Ups and Downs of Down Syndrome & SPD

This has been a crazy week of lots of ups and downs.  

It began Sunday. 

I usually teach in the nursery, but this Sunday Kyle and I were in Maddie's class teaching.  

This was the first time for me to teach her class. 

Sometimes life has a way of dishing out a large dose of reality.

I never realized how difficult social situations are for her. 

At home she's busy, vibrant, talkative, and on the go.

In public she's reserved, shut off, defensive, and withdrawn.

It's heartbreaking. 

Big Down. 

The next morning she and I were out pulling weeds in the flower bed.  

She was beside herself with joy!

At one point she pointed to her face and exclaimed, "I'm HAPPY!!!

Huge Up!

Later that same day we went to the library.

While I was getting some books to check out, Maddie was playing on the computers.

Another little girl came to the library and after a few minutes she came up to me and said, "I saw your daughter sitting over there and she was mean to me!"

Her mom quickly chimed in and said she was not mean.

I told her sometimes Maddie just doesn't know what to say to new friends.

It's interesting that this little girl interpreted Maddie's "stand-offishness" as mean.  

I know what she's talking about.  

Maddie does not respond appropriately or what we consider to be polite in social situations.  

It's heartbreaking.

Big Down.

But then we get home and she helps me in the kitchen and I'm blown away by her abilities.

She was helping roll out naan bread!  

After her good work she exclaimed, "I did it! I did it! I did it!" 

Huge Up!

This is actually a typical week for us, full of ups and downs.  

There's always something to learn from all of it.

We've realized we really need to practice teaching Maddie how to handle herself in public.

Things that you don't necessarily think you have to teach kids like: 

1) When someone says "hi" you say "hi" back to them

2) When someone tells you "bye" the right thing to do is say "bye" back to them

3) When someone asks how old you are, tell them "I'm 6"

And then of course, the things that we all have to teach children like

1) What a compliment is and to say thank you afterward

2) How to have a conversation (ask a question, wait for a response, they ask a question, you answer)

We've got a lot of work ahead of us! 

Next time you see Maddie, help us practice.  

Tell her hi and ask her how old she is!

This is it.

For me, this is it.

This is what childhood is all about!!

I cannot even put into words how much I love these photos.

You know how there are little gifts in life that give you just the boost you need to keep on keeping on? 

This is it for me.

  

Consider me boosted!

How's Maddie Doing?

Maddie is in a good place these days!  

She seems happier and her frustrations seem to have eased.

I've been listening to audiobooks while doing housework lately (you have to have SOMETHING to make the task bearable!) and I recently "read" Gary Chapman's Five Love Languages for Kids.

I've been trying to pinpoint Maddie's love language and I'm pretty sure it's quality time.

Any time she comes and asks to play, instead of telling her "just a minute, let me finish this one thing" I try to stop what I'm doing and play.

I can tell a HUGE difference in her willingness to cooperate or "obey right away" as we tell her!

Of course some days are better than others. Last Sunday at church, she escaped and ran outside!!

Thank goodness, there were adults around to corral her back inside.

Unfortunately, she wasn't at all grateful.  

This mommy was though!!

On the potty training front, she will go to the potty when I tell her it's time, but she doesn't realize herself when she needs to go and she still doesn't feel when her diaper is wet.  

She will sometimes tell me when she has stink but not always.  

It's still a work in progress!

Our other main issue is sleep.  

We have established that bedtime is 8:30.

Although she is not ready to go to sleep until usually 9:30 or 10:00, she goes back to her room to play or read books and entertain herself until she's ready to fall asleep.  

So far, she's not quite capable of handling this time on her own, so there's a lot of calling for mommy and daddy.  

She has anxieties of being left alone, (plus if her love language is quality time, being alone is pretty awful) so we are very slowly easing into this and she will often require Kyle or me back in her room to fall asleep. 

As soon as she wakes up (anywhere between midnight and 2am) she comes to our room and sleeps the rest of the night in our bed.  

Our potty and sleep issues are just part of the Sensory Processing journey that we have to let be.

Her speech continues to improve, which is fantastic.  

One of our favorite apps that we use is Articulation Station.

I like that you can record her pronunciation and take it into our speech therapist!

Fine Motor is another issue we are working hard to improve.  

At preschool they work on writing their names.  

Here's her latest work!!  

