apraxia: one year later.

a little over a year ago...

payton was diagnosed with childhood apraxia of speech.

i cried.

i pouted.

i screamed that it is not fair.

i had a bit of a poor me moment.

and i moved on.

because baby girl needed me to move on.

she needed me to put a plan into place.

a plan that would hopefully one day allow her to be understood.

by us.

by her peers.

by anyone that she comes into contact with.

and so i do as only i know how to do.

and i butted it in the head.

full force.

for the past year...

we have gone to private therapy four times a week.

yeah... momma is a wee bit burnt out.

mondays and wednesdays.

private therapy with a PROMPT trained therapist.

we drive 45 minutes each way to see her.

our God send.

tuesdays and thursday.

private therapy.

ST. OT. PT.

among speech therapy she gets at school.

some will argue that less is more.

sorry, but i do not agree.

 i wholeheartedly believe...

that payton is where she is today...

because of the consistent, intense therapy we have done.

and we still have so far to go.

but baby...

we have come so far.

here is payton repeating an apraxia word list one year ago.

and here she is repeating that same word list now.

there are so many of these words she can now say more clearly.

she can put more of those consonant and vowel sounds together.

apraxia is a motor planning disorder.

there are several consonant and vowel combinations she still cannot do.

and there are some words where she still drops the final sound.

like the -se in please.

or the -t in eat.

or...

she tries so hard to get that final sound...

that she brings it to the beginning of the word.

i am so freakin proud of her.

and my heart seriously breaks as i watch her try to talk.

she wants so badly to be able to say what she wants to say.

but she literally cannot.

the wires do not meet and the only thing we can do it continue to try.

and we will not stop.

not until this baby girl of ours can say everything she wants to say.

because isn't that what she deserves?

and here she is a year ago repeating my unofficial word list.

and today...

the same unofficial list.

The drama that is Payton.

This chick seriously cracks me up.

Drama, attention, drama, attention.

Five years ago...

as I sat in a hospital room crying my eyes out...

"We think your baby girl has Down syndrome."

I was not really sure if she would ever be smart enough to play me.

Ohh boy... was I ever mistaken.

This chick has it down...

perfected, actually.

Ohh... she cracks me up.

Sisters = Love.

Since Payton was born, I have blessed to meet so many amazing people... many of whom are now my closest friends. When we were in process to adopt Nika... I met Charissa online. At the time, she and her husband were in process to adopt Ava... a little girl with Down syndrome from Ukraine.

I think the thing that struck me most about Charissa was that she did not have a biological child with Down syndrome. And at first... things were not how she imagined they would be when she first met Ava. I remember sitting in front of my computer and just crying over her words and her fear... just praying that she could see past the orphan. And did she ever... she embraced Ava and loved her and brought her home.

Last week... I finally got to meet Charissa, Ava and the rest of their family... which now includes two additional children that they adopted. They rock.

Some of the crew... it was hard to wrangle 10 kids at once.

I will never forget reading these words from Charissa's husband... John... with regard to their adoption of Ava...

When Charissa came to me and asked me, "Can we adopt a little girl with Down Syndrome?" I didn't say anything. I just thought.

Then she said, "... there is a little girl in Ukraine that needs a family." I didn't say anything except.. mmmm.

I began to go over and over in my mind how MY life would change. How would this affect ME. What if this happened what if that happened. How would this little girl integrate into our family?

So, here is a list of questions I asked, prayed over and meditated on for several days:
- This is a huge commitment
- Will she talk, eat, walk
- What will Word of Faith folks think of me having a child with a disability
- How will my life change with this little girl
- Will my kids accept her
- Will my kids rebel
- Will my kids be safe while I am half way across the world
- Can I afford this
- and many other thoughts

Then I had this thought.. What is this little girl thinking:
- When is my daddy going to come kiss my neck and throw me in the air?
- When is my daddy going to come help me get my eyes fixed?
- When is my daddy going to help me learn how to eat, walk, talk?
- When is my daddy going to take me out of this crib and put me on his shoulders?
- When is my daddy going to hold me close at night before he puts me to bed?
- When is my daddy going to tell me he loves me?
- When is my daddy coming to get me? Why's he taking so long? I'm ready!

God defends the orphan! He will defend me and my family..

What a blessing little Ava has been in my life! I just cannot imagine life without that little girl. Jesus will increase your ability to love every child you bring into your home. He'll work miracles in your heart and in the hearts of a whole lot of other folks too.

