Special Needs Mom Wishlist

What a special needs mom wants for Christmas:

1. A top-of-the-line laminator/ copier with unlimited paper and ink! Oh the printing, copying, stapling, and laminating- Visual schedules, IEP notes, social stories, medical records... I am giddy just thinking about it!

2. A full-on sensory room. I'm talking platform swings, lycra hammocks, foam pits, rock walls and rope ladders, bins upon bins of sensory equipment, a jungle gym... It would be HEAVEN!!!!

Not even CLOSE to what I imagined!

3. Training for ALL Chelsea's teachers, doctors, and therapists. Tailor her education for just her!

4. Books, books, books, and more books. All the Wrightslaw books, disability books, books on reading programs, OT and speech books, fun games for kid books, fun books to read with Chelsea, early books for her to start reading... Plus a library to fit it in.

5. Advocacy training for me! Plus training on just about every aspect of Chelsea's life! I just love going to conferences and workshops!!! (Can you tell I was a TOTAL nerd through all of school? I have fully embraced my identity!)

6. About a million dollars for Chelsea's therapy. Starting out, we paid about $2,000 per WORD worth of speech therapy. Who can say "OUCH!" like our bank account did? 😉

7. Color-coded binders, tab dividers, highlighters, sheet protectors... I just need a bottomless account at an office supply store! Hahaha, I have to go to different stores because I clean out their whole supply aisle!

8. 100 busy bags! I can't even express how much I love these!!! I want them all cute, engaging and fun for Chelsea, that also encourage skills like buttoning, drawing, cutting...

9. An uninterrupted nap. Just because that would ROCK!!! Any sleep is amazing! I think any parent can relate here! Guys, parenting is really, really tiring!!!

Thanksgiving Gratitude

As a special needs parent, it is easy to complain. But there have also been so many blessings that have been poured out upon our family, and I want to focus on those during this Thanksgiving season.

1. We have made so many wonderful friends! I never would have met these incredible people had we not been in special-needs groups, conferences, etc. They inspire me!

2. Chelsea has opened my eyes to the beauty of each and every accomplishment; every achievement is a mountain to conquer, no matter how seemingly small others find them.

3. Our family has become more accepting. We go out of our way to be kind to those with disabilities. Not because we pity them, but because we know how much they contribute, and how lonely they probably feel.

4. I have learned so much- about disabilities, speech development, fun therapy games, special ed law, how to stand up for what is right, and how to love more completely.

Preparing to Read

Lately, I have been reading the book "Teaching Reading to Children with Down Syndrome". Even though Chelsea doesn't have Down Syndrome, she learns in a similar way, and it has TONS of great ideas!

Here are some tips they gave in preparing your child to become a reader:

1. MODEL reading! Show your child that you read for pleasure as well as to learn new things. Let them see you reading, and take them frequently to the library.

2. Provide reading material! Let age-appropriate books to be easily accessible to your child. (A note from me- be ready for and okay with casualties. This is why I only buy used books- it is easier to say goodbye to a 75 cent book than a new $10 book. Encourage them to look at and experience books!)

3. Read with them! All parents know this one. I read to my kids for at least half an hour a day, and have since Chelsea was born. They LOVE books! They associate them with happy times with mom.

4. Sing nursery songs with them! Recite poems, sing songs- these teach rhyming! It is about lots more than humpty dumpty on a wall!

5. Shape boxes! These are great early toys that teach kids to match shapes and become aware of the importance of the shape something has.

6. Play with puzzles! This also teaches to match shapes (the early, single shape puzzles), discrimination, and to look for the big picture (like a word versus a letter!)

7. Provide a large writing surface the child has unlimited access to. We used a big whiteboard easel, and multi-colored dry erase markers. Also use paper and markers, crayons, colored pencils, paint- anything to promote drawing/ writing!

8. Have blocks, toy animals, cars, little people- use these to build and play zoo, farm, garages, roads- anything to act out what they are reading about

9. Have dolls, stuffed animals, tables, chairs, tea set... Housekeeping play toys. These are for practicing interactions, pretend play, learning the use of objects, and all about family relationships, roles, etc.

10. Dress-up, pots and pans, boxes, sensory bins. Again, more of acting out what they read about, because kids learn by DOING!

11. Watch reading shows! The book recommends Sesame Street, but we like Super Why the best. Just use your screen time for good shows!

12. Experience the community with purpose! Meaning- give your child a goal, so have a list for them when you go to the store (use pictures and words!), do an animal scavenger hunt at the zoo, bring a picture for grandma to the post office to mail it, etc.

13. Make books about your child! (Not in the book I have been reading, but Chelsea loves this) I just use Word and put in pictures about Chelsea, or have her choose her ABC Disney Favorites.

Remember: Your child will learn what you teach them, so make sure you are teaching them things that are meaningful and useful!

