. Mostly 1:1, a little of group. In the last state we lived, group speech therapy was HORRIBLE, so I resisted it with every fiber of my being when we moved to Texas. But here, I actually really like it! So she does some of that in addition to her 1:1 with the SLP.


General Education Inclusion
This is something I really pushed for with Chelsea, for several reasons. 1) I want her to interact with typically functioning peers. 2) Typical kids who grow up familiar with kids with disabilities will be more accepting as they age. 3) It challenges Chelsea in a different way than in her special ed classroom


Special Education Classroom
Here, I am a firm believer in that the teacher you get determines your child's success. Chelsea has had 1 awful special ed teacher and didn't make ANY progress that year. She also had 3 phenomenal teachers that really got her to excel. The teacher she has now is by far my favorite. This incredible woman has taught her so much and shows all her kids unconditional love while maintaining extremely high expectations.

Independent Work
Again, this was something that I was against at first. 'How dare they put my child in a corner and not be right there teaching her?' I thought when we first moved here. BUT- it has been SO GOOD for Chelsea! She has plenty of time to learn new concepts, and independent work is time when she completes pages/ projects that she feels successful at, and doing so is teaching her skills that she will need later in life in a job.



Lunch and Snack Time
Have I mentioned how much I love Chelsea's special ed teacher? She is so good at making sure kids develop skills for a successful life, and meals are a big part of that! She expects kids to open their lunches, eat, and clean up after themselves, all by themselves! I have noticed Chelsea getting tidier at home, and more helpful with meal clean-up.


Specials
What they call music, theatre, library, gym, etc. I like that Chelsea has a 1:1- the aides are very helpful when needed, and know when to let Chelsea figure it out by herself.


Monday, August 14, 2017

SATB2 Clinic Visit


During our SATB2 conference in Little Rock, Arkansas 2 weeks ago, we had the privilege of participating in the first ever SATB2 clinic! Dr. Z (the geneticist that is heading up the SATB2 research) organized it for the families who would be attending.


After filling out some paperwork, we were taken back to a room where different teams/ doctors/ specialists would come see Chelsea. We had an early 8 am appointment, so we didn't have to wait a long time.


The first person to show up was actually the program coordinator, and she briefly explained how the clinic would work, and who we would be seeing. She also said that we could get bloodwork and dental x-rays done that day too, if we wanted.



Chelsea played a few games while we waited for the first team of doctors to show up- family name matching and drawing.


The ENT team was very nice- looked at Chelsea's ears, nose, and throat, and asked some questions for research, but I felt like we weren't very helpful. Chelsea has been super lucky, and never had an ear infection in her life, no breathing difficulty, nothing. So they checked her out, said that everything looked good, and left after maybe 5-10 minutes.


We had to wait a little longer for the speech pathologist. Fortunately, we had a big backpack full of games, and Chelsea was happy.



The speech pathologist and Chelsea got along very well, and this was the longest appointment we had. The SLP let Chelsea look in her mouth before trading "jobs" and looking into Chelsea's mouth. SATB2 kids usually have a cleft or high palate; Chelsea's is high. She used to stash food there for ages. Gross!


After checking out her mouth, she got out some flipcharts and had Chelsea identify objects, starting with nouns and colors, then moving up to verbs and more complex words like "find 'around'". But Chelsea worked hard and did her best!

We discussed what we have done for speech therapy (PROMPT, oral-motor, K-SLP apraxia, frequency, length of sessions, PECs, visual cues, ASL...)


We had about a 30 minute wait after that appointment, which was plenty of time to take Chelsea potty and feed her some snacks. She loved pretending to be a princess on her "throne".


Naturally just after eating her snacks, then dental team came in. They were very nice about ignoring the food I am sure was still on her teeth, and looked at everything, noting about her two front teeth that got knocked out last year, asking about x-rays, etc.


The lady on this team was especially good with Chelsea! She pulled out a little mirror and told her it was Snow White's magic mirror, and Chelsea was super compliant after that, because here was a doctor that knew about princesses!


We got x-rays done, which I had never attempted with Chelsea awake before! The only other time we had x-rays done was when she had her 2 teeth extracted under sedation, and the x-rays we got this time were much better!
I was surprised at how well-behaved Chelsea was for this! She was standing stock still on tons of paper, her teeth clamped around part of the machine (I don't know the name), and staring at me, as if asking "What on earth am I doing this for, Mom?"


The marketing team came in to ask some questions about how the clinic was going, what it meant to be with so many other SATB2 families, and how we liked the hospital. I told them how impressed I was at the level of care Chelsea was receiving, and how hard Dr. Z worked to coordinate everything.

Finally, it was time to see Dr. Z! He looked at Chelsea's hands, feet, and back (she freaked out that we had to unzip her princess dress for about 10 seconds), and asked about Chelsea's history- if she drooled excessively, when it stopped, her seizures, osteopenia, etc.  He asked if we had any questions, but I knew he was giving a presentation the next day about SATB2, so I said that no, I was sure they would all be answered the next day.

The very last thing we did was get blood work done to check Chelsea's vitamin levels, but no pictures of that, because at this point, Chelsea lost it. They brought out the needle, and it took me and 2 nurses to hold her down, plus another to draw the blood.

Chelsea gets STRONG when she wants to! I never thought that a 38 pound little girl would be able to hold her own against 3 adults, but she can! Whew! These pictures were from earlier in the day; she was very upset at this point, and as we left, she turned and yelled at the nurse who drew the blood "You MEAN!!!!"


She settled down after some lunch and rest, but she reminds me all the time how tough she can be: