Tuesday, February 23, 2016

Early Reading Games Part 1

Flyswatter Game!!!

This one is one of my kids’ all time favorite games!!! They get to run, and I get to sit, so I love it too! Super easy- just stick up letters all over the walls. Tape them up written on paper, foam letters taped up, whatever you like. Then give each child a clean flyswatter and they have to swat each letter you call out.

To make it harder, call “Hit the letter that makes the ___ sound” or “Hit the letter that starts in hippo” or similar. You could also do shapes, sight words, colors… Very adaptable game!

What makes the ___ sound?

There are tons of variation for this. It is a great game for the car, or while on walks.  If you are walking by a tree, say “There is a willow t-t-tree! What letter makes the tih sound?” or “How many things can we think of that start with R? R sounds like rrrr. Let’s start with rhinoceros!” Then do “Look, I found an S on this Stop sign! What sounds does S make?”


This one is just because I am lazy and want to feel better about sticking my kids in front of the TV while I make dinner. I always turn on the subtitles for movies for a little extra literary exposure. Every now and then if we get fancy I have them call out when they see a letter from their name in the subtitles.


I’m not insulting your intelligence here! Everyone knows that we are supposed to read to our kiddos 20-30 minutes every day. When you read, I am sure you stop every now and then and ask “Who can find the letter ___?” or “Who can find the word Baby?” or “Who can guess what this page is about?”

I also make books for my kids about themselves. They love seeing themselves as the heroes in the books, and even if it is “Chelsea Gets a Brother” or “Ryan Learns to Use the Potty”. I will bold some words and put them in red, which draws the kids’ attention right away. I use this to have the kids learn new sight words, and especially if they help write the book or suggest words they want to learn, it is really motivating for them.

Clues Sight Words

Once my kiddos can recognize a few sight words, I will put down some flash cards and give clues to help them identify what word I am talking about. I really like this game because it makes them mentally sort through what the word is based on the clues, and which sight word matches the word they are thinking of.  (I recently posted a video of Ryan doing this on my facebook page)
 Endless Alphabet (Or Reader) Apps

Okay, here is another idea for when I am lazy or sick or whatever. I love, love, love this app! It has the outline of each letter, and when the child drags the letter over to the outline, the letter makes it’s sound. When placed in, the says the name of the letter, then when all letters are filled in, it says the name of the word and defines it. The reader app takes it one step further and has the child fill words into a sentence. Then there are cute short videos after you finish a word/ sentence about little monsters who act out a scenario with that/ those word(s).


 Sensory Bin Sight Words

Hide sight words written on cardstock in your sensory bin! This one is fun because it involves sensory exploration and sight word reading. I have also attached the words underneath puzzle pieces in the bin, so the child fishes out the puzzle piece, reads the word, and places the puzzle piece in it’s correct place.

Friday, February 19, 2016

Preschool Day Red Riding Hood

This was a really fun day for the kids! My little guy is super into anything that involves a wolf, and Chelsea likes baking cookies any day                                                                      

·        Stories- Different versions of Red Riding Hood. Our favorite is the James Marshall version. We love those illustrations and counting all the kitties everywhere!

·        Songs- “Over the River And Through the Woods”

·        Letters- Put some “cookies” in a basket with sight words on them. The kids pick out a cookie to feed Grandma, tell her the word, and she gobbles it up

·        Numbers and Colors- Bake cookies (M&M) and have kids sort colors of candies into categories. See how many blues/ red/ yellow/ etc. (There is a cute M&M counting book we have used). Which has more? Less? Most? Least? Count how many cookies we can bake, and practice simple subtraction- if we have 10 cookies, and give Grandma 6, how many do we have left?

·        Gross Motor- Freeze Dance! Put on some music and pretend to be RRH running, skipping, and dancing through the forest, then freeze when the music stops (wolf comes). Or else (if you have access to a beam) have the kids walk on the beam in a variety of ways (tiptoes, heel walks, kicks, backwards, bunny hops) like Red Riding Hood crossing the bridge over the river to Grandma's house

·        Snack- Share a snack with grandma! Have cookies, milk, little sandwiches

·        Science- Do animals really talk? Would a grandma and little girl really fit into a wolf? Could a wolf really swallow them whole? (Reality vs. Fantasy)

·        Sensory- Pretend to be the wolf and hide behind the tree. How does a tree feel? How does grass feel? How about the bed clothes?
·        Art- Design a red cape for a dolly! Cut fabric, decorate with markers, tie onto a dolly so she can be Red Riding Hood

·        OT activity- Red Riding Hood block puzzle! Scatter the pieces all around the floor, and have kids belly down on a scooter pull themselves around to get a piece, then work on rotating wrist fully to put puzzle pieces into place
·        Interactive Game- Act out Red Riding Hood. Switch up the parts, use props, costumes, etc.

