Plateauing and Regression

One of the things that almost all special needs parents experience is the frustration that comes with watching your child struggle for months or years to attain a certain skill, only to see that skill plateau or fade away. 

We have experienced this many times with Chelsea, and inevitably, I always wonder if I haven't been doing enough with her, if I am the reason that she isn't making any progress, or if it is because of my actions that she is losing abilities. 

I remember when Chelsea was learning how to walk. She would take a step or two, then not again for weeks. Then after hours and hours of painstaking work, she would take another couple of independent steps. The same process was repeated over and again before the skill FINALLY stuck.

Same thing with speech! At 2 years old, she had a grand total of 2 sounds. Not words. Just a repetitive "da-da-da-da-da" and a high pitched shrieking "Iiieeee" sound. Then came the speech therapy, and the first 6 months were unspeakably hard!

We worked on "mama" for hours every week, at home and in therapy, with me gently pressing her lips together and getting her to breathe out to form the "ma" sound. 

She finally said "mama" independently on Christmas Day, just before she turned 3 years old. Best Christmas gift ever! But then she lost it again, and it was months of more work before it came back. Once it did, other sounds came more readily. 

Now, Chelsea has many more sounds and words than she did at 4 years old, but has plateaued for the last year on speech. She really hasn't gained any new words, and has even lost a few.

I blamed it on myself and listed excuses- with this pregnancy, I have had WAY less energy than before and have been neglecting her "homework" sessions. That her brother is very spirited and demands a great deal of attention.

Seriously my son every day

I also blamed lack of private speech- my husband was out of a job and insurance last year for several months, and we pulled Chelsea from therapy for more than half a year. 

But you know what? I am doing the best I can, and sometimes, we will hit a plateau. But that is okay. We will eventually bounce back, and we will gain other skills in the mean time. 

Many times, Chelsea plateaus in one area of development while she "focuses" on another. This last year, she has regressed in speech, but also gained some significant fine motor skills and reading skills. 

I have to keep reminding myself that it is okay, that progress in other areas will come, and to not get hung up on Chelsea's deficiencies, and instead focus on her achievements. 

I also have to remind myself to not throw in the towel any time we hit a plateau or go through a regression. It is easy for me to start wondering why we are paying thousands of dollars each year when there is no progress seen at all. 

BUT- I believe in Chelsea! I know that even when she is taking a break from learning to say new words, she is working really hard on other things, like learning to jump, or write her name, or accomplish independence through self-help skills. 

Talking About Gifted vs Special Needs

Most of this blog is dedicated to Chelsea, my daughter with SATB2 Associated Syndrome. But very occasionally, I will write about my son. This time, it is a little of both, and why people are allowed to talk about one child's abilities, but not another. 

Chelsea, my SATB2 girl, is doing great. I have dedicated hours upon hours, every day, for years, to teach her to communicate, use the potty, do seat work, even how to make a peanut butter jelly sandwich and read some words! I am very, very proud of her. 

When I tell people about Chelsea, almost always, the response is positive. "Wow, you are such a good mom!" or "Chelsea is so lucky to have you." or "She is doing so well! You must be so proud of her!" When people talk to Chelsea, they tell her how smart and pretty she is. And we love it! It means the world to hear that all of our hard work is worth something.

Then there is my younger son. He is doing great too! I have dedicated as much time as I can to him each day, but because of Chelsea's needs, he doesn't get nearly as much help. But even so, by age 4, he learned to read, write, do math, and can memorize everything and anything with uncanny recall abilities. He is what you would call "academically gifted." I am very, very proud of him!

When I tell people about Ryan, almost always, the response is pretty negative. My observations are downplayed, ignored, or I have eyes rolled at me. "Well, all kids are gifted." or "yeah sure." or "Ryan can't be gifted, since you help him at home." I instantly get labeled as one of 'those moms'. 

I have learned to not be very vocal about Ryan's abilities, since people hate hearing about it. They usually think I am lying or exaggerating.

Being gifted means that Ryan struggles with some things, like controlling his emotions. He has MASSIVE meltdowns. Being highly developed in one area, but not in others, is "asynchronous development". It comes with having his own kinds of needs. Many of those labeled "gifted" or even "genius" are completely oblivious to the simplest of things.  

People don't mind me talking about Ryan's meltdowns. But they don't like hearing about how advanced he is academically, even though it is perfectly acceptable for other parents to talk about how their child is advanced in art, or sports, or music. 

With schools, I advocate fiercely for Chelsea to get an education that is appropriate for her. But when I inquired about the gifted programs offered, I was told that most gifted children are "teacher helpers" and assist other children in the classroom. That is great, but what is RYAN going to learn? 