Don't be afraid to LOVE! Love heals.



::

Speaking of people I have met over the past several years... and when I say met... I often mean met online... as um, weird as that sounds. Ha. Anyway... I just got home from the Juice Plus+ conference in California... and while I was there... I was able to meet up with some amazing mommas.

Some of our awesome team... Kristen, Linda, Debby, yours truly, Mandy, Rachel... MIA Kristin

After conference... Linda and I got to crash Ella's birthday party and meet some more awesome mommas... Cheri, Heather, Stephanie, Cammie and so many more. I forgot my camera, so I got nothing to show. Boo.

Then... Linda and I drove to Los Angeles for a couple days. That was interesting... and so much fun. We toured the city in the torrential downpour like teenagers... sadly we did not see anyone famous, which of course was our main goal. Yes... teenagers, I know. Ha... but it was so fun.

Kodak Theater, Hollywood sign behind the fog, Rodeo Drive

We were able to meet up with Darlena for lunch at Universal Studios City Walk in the torrential downpour... love her. Seriously... what up with the massive storms slamming SoCal the one time in my life I am there?

The shadows in this place were not nice to me.

And then... we got to have dinner at this little French bistro that Linda seriously loved loved loved with more Down syndrome momma friends... they are all such awesome girls and could quite possibly allow me to consider moving to California. Ha.

Kristin, Linda, yours truly, Cheri, Jen, Brenda

::

I really hate traveling without my babies... the older I get, the worse it gets. It seriously makes me anxious. I was so happy to see them when I got home.



Love me some lip puckers.



Nika is getting it down... sideways and all.









Hmm... what is that bubble doing hanging on there?



I could kiss those little lips all.day.long.



Sisters = Love.

Love that chick.

Payton is by far the pickiest eater in our house... behavioral as it may be. Her speech therapist spends about 15 minutes of each session working with her on eating different textures... and trying to do so without gagging. She has a very sensitive gag reflex... and if she had it her way... her diet would consist of the following...

• pizza
• chicken nuggets
• french fries
• yogurt
• chips

She will eat other things like spaghetti, chicken quesadillas, oranges and such... she just prefers not to. And thank goodness she does not make her own meal choices. I swear her eating could easily become a battle... but I try to be patient with her. I cannot imagine that she prefers to gag when eating a variety of foods. Chew, chew, chew is a common phrase at mealtime.

Sigh.



I get on these little kicks where I decide that I will not accommodate her behavioral meal choices anymore... and give her what the rest of the family is having. Because I know she can eat it... she just would rather have chips. And sometimes... when I don't feel like fighting the fight... I do make her a separate meal.

A few nights ago I used my menu planner and made chicken parmesan for dinner... with a side of corn. And I sat there with Payton until she ate every last bite of her chicken and at least a few bites of her corn. She gagged all the way through it and I chanted... chew, chew, chew. Her technique was less than desirable... chewing her chicken at the front of her mouth, likely secretly hoping it would just fall out. I nipped that in the bud... but now I am questioning myself.

Payton woke up in the middle of the night vomiting up her entire dinner. Like... several times. Did she have a bug? If she did, no wonder she didn't want to eat. Or was it her less than desirable chewing and swallowing technique of this food that she had no desire to eat? I am afraid maybe the food never made it completely down her esophagus.

Hopefully it was just a bug.

Even though she seemed to be feeling fine... I kept her home from school and took her in to be swabbed for strep. Negative. Days like that are some of my favorite times spent with my kids. Lazy day around the house... just the one child and I. 



Taking care of them... being a momma. Snuggling in bed for afternoon nap.



Payton... close your eyes and pretend you are sleeping.



Haha... love that chick.

::

I received the identification bracelets I ordered for the girls in the mail the other day. There has been a lot of discussion about what information the bracelets should actually contain.

Bracelets ordered from here.

On a whim after the great Barbie jeep escape... I ordered them with name, address and the cell phone numbers of both Kyle and I. After thinking it through and getting feedback from a few police officer friends... I think I need to order another set of bracelets with just our phone numbers on them.



And while I would love to have the girls wear these bracelets every minute of every day... I am not sure it is really feasible. I am just not sure... I am struggling with this. And the bracelets obviously will only go so far to help if the girls did end up missing... depending on the situation and whether or not they are found by the right person. That said... I am glad to have them for times when we go on vacation or to an amusement park... and other places of the like.