·        Vocabulary- Watch ASL Red Riding Hood Sign Me a Story and review the signs, words, and meanings- in ASL and English 
  • Receptive Language- Sequence the story with pictures! (Red Riding Hood goes into woods, meets wolf, Wolf eats Grandma and RRH, Hunter kills Wolf, Grandma and RRH are safe and share a snack)

  • Outing- If you have one near, really bring your Grandma cookies! Wear a red coat and tell her that you are Red Riding Hood bring her cookies (c'mon, what Grandma wouldn't love this???) Or for the overachievers, take your kiddo to see "Into the Woods Jr." It has Red Riding Hood in it, among many other fairy tale characters, and is cute.

Friday, February 12, 2016

Good Things to Say!

Before, I posted about dumb comments I have gotten, and things not to say to special needs moms. I'm sure people wonder in this day and age if there is anything you can say without being offensive, and the answer is a big YES!!! I love questions about my daughter!

Some examples:

1. "I noticed that your daughter has the most beautiful smile. May I ask about ______?" Questions are always received better with a compliment up front! We love our kids! Or just a compliment to our child! It doesn't have to be about her disability. Chelsea lights up for an hour after people tell her she looks like a specific princess.

2. Ask "How is Chelsea doing?" and then listen to the answer, even if you don't understand when I talk about how at the IEP, the SLP, OT, and LEA rep were discussing her PLAFP... Just listen.

3. If you don't understand something, just ask! "Could you explain about ______? You mentioned it the other day, and I don't know what that is"

4. This one is my favorite: "I don't know how you feel, but I am here for you." You don't have to have the same experiences as I do to be my friend. I need to talk about my struggles, and having a non-judgmental friend to listen is the best thing I could ask for.

5. "Could I watch your kids sometime while you have a break or go on a date night?" I remember my aunt volunteering to watch my kids for as long as needed while my husband and I celebrated our anniversary, and I cried with relief- we hadn't been out in months. Offers of help are the best! Asking "Can I help with anything?" kicks into gear our mentality of feeling like we should be able to do everything and we will say no.

6. Invite my kid for a playdate! She isn't contagious, and is lots of fun, and wants friends so badly! She wants to be invited to people's houses to play just like any other kid!

7. Overload me with information after you watched my non-verbal child!!!! Tell me what she ate, drank, played with, if she needed a diaper change, what her favorite part was, any struggles she might have had... And if you text me pictures of them having fun, my soul will be at peace. She can't tell me much, and that terrifies me. I want to know she is safe and having fun!

8. Talk to Chelsea like she understands you, because she does. She likes ice cream and Minnie Mouse and swimming just like any other little girl. She loves when people talk to her and give her attention.

9. "I know it must be very challenging, but you must be very proud of Chelsea." I AM!!!!!

10. Teach your child about how to play with a child with a disability and be accepting

Do NOT Say This

1. Please remove the word "retarded" (hereafter called The R Word) from your vocabulary, at least around me and my child. For someone whose child is actually diagnosed as intellectually impaired (the current label), it is completely and utterly crushing to hear that word tossed around, to hear people make fun of others for doing foolish things, as if to be associated with anyone like my daughter is horrible.

2. "I'm sure she will grow out of it" Really? My child will grow out of the genetic syndrome? I know this one is meant well, and people want my child to be successful and for me to feel better. The thing is, I already consider her a success for who she is right now, and having a child with special needs means that I have some downs. If I am sharing something about my child with you, I most likely need a friend to listen, not a Band-Aid answer.

3. "Is it because you vaccinated/ didn't vaccinate her?" I know this is a touchy subject for a lot of people, but I have gotten this so many times from strangers! They automatically assume that my child has issues because we got he vaccinated. And there are other moms who get looked down on because they don't vaccinate their children. I mean, good grief people! Stop the mom bashing already! We are all doing our best!

4. "Have you tried ________?" Darling, unless you have a PhD and invested every single spare hour you have for my child's entire lifetime on researching and studying, I probably already know all about what you are telling me about. If you are a professional and familiar with my child and the interventions we are doing, bring on the advice! But I get advice like, "You should talk to her more" or "Have you tried singing to her?" What do you think I do, lock her in a closet??? It is insulting to suggest that I don't read to and talk to my kid, because it feels (not intended, I'm sure) that you think it is my fault that my kid is the way she is.