I bought her these writing claws  and sent them to preschool.  

She's doing so good! 

So that about sums up how she's been doing lately!  

A lot of you were wondering about how she did with the storms last night.  

As soon as we got into the shelter, she was saying, "too loud!"

We had these earmuffs  to put on her, and she was fine after that point.  

Our neighbors had a little dachshund in the shelter with us and that was the perfect distraction for her!!

We are loving life and looking forward to her ballet recital this afternoon! 

Valentine's Tea Party

Maddie hosted her first REAL tea party!

When you have a little girl, you dream of tea parties with guests like Teddy Bear, Dolly, & One-Eyed Tiger (he tragically got his name after a run-in with the dog).

For this tea party, Grandma and Grandpa were among the honored guests.

A REAL tea party, complete with REAL tea cups.
Delicate, tiny tea cups.  (eeeeek...so cute!)

We had a great time and Grandma and Grandpa were much more talkative than Teddy, Dolly, and One-Eyed Tiger.

We hope to have many more tea parties with friends and family!! 

An update on Maddie

The other day I was thinking about all of the specialists in Maddie's life. 

We have her pediatrician, endocrinologist, otolaryngologist, cranial sacral specialist, cardiologist, ophthalmologist, speech therapist, occupational therapist, and now we can add child psychologist to the list.   

Life gets overwhelming sometimes.  

Since she was showing some signs of what may be post traumatic stress disorder, we decided it was best to seek the help of yet one more specialist.  

I'm so glad we did!

She eased a lot of my concerns and additionally helped me know what to make of some of her "quirks."

I was mostly concerned with her repetitious behavior of stacking objects over and over over.  She gets in a loop and becomes obsessive about it.  

I didn't know if she needed the "release" of the activity for the sensory processing issues, or if it was truly unhealthy. 

As it turns out, it may be a little of both.  

She stacks because it's an activity that she knows and it is familiar.  She can anticipate the outcome, but at the same time, she's not being challenged.  

She's bored. 

She needs other stimulation, but not so much that she gets overwhelmed.  

The second issue we were highly concerned about is her increasing frustrations.  

She seems agitated and upset more than she's relaxed and in a positive state.  

I found out this is because she's so smart! 

 She knows a lot more than she's actually able to produce.  

Her cognitive skills far outweigh her language and motor skills.  

There's a lot that she knows and wants to do, but is limited by her body.

You can imagine this would cause a LOT of frustration.

We have backed off of her music therapy and bone conduction therapy in order to focus on her social emotional health.  
The last couple of weeks she seems much more happy and content.

She's been playing well with friends, asserting herself more often, engaging in conversations more, and LOVING ballet or "al-lay" as she calls it!

Favorite Pictures of Maddie from 2014

Hi friends!

Many of you have commented on the scarcity of updates lately.  

I know everyone likes to see what Maddie's up to and enjoy watching her grow through pictures. 

I thought I could get you up to speed with some of my favorite pictures throughout 2014.  

Thanksgiving 

Halloween

Disney World

Maddie is like a complex puzzle.

Sometimes we find pieces that fit together and sometimes we fall to pieces,

but regardless of our ups and downs there's always joy.

Thanks for taking the time to read our blog and invest in our life!  

We love you!

Halloween Treats!

We had a great Halloween this year!  

I was a bit ambitious with Maddie's costume and stretched my sewing prowess into an entirely new level.  

Thank goodness for good tutorials from Make It- Love It blog!!

I would have NEVER pulled this off without her.  

My sisters and mom and I were going to make a day of freezer meals Saturday and since Halloween fell on a Friday this year, Maddie and I went to Grams and Papa's early.

The only trick this trick-or-treat season was not having Daddy with us.  :(

Maddie genuinely LOVED being Mary Poppins.  

This year was so fun because it was like this was the first year she was really connected and present.  

I'll update later with a post on her progress with Sensory Processing Disorder, but I could definitely tell she was more "available" this year.  

The great thing about being in Woodward for Halloween was being with family.

She loves her cousins so much!

And they are so good to look after her.

We also got to visit my Great Aunt and Uncle.  

It's always good to catch up!!  

Maddie and Uncle Merritt switched hats for a good laugh!

And she gave big hugs bye-bye...

And came out with an amazing haul of candy and goodies this year!  

Good memories of another Halloween.