You Never Know When

Before having Chelsea, I took so many things for granted. People talk about the grief cycle after a loved one dies, but many people don't realize that special needs parents go through the same process.

The stages are: denial, anger, depression, bargaining, and acceptance. With special needs parenting, it isn't a neat circle. Various stages hit at the most unlikely of times, and repeatedly for your whole life!

Depression: One night, my son came to me and said that he had growing pains and would I please rub his legs. I started crying- how many times was Chelsea having growing pains or headaches and was unable to tell me? What if in those times when she was in pain, I was annoyed at her crying? Does she resent me for not understanding?

Denial: A friend told me that they just knew they could get Chelsea to the point where she could maybe do a sheltered workshop job someday, if we just work hard enough for the next 15 years. Boom, denial. My kid can do more than a sheltered workshop! What are they talking about- she will be fine! Why can't they see her the way I do?

Anger: The school says they can only provide an "educational model" of services, so basically nothing of value to Chelsea. Services are expensive, they say. Kids just don't need as much as you are asking for.

I KNOW Chelsea is a high-dollar student! My husband and I spent every extra penny we had from working 3 jobs for therapy for that little girl, live in a crummy apartment, never eat out, never get new clothes, NOTHING because it all goes to helping her!!! And the school refuses help??? No way!!! Next stop is working yet another job to afford an advocate!

And cue Mama Bear mode!

Bargaining: When planning our summer, there is maybe one or two "relax and have fun" days scheduled in. But I'm sure that if I just work hard enough, maybe she will "get better".

So I plan themed days that incorporate speech therapy, occupational therapy, self-help skills, fine motor work, gross motor activities, reading lessons, math tutoring, writing help, plan educational field trips to have fun and do community learning... Then stay up for until 1 am prepping for the next day...

Maybe if I dedicate my whole life to her, she will make incredible progress! (Which she totally will!)

Acceptance: This is the stage I love the most! When I play princess tea party with Chelsea, or snuggle up with some books, or have my heart BURSTING with pride about every accomplishment, I feel pure happiness, which is what I want for Chelsea! Just to feel loved and have a happy life!

K-SLP Basics

Recently, I was fortunate enough to attend a speaking event featuring Nancy Kaufman, the speech therapist known around the world for her work with children diagnosed with severe Apraxia of Speech, and who developed the K-SLP method of treating severe speech delays.

I LOVE this lady! She definitely knows how to treat apraxia, and we attended a speech and occupational therapy boot camp at her center in Michigan in 2015. I blogged about the experience here.

I wasn't allowed to take pictures or videos at the lecture, so will just cover 3 main points from her presentation.

1. Make it FUN and REPETITIVE!!!! This is one thing I loved about Nancy when we visited her in 2015. She had a room packed with toys and games and used them constantly in her sessions. There was almost zero quiet time, and it wasn't Nancy talking, it was high reps from the child!

2. Use PIVOT PHRASES!!! This is the way Nancy would get literally hundreds of words out of Chelsea in a half hour session- by using pivot phrases like "Go down _____" and have elmo, nemo, Minnie mouse, puppy, etc. go down a slide. They would all take turns.

Other pivot phrases might be: "_____ go ni-night" or "I like ______" or "_____ is nice". Keep it simple, and something motivating for the child!

3. Approximations are OKAY!!!! What I learned that is pure gold is teaching a consonant-vowel combo first INSTEAD of the consonant alone. Nancy uses these cards to give ideas for developmentally-appropriate sounds:

Meaning: If a child came to you and said a simple "Buh", you might think they want a ball, bus, book, bed, bottle... No limit of options! BUT if they correctly say "Boo", you would probably (correctly) guess "Book".

So teach "Ca...t" instead of "C...at" like most people think, like pictured here

Get the words out there in high volume, articulation will follow (with LOTS of speech therapy for our kiddos to get there, but it will come!)

More Busy Bags

Since my last blog about busy bags, I've been using them every few days- at church, in the car, or I will stick a couple in my purse for waiting in line. I don't want the kids to get bored, so I made a few MORE busy bags!!!

1. I am so beyond proud of how cute this dinosaur busy box turned out! I put a few dinosaurs in there, the blue is a river, and I LOVE the cute volcano! That is the best part, and the kids usually play "the dinosaurs fall into the volcano and die" Sadistic kids... Plus the felt makes the box really quiet!

2. A lego box! This one is super fun for the car because the box does a great job of keeping all the legos contained, and there aren't too many legos.

3. A fishing game! This one is really fun for a quiet place like church, and the kids LOVE playing with magnets!

4. A portable drawing station! Glue a clothespin or similar to hold the paper, then glue in a box of crayons. I liked the triangular ones because they don't roll away AND work on proper grip!

5. A button snake! This is one I had before, but re-did it with a cute ribbon and ice cream buttons on both ends with some  solid colored felt. So I just made it "prettier", and I love it!

6. Felt Christmas Tree Decorating. I made this one around Christmas, and the kids loved it. I saw a big one on Pinterest, but I'm not that fancy, so I made a little one.