So, I ask:

Why is it acceptable to praise the parents of a special needs child who dedicate hours each day teaching their child to do new, basic things that the special needs child is not able to do quite yet, but then we roll our eyes and say it is being a tiger mom when a mother teaches her child to do new, advanced things when that child is able to?

Why can a mom whose child excels at baseball talk freely about her child's abilities, but the mom whose child is exceptional mathematically cannot without fear of being ostracized? 

Why is it acceptable (albeit difficult) to fight for services for my special needs child, but I get labeled as an impossible parent when I want an appropriate education to challenge my gifted child, instead of him reviewing concepts until peers catch up?

Introductory Guide to SATB2

When a child is first diagnosed with SATB2 Associated Syndrome, there are a lot of questions that come up, especially if that child is very young. Parents of older kids that are diagnosed still have questions, but have figured out what to do for therapy and IEPs and insurance and everything over the years. 

Also, I'm skipping over all the "Breathe, you are doing fine!" stuff, because I'm not good at that, and one thing I have learned as a special needs parent is to play to my strengths. Which is making lists.

So, your child was just diagnosed with SATB2. Now what?

1. Get your child on a waiting list for social services. Medicaid waivers, etc. You can contact a social worker to help with this. In Texas where I live, it is a 10-13 year wait list to receive ANY services. So get on the lists NOW.

2. I am sure you are already doing therapy, but read up on the apraxia! Many SATB2 kids were diagnosed with Apraxia before receiving the genetic diagnosis. The K-SLP approach to treating apraxia is very popular, and has helped several SATB2 kids. The PROMPT method of speech therapy, a great starting point, and the Padovan method. I haven't tried that last one, but many moms have and say it is fantastic. Not common in the US, but is more so in Europe, from what I have heard.

3. Apply for grants/ find funding for therapy. We have spent tens of thousands of dollars on Chelsea's therapy over the years. Call insurance and max out those benefits! We pay outrageous premiums, so you bet I will be making them pay huge bills every year! 

4. Figure out IEPs. If your child is 0-3 (at least in the US), they should be getting in-home services. Once they turn 3, they will be going to a district special education preschool with an IEP "Individualized Education Program". The best books for that are the Wrightslaw books "All About IEPs" (beginner level), "Emotions to Advocacy" (intermediate), and then they have special ed law books that are awesome once you know what is going on. 

5. Get a team of specialists! Neurologist (Chelsea had non-convulsive seizures I didn't know about until she was 4), geneticist, speech therapist, occupational therapist, neuropsychologist, etc. Dr. Z, the geneticist researching this syndrome, has a great website that has a list of the tests you should have done, therapy recommendations, etc. He has published several articles and hosted our first ever SATB2 conference this year. 

6. Explore different ways of communication. Not all SATB2 kids talk. In fact, very few do. So, do you want to pursue speech therapy? Use sign language? A picture exchange system (PECS)? An iPad with a language program? There are SATB2 kids that use one or several of these. My Chelsea started out with PECS, and now uses a combination of sign language and speech approximations to communicate. Find out what works best for YOUR child.  

7. Don't give up!!! When I first met with the "professionals", they told me to never expect Chelsea to be potty trained, or to speak, or read. I told them challenge accepted (and thought some much less friendly things) and dove in. Chelsea is 6 and a half now, and learning to read, can communicate needs and most wants, and has been potty trained for a year. 

Further Reading: Speech Therapy

What Kind of Speech Therapy Should We Do?
CASANA's Website

K-SLP Method

Meeting Nancy Kaufman: The Lady Who Developed K-SLP

Nancy Kaufman's Website

PROMPT Website

ASL: Start Signing!

Our Journey with ASL and PECS

Further Reading: At Home

Home Speech Practice Ideas

Home OT Practice Ideas

Home PT Practice Ideas

Potty Training a SATB2 Child

Funding Sources for Therapy

Organizing Your Child's Files

Further Reading: School

Starting the School Year Part 1

Starting the School Year Part 2

The BEST Website for Special Ed Questions: Wrightslaw

IEP Acronym Cheat Sheet

Further Reading: Specialists

"Silent Seizures"

Dr. Z's website: This is the OFFICIAL SATB2 site!

Dr. Z study in "Real People" English

Common SATB2 Features

SATB2 Frequently Asked Questions

SATB2 Clinic at 2017 Conference

Teaching Your SATB2 Child to Read:

Preparing to Read

Teaching Reading

Easy Reading Games

Easy Reading Games Part 2

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. 

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!!! 

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.

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!

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.