Meanwhile... I spoke with a Deputy Sheriff friend of ours about the Project Lifesaver. Unfortunately... our county has a waiting list due to budget restraints. So... this is not an option for us right now. We could get our own bracelets... but I am still on the fence... and I am not sure why. I don't know... I just want my girls to lead their lives as normal as possible... but at what point does it become too late? I do think... however... that I will be getting this for those times that we need it.

Decisions, decisions.

::

We are knee deep in all things IEP, FAPE, IDEA, ESY, LRE, PLOP*... and so on. We have Payton's kindergarten eligibility meeting in two weeks... and I am anxious, to say the least.

I have consented to the psychological testing for Payton and I am not sure if that was the right thing to do. I am feeling at peace with the decision... right this moment... but in five minutes I could read something that will change my mind. The outcome of this testing will determine her label... she will lose her DD* label... and I am okay with that... as long as it does not affect the services she will receive.

I could go on and on... but I won't since the end result is all that matters and I will update on that once we are there. If you are a parent or teacher or anyone else that is involved in inclusion of a child with Down syndrome... please feel free to join a new group that I created on facebook. We are up to 326 members nationally... well, even internationally... and there is a ton of great information.

IEP = Individualized Education Program
FAPE = Free Appropriate Public Education
IDEA = Individuals with Disabilities Education Act
ESY = Extended School Year
LRE = Least Restrictive Environment
PLOP = Present Level of Performance
DD = Developmentally Delayed

::

Headed to California later this week for the national Juice Plus+ conference... so excited. The conferences are always so inspiring... and they remind me why Juice Plus+ is such an integral part of our health.

We are also having a DS mommas meet up at City Walk while I am there... email me if you want to join us!

What I envision...

I love my life.

I am sitting here... in the midst of my family... cracking up hysterically while watching them play hide-and-seek. One, two, three, four... ready or not, here I come! I believe the rules of the game have officially been changed... that, and the quirks of young children (namely: Chicky) playing hide-and-seek... well, it is one of those moments that makes you want to pick up your kids and smooch them til the cows come home.

• Chicky counting... A, B, C, D... and turning me to ask, "Momma, where Daddy? Maymay? Where do?" (pronounced dough)
• Chicky seems to think that you are supposed to hide in the same place every.time.you.hide. Under the covers or behind a curtain... every.time... all the while thinking she is being just as tricky as the first time she hid there.
• When Chicky is hiding... and she hears the ready or not holler... she giggles. Hysterically. And she greets the seeker from her hiding place... "Hi Daddy!" Doesn't make for hard finding... but most certainly makes for lots of heart swells. 

::

One of my guilty little pleasures is oggling (is that a word?) over crafty, home design blogs. Some people are so freakin talented. I love crafty, do-it-yourself type projects... but I usually need to pull inspiration from somewhere.

I have a problem with meals. I mean... I have great intentions... I buy all the ingredients... but then let them go to waste in my pantry. Our days are busy and dinner time often becomes a grab-what-you-can meal... rather than that of a good home cooked meal. What I envision in my head is... "Please pass the potatoes. How was your day, dear? Don't forget to eat your vegetable. What happened at school today?"

Yeahhh ... haha.

But now... now is the time, dammit. I was scrolling through a blog that I follow... crafty girl... mom of a little boy with autism... we talk therapy... we talk IEPs... we talk inclusion... love that. And I came across a menu planner board... seriously the answer to my problems. 

So I made me one.



Got me a cheap little framed cork board from Michaels... don't forget to use a coupon --> cheap. Picked up some scrapbook paper and found these little clothesline clips at Walmart --> freakin cute.



Bought me a can of brown spray paint... sprayed and rusticized (ok... that really is not a word) the frame, the clothesline clips and the thumb tacks. Found these recipe cards at Target years ago... they were meant for a bridal shower gift. Oops... guess that never happened.



Mounted my scrapbook paper on my cork board using acid free scrapbook glue. Went to my handy dandy computer... printed off some menu items and my days of the week... mounted them on acid free scrapbook paper... wa la.



There she blows... err something. I am thinking the wall is a bit bare... and perhaps I should have made it a wee bit bigger... but whatever... nothing some accent items can't take care of. I have a menu planner and we have had our sit-down-and-pass-the-potato-dinners almost every night so far.

Love that.

(tutorial here)

::



We are anxious for warmer weather to settle in for the long haul... all the while taking advantage of the random sunshine that we have had. Our grass needs to green, our bushes need to bloom.