5. "You medicate your child??" Again, let's stop the mom bashing, and yes, I do medicate my daughter. I would prefer for her to not have seizures, and no, there is not a diet that will help with this.


6. God only gives you what you can handle!" This one I actually don't mind hearing because I know people mean it with the best of intentions, but let me explain my beliefs here. I think God gives everyone more than we can presently handle. Constantly! How else would we grow and become better? You wouldn’t give up teaching a first grader how to read because they couldn’t right then, you keep teaching and testing, and they will cry, and say that they don’t get it, that it is hard, they don’t want to, but you keep at it, and eventually they get it. God is the greatest teacher of all, and he knows what will scope us into better people. I really, really try to remember that, because this is FOR SURE the hardest thing I have ever done.

7. "I know how you feel" If someone says this who doesn't have a kid with special needs, I get annoyed. My instant thought is "No! You have no idea whatsoever how I feel!" I wouldn't ever tell a mom whose child has cancer that I know how she feels, because I don't! Not in the slightest! At the same time, I love love LOVE hearing "I know how you feel" from someone who actually does know. That makes me feel far less alone.

8. "Oh, it's not too bad!" Bet me. Yes, some days are great! Other days they are not. Please don't assume that by seeing me on a good day means that all my days are good.

Please don't think you shouldn't talk to me! I also wrote a different blog about great things to say to special needs moms! We love sincere questions about our children!!! Please don't feel scared to talk to us!

Wednesday, February 10, 2016

Dumb Comments

To preface: I honestly believe that people are inherently good, and I love, love, love people. I am a natural extrovert and thoroughly enjoy being in the company of others, and love when people sincerely ask questions. But sometimes, people say things without thinking, or are trying to be nice but it rubs a special needs mom wrong, or they are just flat rude. Here are some of those eyebrow-raising moments I have had while raising my sweet daughter. And tell me some of your stories!

1. "If you take out her tonsils, all her speech problems will be gone."

2. This one made me laugh until I cried: When Little Miss was in early intervention, we had people coming in and out of our house constantly- speech therapists, nurses, occupational therapists, physical therapists, developmental specialists... The list goes on and on. One day, a neighbor asked (totally seriously) if we were 'like, drug dealers or something'.

3. When Chelsea was learning to walk, she used a little metal walker, and one of the highlights of her day was watching the neighborhood kids walk to school. So one morning I was outside with Chelsea, and a mom walking by asked, "If you knew your daughter was going to be so handicapped, would you have kept her?" If I had been quicker on my feet, I may have responded, "If your mother knew you were so stupid, would she have kept you?" But I was too shocked to respond

4. "Wow, you are SO LUCKY because you get free preschool!" I know, right??? Free preschool and tens of thousands of dollars of therapy! Get in line, quick!!!!

5. When I was walking out of a building after seeing a pediatric neuropsychologist, I had a person ask who I was seeing. When they heard who I had been visiting with, she said, "You know, I am so jealous! All these special needs moms don't really have to do much. Your kids' therapists do all the work!"

6. "You know, you really should try (something obvious that I have been doing for years)" says a person with no experience what-so-ever in special needs

7. I took my Chelsea into the pediatrician for her 4 year checkup. I had been sending him monthly reports for 3 years on her diagnoses, therapies, interventions, etc. After going through the questions of where Chelsea was developmentally (she didn't hit a single target), the doctor said, "Well, Chelsea seems to be falling behind her peers. Have you ever considered doing early intervention or doing speech therapy?"

Other Comments:

  • "Child's Name is too smart to talk" Cuz screaming is so much more effective, ya know
  • "Look at all that money that Mom is spending on therapy. That is just overpaid babysitting"
  • "You know, if you just let him be a kid then he'd develop just fine. I think you're causing his issues by making him do all of this therapy. Just leave him alone."
  • "I don't think your kids have any problems. I think you're just projecting your fears onto them and causing their problems."
  • As a special needs child is sobbing in the backseat, yelling "HOW CAN YOU STAND IT??"

Wednesday, February 3, 2016

Silent Seizures

First of all, I am no doctor; I am a mom who busts my butt digging information out of people and the internet. Chelsea has a complex partial seizure disorder (more on that later). While I was talking to Chelsea’s neurologist and geneticist, both expressed the opinion that frequently, these types of seizures will go undiagnosed. That is so scary! The word “seizure” is scary, but I would rather be scared than have my kid continue to have seizures. So today’s blog will be:

1.       How do we diagnose a seizure disorder?
2.       What does a complex partial seizure look like?
3.       How do we treat it?