Life Skills

Imagine for a moment that you are completely unable to care for yourself. Someone has to dress you every day, change your diaper, make your food, brush your teeth, do your shopping... Wouldn't you be desperate for any amount of independence? This is comes when life skills are taught!!!! I want Chelsea to be able to live as independently as possible, and I will absolutely help her to get to that point!

Here is a list of a few things I am working with Chelsea on so she can learn to be more independent!

1. Personal hygiene! Washing hands correctly and frequently, toileting, bathing herself, and brushing her teeth.

2. Dressing and Undressing. Buttons and zippers are hard! We use various busy bags and a Minnie Mouse skills board to practice, as well as some different buttoning activities. We also have her dress and undress herself as often as possible, and she is getting better!

3. Following directions! I alternate this one a lot- give verbal directions "Spin around, sit down, then go find your shoes", and picture directions in list form, like visual prompts for washing hands, or making a peanut butter jelly sandwich

4. Budgeting! Right now, we keep it very simple; we have a picture list of chores she can do to earn money, then when we go to the store, she can find something she wants, we take a picture, and she can save up. It gives us an awesome way to practice counting and for her to learn to save and make purchases by herself!  

Chelsea at age 3

5. Say her name, address, and phone number. Right now, I have a lanyard she can hand to someone if she is lost, and I just put it on her whenever we leave the house. Luckily, we haven't had to use it in an emergency, but I still try and get her to practice.

6. Making purchases. Chelsea will need to find what she is looking for in the store, bring it to the cashier, make sure she has enough money, and pay for it. And when she is so cute and little, most people and cashiers are very patient with her!

One day I will get this project done for her!

Later on: There are lists and lists on this topic, some that I plan on teaching Chelsea later will be things like managing personal health (cooking, exercise, basic nutrition), pet care, calling 9-1-1, eating out, doing laundry and dishes, using public transportation, doing her hair and makeup, etc. Sooo many things to learn!

SATB2 Study in English

I was so, so, SO excited to see that there is a new SATB2 study, authored by the geneticist that is involved with creating our SATB2 database!!! Here is the link.

And jargon-speak can sometimes be difficult to understand, so here are 7 points made in the study... in plain English:

1. I LOVED the acronym they came up with for SATB2, all about the main characteristics of our cuties!

2. "Glass Syndrome" and "SATB2 Associated Syndrome" are the same thing. Really, no difference. All the kids will present with similar symptoms regardless of size of deletion/ mutation/ duplication/ frameshift

3. They give a recommendation for treatment for SATB2!!!! (See Table II on Page 8) Super easy to read!

4. SATB2 Syndrome will usually present with: intellectual disability (NOBODY say the "R" word), absent or limited speech, palate and dental problems, overall developmental delay, behavior issues, and possible seizures and osteopenia.

All these things, from one tiny change!!!

5. They made mice with SATB2 Syndrome, and the mice that lived (many died) had similar symptoms as the humans with the same syndrome

6. SATB2 has some effect in brain development (not yet fully researched), which indicates defects in the corpus callosum.

The corpus callosum "connects" things in the brain, from one hemisphere to the other

7. It has been suggested that the SATB2 gene acts as a tumor suppressant (because elevated levels of the SATB2 protein have been seen in tumors, the guess is that the body sends it in to fight cancer), but since no cases of an SATB2-affected person with cancer have been recorded, this remains an unanswered question about the affect of abnormalities on the SATB2 gene in relation to cancer.

Career Ideas

I know I am thinking WAY ahead here, but I want to list things I can do now and in the upcoming decade to help Chelsea get ready for employment! Because I believe everyone has something to contribute! Everyone has talents and interests, and can add value to society! There are tons of job opportunities, even if they never learn to read, write, or talk!

1. Explore animals! Would she want to do a dog-walking business? Work on a farm or ranch? Try to play with other pets, visit the farm and zoo, read books and sing songs, and later volunteer at animal shelters or the pet store.

2. Explore the arts! Go to plays, visit art museums, watch dance companies, try a dance or painting class, listen to music, lots of options! Maybe later she will want to be a model or costume coordinator!

3. Explore outdoors! Does she like fishing? Gardening? The mountains or forest? Playing outside on the playground? Later on, she could be a flower arranger or something in the parks department!

4. Explore foods! Try different foods, make different food, put together picture recipes and see if she can follow those instructions! Does she want to work at a restaurant? A grocery store?

5. Have Fun!!! Does she love books? Games? Movies? Shopping? Would she want to help re-shelve books at the library, or volunteer with early intervention respite and play games with the kids? How about making popcorn at the movie theater? Or folding clothes at a retail store?

There are SO many choices!!! Starting at age 16, a transition plan should be a HUGE part of every IEP!!! We need to prepare our kids (non-disabled and disabled alike!) for the "real world", rather than succeeding in an educational vacuum.

What will make YOUR child happy and go on to lead a fulfilled life? So explore different avenues! Try out volunteer work early on so they can get a feel for what they like! Everyone can contribute!