7. Ninjas! I loved this- my mom sent my little guy a ninja book "Hello Ninja" and little ninjas with a "dragon" (Randall from Monsters Inc, but they haven't seen that yet!). So I put the book and ninjas into a bag, and they have ninja battles and ride on the dragon, like in the book.

8. Felt Pizza! I like this one a lot because we like doing Build Your Own Pizza dinners at our house, and this one doesn't run the risk of tomato sauce being splattered on the floor!

9. More Dress-Up Princesses! This was another that I already had in my last blog, but Miss Chelsea got several more for Christmas because she loved the ones she had soooo much and they are AMAZING for keeping her occupied!

10. Rubber Band Geo Board. I have had these for a while, but the kids only just started getting interested in them. They are amazing for fine motor control and teaching shapes!

11. Button Chains. This one is similar to the pom pom button chain in my last blog, but is harder because I use large buttons instead of huge pom poms. I am determined that Miss Chelsea is going to learn to button things for herself someday, and what better way to teach than with fun portable games?!

IEP Horror Stories

First of all, I hope you have a fantastic IEP team. I really do believe that most people in special education are there because they just love those kids and truly want to help.

HOWEVER, sometimes, there are rotten teams. Crummy administrators. Gatekeepers who care only about reducing cost, no matter what the cost to the child's education is.

So, here are some true stories (names changed) of bad IEP experiences:

1. We moved to a new district and bought a house because the elementary school we were zoned for was supposed to be the best for special needs kids. When my son with autism, Jaden, was enrolled, the school tested him and showed that he miraculously was "all better", and didn't need all the services his IEP required, despite meltdowns and him constantly trying to escape. They told me to read the book "How to Raise a Strong Willed Child". After several months of fighting, we pulled him out and homeschooled.

2. At my son's IEP meeting, the principal (who has never met Levi) was on his phone the whole time, kept referring to Levi as "Thomas", then asked if he really had autism, since he is in regular education, so he couldn't be that affected.

3. We had an occupational therapist who really didn't like Teresa. They didn't connect, and I don't think she liked me (the mom) either. To get us off her caseload, she challenged Teresa's diagnosis ataxia cerebral palsy, and had a neurologist look at her. They changed it to hypotonia, and Teresa was removed from the entire program, and lost weekly OT and PT from a medical unit forever because of that wretched woman.

4. Lydia was given a name stamp so she could "write her name" on her papers at school. When I asked the school to make an IEP goal of helping her learn to write her name, they told me it wasn't educationally necessary, and a rubber stamp was an accommodation. It seemed to me that if she can't even write her name, she isn't getting much of an education at all!

5. Calvin is fluent in sign language, but completely non-verbal, and the school refused an interpreting aide, or to provide training for the staff working with him because it would be too expensive. 

Illusions

Just today, I ran across an article about "lifestyle porn", and it made me step back and think. This term refers to people who display a very attractive (but highly unrealistic) life on social media, or their blogs. I had several thoughts on the issue, but particularly related to fitness and body image.

First of all, I'm not talking about a cool tip you found about a new workout to do, or a new veggie wrap that makes you say "Wow, that looks cool, I want to try it." I looooooove getting on pinterest for new ideas, and have a degree in exercise physiology. I love fitness and nutrition! And if what you read is motivating you to be a better person, then by all means, rock on!

HOWEVER, when people look at something and think "I need to be like that- it looks so perfect!", please remember that you don't see what is happening behind the scenes. To illustrate, I have a story!

When I was in high school, I was very fit and thin, and did a little modeling. I worked out 2-4 hours a day, and ate 500-700 Calories a day (everyone say Anorexic!). I remember going to a modeling job, and they had me wear a dress that crushed my already-anorexic waist down to a mere 22 inches, and pushed up my bust a LOT. When I stepped out of the dressing room, the lady in charge called some other models over and told them to try and get a figure like mine, and the other (gorgeous!) models looked ashamed.

I remember thinking in that moment, "Whoa, hold up there! I nearly passed out in the shower this morning because I don't eat enough, and can barely breathe in this dress, and you are telling people to imitate that??" That was the day I threw in the towel for modelling, because that is just ridiculous.

Even now, I have heard women talk about how such-and-such celebrity has a 21 inch waist, and if only they could too. I was curious, so went and measured my daughter Chelsea's waist. It was 20 inches. So then I sat there and scratched my head, thinking, "Why do you want to look like a 35 pound 5 year old??"

I want people to be healthy! But I also want them to realize that those models you see on TV or on the covers of magazines- that isn't "real". I know several models, and went through modeling school. 

Did you know- It usually takes these girls about 6 hours to get ready to go out- 3 hour workout, 1 hour shower with scalp treatment and exfoliation, 1 hour for hair, and another hour for makeup and nails... WAY more than sane people are willing to invest every day- how can you if you have a job other than modeling, or raising small children?

One of the best things I ever heard about confidence in your body was "If you want to know what real women look like, don't look at magazines or movies. Watch your mom, or the lady next door. Those are real women."