How do we diagnose a seizure disorder?

Short Answer:
1.       Ask teachers/ therapists if they see any warning signs
2.       Call pediatrician to recommend testing
3.       Call hospital to schedule test
4.       Child does EEG
5.       Neurologist visit to explain results

Long Answer/ Our Experience:

Ask your kiddo’s teachers and therapists if they have noticed any kind of seizure behavior- not necessarily shaking, but staring, “zoning out” or something similar. If you suspect that your child is having a seizure of any kind, call your doctor right away! Have the pediatrician call the hospital to set up an EEG for suspected abnormal brain activity. At least from my experience, my pediatrician does exactly what I ask, signs the forms I bring in, etc. YOU the mom know your child WAY better than the doctor and do WAY more research on your child’s disabilities.

Once the doctor calls in the order, you will probably need to call the hospital (or wherever the EEG will be taking place) and schedule. Now pull out that advocate hat and jam it onto your head! When I called in October, they said they could fit her in around January. I nicely but firmly said no, that wouldn’t work, and it needed to be sooner. They again said that the only openings available were in January, and that was what they had to offer. I expressed my concern that my daughter could be having seizures, and wanted this taken care of like, this week or next. After a few more rounds, they said that they did have an opening in two days, so would I like to take it. I think that maybe hospitals keep a couple spots open for psycho parents, and I’m happy to be that parent if it helps my daughter.

To prep for an EEG, we had to do sleep deprivation with Chelsea the night before. Her EEG was scheduled in the mid-morning, so we kept her awake until 11:30 the night before (just after a Halloween party- she was elated), then woke her up at 4:30. She usually sleeps about 11 hours each night, so she was tired! The hardest part was keeping her awake on the way to the hospital, but we managed. We took her back and a truly amazing nurse hooked her up to a bunch of wires and stuff (did I mention I am not a doctor?) while Chelsea royally freaked out. Once she was hooked up, they flashed lights of different frequencies at her, then dimmed all the lights, and she went right to sleep.

My husband and I were watching the monitor while she slept (it was just a 15-30 minute test), and I had no idea what a normal EEG was supposed to look like, but it wasn’t what was on the screen! Her brain wave activity was constantly all over. After the test was over, they said that they would send her results to the pediatrician and also to schedule with a neurologist to explain the results to me.

I called the pediatrician’s office every couple hours for the next day and a half, asking if they had the results yet. Finally they came in and said that they could only read the report to me, not interpret it. They sure enough read it to me, and not a single word made sense. Maybe “Chelsea” or “and”. So that afternoon, I drove down to the office, picked up a copy, and stayed up all night trying to figure it out.

Same old story the next day. I called to schedule with the neurologist to get the results interpreted by someone other than google, and said that there weren’t any availabilities until 2 months from then. So I kept them on the phone, saying again and again that my kid had abnormal results and I needed to talk to someone NOW. Turns out they had an availability at the end of the week. Wonderful. Note: ALWAYS advocate!!!!

We met with the neurologist, who was very nice and able to prescribe a medication to stop the seizures, and explain about seizures.


What does a complex partial seizure look like?
Before starting medication, Chelsea was having seizures 2-3 times every minute while awake, more while she was asleep. Some symptoms were:

·         Falling a lot. Chelsea would frequently run into things or fall, and I had attributed it to her poor muscle coordination and lack of ability to motor plan, but it turns out it was more than that

·         Losing focus. Chelsea would zone out for a second or two, then snap back. Her brain was essentially “rebooting” every 20-30 seconds

·         Being tired! Even until 4 ½, Chelsea was taking 2-3 hour naps every day and still sleeping hard at night. Seizures EXHAUST your brain completely, and the poor girl was all worn out!

·         Running into things. I vividly remember one time while we were at the library that Chelsea wanted to look at a book display set on some metal shelving. She started walking over to it, and kept walking right before she got there with a slightly vacant look on her face. Cue injury, screaming, and ugly looks. Yay!!!


How to we treat it?

Medication. No other answer I could find. The diet that is sometimes recommended for kids who don’t respond well for the medication is a ketone diet (like Atkins), and my Organic Chemistry teacher showed up in college how ketones eat brain tissue and break down your muscles, including your heart. He totally freaked me out about ketone diets, and I refuse to go on one or put my child on one. Plus Chelsea is casein-free (allergies), and the diet is heavy in dairy and other foods she is allergic to.