So... I am wondering... is it just my kids or are holes in the knees some sort of you know... new thing? Haha. Mason has holes in the knees of every pair of jeans he owns... literally.every.pair. And Nika... she has them too.





What on earth do my children do to their jeans? Momma gonna go broke replacing these things. On second thought... shorts are right around the corner... holes will have to do. I mean... they would just ruin the new jeans too, no?

Sigh.

::

More to come on inclusion, IEPs, labels... I have to show you the girls' identification bracelets I got and bounce more ideas on those... oh, and my Valentine's gift that I never posted about because I was in a funk over my failed FET cycle... it is coming... you know, in my spare time... oh, and a giveaway I need to get put up.

But for now... I need to go finish putting away my Christmas decorations... and my Valentine's decorations... and I need to do the dishes... and go through my kids clothes... and organize our storage area... and wash my dog... and decide on some new decor... and...

Inclusion and Access to the General Education Curriculum

Being the parent of a child with special needs ... you never stop learning or advocating. I understand that you continue to learn and advocate for any child, but doing so for a child with special needs takes it to another level. It can definitely be exhausting, but you have got to be on top of your game.

I attended a seminar yesterday put on by Ricki Sabia, Associate Director of NDSS National Policy Center. It was very good ... and I am transferring the powerpoint slides here because I know there are lots of mommas (and poppas) out there interested in what she had to say. There is a lot of information ... make sure you take time to get through it all and focus on UDL.

Academic Benefits of Inclusion

(source)

• Students earned higher grades and higher scores on standarized tests.
• Greater progress in reading and math when compared to students educated in resource setttings.
• Higher high school completion rates and college attendance.
• And for students without disabilities: Achievement increased in at least one academic area. In other words, students without disabilities do benefit from having students with disabilities in their classroom.

Social Benefits of Inclusion for students with disabilities

• Students with disabilities in general education classes had more friends.
• Teacher ratings showed improved social skills.
• Students do not demonstrate high levels of loneliness.

Social Benefits of Inclusion for students without disabilities

• Improved self concept.
• Reduced fear of human differences.
• Increased tolerance.
• Improved social emotional growth.
• Improved personal conduct.
• Positive outcomes for high school students who had interaction with students with disabilities.

Behavioral Benefits of Inclusion

• Higher level of engagement in school activities.
• Sharp decline in discipline referrals after shift to inclusive practices for students with and without disabilities.

Benefits of Inclusion for post school outcomes

• Increased employment rate and job skill level.
• More time in general education programs resulted in better postsecondary outcomes (click here for PSE opportunities for students with ID).

Each state's Department of Education should have an inclusion philosophy laid out for teachers. Ricki Sabia from NDSS recommends printing this off and presenting it in your IEP meeting ... if needed ... to show them (in times of resistance) their own philosophy that they should be adhering to.

Virginia DOE New Teacher PPT
Benefits of Effective Inclusive Practices for teachers
(source)

• Increases opportunities to develop professional learning communities through growth in knowledge sharing and skill development.
• Increases confidence in teaching students with diverse academic and social needs.
• Creates opportunities for better understanding of students with disabilities.
• Enhances knowledge about effective teaching and learning strategies.
• Increases level of content knowledge.
• Promotes understanding of the IEP process, content and implementation.
• Provides support systems among teachers.
• Provides opportunities to problem solve with another professional and receive additional support within the classroom.

What is not inclusion?

• Mainstreaming only for non-academics. In other words, if a child is in a regular classroom for only encore, physical education, recess, lunch ... that is not inclusion.
• An "inclusion class" without natural proportions of disabled students and peers.
• A seat in the general ed classroom without supports.
• Academic inclusion without social inclusion.
• An island within the room for the student and paraeducator.

Elements of Inclusion: Where Students Learn

• All students with disabilities are members of their neighborhood school.
• All students are assigned to age appropriate grades in heterogeneous classrooms.
• Student grouping are based on the individual interests and skills of all students, and not on disability labels.

Supports Students Receive

• Related services (i.e. speech therapy) are delivered in regular classroom settings and other school environments, when appropriate.
• Supports and services are provided in the classroom and coordinated with ongoing instruction.
• The provision of supports for students (instructional, curricular, behavioral, etc) is viewed as a school wide need.

Instructional Planning and Implementation

• Effective teaching strategies and differentiated instruction are used to meet the needs of every child.
• The general education instruction and curriculum is used as the base for accommodations and modifications to meet IEP goals.
• The instructional materials used for typical students are modified for assignments, homework and tests.

*Ricki Sabia from NDSS discussed setting broad academic goals in the IEP and then list under the "support" section that the child will get a list of modified curricular goals. The teacher must then set modified goals within the classroom for each academic area ... and these goals are what the child would work on, be tested on and be graded on.

Social Relationships

• Planned and structured activities are in place to promote social inclusion and friendship development.
• Students without disabilities are supported in welcoming students who have disabilities.

*Ricki Sabia from NDSS discussed the importance of putting a social network into place for your child. Enrolling them in extracurricular activities (i.e. dance, tball, cub scouts), encouraging them to manage sport teams if not at a skill level to play, etc. Facilitating this type of social interaction will be key in the acceptance of your child by his/her peers. 

Ricki talked about her son and how hard they worked to put these social relationships into place ... and was mainstreamed and happy. She also talked about a friend's child who was also mainstreamed, yet this boy did not have the social connections in place. He begged his parents to not mainstream him and to let him stay in the special education classroom, because he was not accepted by his peers in the student body. Just really makes you think about just how important the social relationships are in your child's education.

Staff Actions

• Collaboration between classroom teachers and special educator to implement IEP objectives in general ed lessons.
• Modifications/accommodations discussed by both general and special ed teachers.
• Supports planned to enable meaningful participation.
• School administrator(s) provide a vision and leadership and welcome all students into their school.

Who is included?
*LRE (Least restrictive environment): Congress states a strong preference for regular class.

• To the maximum extent appropriate, districts must ensure that children with disabilities are educated with children who are not disabled.
• Removal from the regular educational environment occurs only if the nature of severity of the disability is such that education in regular classes* with the use of supplementary aids and services cannot be achieved satisfactorily. This is important.
• The need for curricular modifications is not a reason to remove child from age appropriate regular classrooms. In other words, saying that a child cannot keep up with what his/her peers are learning in a regular classroom is not a reason to remove the child from the classroom. The curriculum must be modified and appropriate goals set ... within the classroom.

*Regular classes is not defined under federal law.

Hartmann 4th Circuit LRE Test (1997)
"Mainstreaming" is not required when ...

• A student with a disability would not receive educational benefit.
• Any marginal benefit from mainstreaming is significantly outweighed by benefits which feasibly can only be obtained in a separate setting.
• The student is a disruptive force in the classroom. This is exactly why behavior is so important in having your child mainstreamed. Start early in trying to teach your child what it means to sit and complete a task, as directed. One of the biggest problems parents have is in a regular classroom is when their child will not go with the flow of the classroom (i.e. sit in their seat, sit in circle time, etc).

Where are they included?
The child's placement ...

• is determined at least annually.
• is based on the child's IEP.
• is as close as possible to the child's home.

*Unless the IEP of a child with a disability requires some other arrangement, the child is educated in the school that he or she would attend if not disabled.

When are they included?
In addition to being included in the classroom ...

• Districts must ensure that each child with a disability participates with children who are not disabled in non-academic and extracurricular services and activities to the maximum extent appropriate to the needs of that child.
• Supplementary aides and services must be provided if needed to participate (i.e. peer support). I think this is important and is likely something we will need to advocate for.

How are they meaningfully included?

• Social inclusion
• Appropriate supplementary aides and services
• Differentiated instruction
• Modifications, accommodations and adaptations
• Universal Design for Learning

 Social Inclusion Tips

• Start inclusion as early as possible in the grade the child will stay in.
• Staff training and IEP goal for social inclusion.
• Disability awareness for students.
• Info for classmates parents.
• A few transitional friends in class every year.
• Full participation in class, school activities and community activities.

Differentiated Instruction

• Tiered products/demonstrations (different levels of difficulty built-in).
• Varied modes of expression/demonstration.
• Group projects.
• Graduated rubics (levels of expectations).
• Multiple intelligences.
• Independent study.
• Contracts/negotiated criteria.

Accommodations

• Changes how a student gets information and demonstrates learning.
• Does not fundamentally change instructional level, content (standards) or performance criteria.

*Example: Less info on a page, calculator (if basic math is not being assessed).

Universal Design
Consider the needs of the broadest possible range of users from the beginning. ~Architect, Ron Mace
(materials here and here)

*Universal Design originated in architecture. An easy way to explain it is this ... when an architect designs a building, they design it to accommodate every person that may use it ... those on foot, those in a wheelchair, etc. The same premise should be used in the classroom.

Universal Design for Learning (UDL)

(click here for more)

• Design curriculum, materials, teaching methods and assessments to be accessible for all students (disabled and non-disabled, included or not).
• Provide multiple and flexible means for acquiring and expressing knowledge and engagement.
• Requires less adaptations, modifications and accommodations - less being "different".

UDL for Curriculum and Instructional Objectives
Goal: To provide optimal challenge for all students.

• Describe objectives in ways that students can understand them.
• Set objectives that every student can reach with appropriate tools and alternative paths to success.
• Set objectives that motivate students to learn (i.e. breakdown long term goals nto reachable objectives/benchmarks for all students).

UDL for Instructional Materials
Goal: To ensure equal access for all students.

• Provide a range of formats and media at different levels of complexity.
• Provide different materials for students to express what they know.
• Provide materials that keep students engaged.
• If possible, use customizable media and materials.

UDL for Teaching Methods
Goal: To provide effective instruction for all students.

• Provide multiple examples.
• Highlight critical features.
• Provide multiple media and formats.
• Explain background/context.
• Provide positive behavioral supports.

UDL for Assessments
Goal: To accurately measure progress for all students.

• Assessments should adjust to many individual differences.
• Assessments should focus the questions on exactly what teachers, districts and states are trying to find out (i.e. knowledge, skill or emotional development).

UDL Through the IEP: Goals and Materials

• Selection of curriculum goals and objectives per marking period.
• Homework and projects aligned to selected objectives.
• Alternate formats of textbooks, novels and supplemental materials to support instructional units.
• Use of computer for written assignments and for accessing digital text and other software.
• Preview of instructional materials.

UDL Through the IEP: Teaching Methods and Assessments

• Class discussion questions in yes/no or multiple choice format.
• Teacher training on technology used by the child.
• Teacher made assessments based on curriculum objectives, which are designed to eliminate barriers caused by the disability.
• Digital assessments.

UDL Task Force (federal level)

• Spearheaded by NDSS in 2006.
• Coalition of 41 national groups representing general education, special education and higher education interests.
• Promotes UDL in Federal policy and legislation and disseminates information on UDL.

Maryland Bill Template
(click here)

• Provides a narrative of steps taken by the Maryland Down syndrome Advocacy Coalition as its members worked on passing a UDL bill.
• Gives examples of hurdles and process faced in any legislative advocacy.
• Provides specific information and documents that can be used by other affiliates to move UDL forward in their state.

Key Steps in Template

• Develop a one page summary about UDL and why it is important.
• Get the word out through a website, listservs, brochure, webinars, etc.
• Form a statewide stakeholder coalition representing special, general and higher education interests.
• Enlist help of your state department of education.
• Find a legislative champion - work on drafting bill.
• Educate legislators and get co-sponsors.
• Ask for local school board support.
• Testing at hearings.
• Compromise.

Resources

• Wrightslaw
• Maryland Coalition for Inclusive Education
• General info on UDL (click here and here)
• National UDL Task Force
• UDL in Maryland
• UDL mentioned on VA DOE website

Dreaming of spring.

Mason (playing Pokemon): Mom! My name on Pokemon is Nate ... I have two friends named Nate.

Me: Yes, you do.

Mason: Yeah ... my friend Nate at school and then that other Nate ... how do I know him again?

Me: He is my friend Michelle's little boy. He has a little brother that has Down syndrome ... just like Chicky and Nika. His name is Matthew.

Mason (looks at me surprised): Well ... I didn't know he had a brother with Down syndrome! I mean ... I know Matthew is his brother but I didn't know he has Down syndrome.

Me: Yep, he does. 

*sniff*



Mason knows that his sisters have Down syndrome. He knows that sometimes it takes them longer to do certain things, or longer to talk or that sometimes they might not understand things like he does. But we have never really spent a lot of time discussing it ... it is just the way it is and we don't focus on their differences. And then listening to him try to pronounce the word syndrome makes it clear to me just how little we talk about it.

So sometimes life stands still and I wonder what he really thinks. I wonder to what level he understands. And then we have conversations like the one above that make me all emotional ... because I know he gets it. He just knows and it really does not matter what it is called. I know that is why he has the compassion that he has for his sisters. I know that is why he steps up to the plate to help them and to teach them in ways not typical of a 7 year old.

I know this. And it is awesome.

*

In the seven years that we have had kids ... we have somehow avoided Build-a-Bear. Until now. The kids all got Build-a-Bear gift cards from their grandparents for their birthdays ... so we went. It was pretty much the chaos we have avoided the past seven years ... but they Mason had so much fun.

And $150 later ... we left with three stuffed animals decked out in gear. Err ... at least Mason and Nika's animals were dressed. Payton ... well ... she is a n*dist and um ... so is her monkey.

Stinky, Rusky and AJ

*

Warmer weather is upon us and that means we have been enjoying the outdoors.



There's that damn jeep. Seriously though ... Payton loves that thing and she drives it like a maniac.







Dreaming of spring ... wishing it would stick around already.

Until it is you.

So I have had all these intentions of finishing a blog post that is half drafted about um ... not much. But then today rolled around ... and this momma was dealt a bit of a scare. And it isn't so much the scare that I want to focus on ... yet how to prevent this from happening again.

Because with these two chicks ... I know it is bound to happen.

Earlier this afternoon, I lost the girls. We were all outside playing ... they were riding around in their jeep and Mason was playing basketball. I ran inside to get my shoes and the next thing I know ... Mason came running in telling me something was seriously wrong.

The girls were missing. He had gone around the side of the house to get a ball and in that time ... they had driven off. He ran down the street where he thought they had gone ... nothing.

About 20 minutes later ... after sobbing, driving around our side streets like a maniac, sobbing some more, asking my neighbors for help, sobbing and getting the police involved ... they were found. They had made their way to a trail that runs back behind our houses ... ditched their jeep and were walking hand-in-hand.

With not a care in the world.

And this is my concern. I am really not a fan of characterizations, but seriously ... children with Down syndrome like to flee. We have to keep a close eye on the girls ... and Mason ... bless his heart ... is a great second set of eyes for us. And as much as it is not his job ... he really takes it upon himself and that is a huge help since ... you know, I don't have eyes in the back of my head.

The difference is that my girls will take off and just do their thang. They have no clue how far they are from home ... or that they are lost ... or that they have no clue how to find their way home. They have no sense of fear.

As I have been rehashing this in my mind today ... I have found myself comparing my girls to Mason. If Mason ever came close to getting lost when he was younger, he would shriek out in fear ... "Mom! Mom!" And the tears would flow.

My girls? Not so much. 

So I am carrying a conversation from facebook over here to my blog ... because I think it is important. I have seen these little electronic monitoring bracelets that some kids with special needs are wearing ... I just have not been sold.

Until now. Until it happens to you in the two seconds you looked away. Because that is how it happens. And you never think it will be you ... until it is you.

After we were reunited with the girls ... one of the police officers asked Payton her name. I had to explain to him that she can't say her name. My five year old cannot say her name. She cannot tell you who her parents are. She does not know what her address is. Nor does she even know what city she is from. I think that was hard for him to understand, but he was very nice about it.  

It just really made me think.

Sad that it takes something like this for me to prepare for the next time ... if there is a next time, God forbid. This isn't the first time Payton has been lost ... but I think having the police involved made it that much more grand.

Here are some things I am doing ...

1) Those little ID cards they send home from school? Or even the ones you can have made at your local Sheriff's office? Keep them. Put them in your wallet. Know exactly where they are. 

*The officers were running around my house looking for pictures of the girls. Current pictures. I was in such a panic ... I couldn't even think. I didn't even know where to look ... in my own house. I had one of our Christmas cards laying on the counter (see ... I knew my mess of a house was good for something) and the officer snapped pictures of each of the girls into her cell phone, uploaded it to dispatch ... err something ... and told me that each of their photos would pop up on the screen of every squad car. Freakin technology is awesome. But even more awesome would be having a mom that is prepared for something like this.

2) ID bracelets. I just ordered each of the girls one of these ... I imagine I will put them around their ankles, but we will see how that works out. For $8.95 each ... I figure I cannot go wrong.

3) I am looking at this or this or this ... and wanting more suggestions as to what might be best.

That's all. My head hurts. My babies are safe and sleeping in their beds. Never a dull moment ... that is for sure.

Think about it.

Don't pity them. Don't talk down to them. Be open to them. Be open to people. It changed my life, I think it would change yours.
~Johnny Knoxville, discussing use of the R word and reflecting on his work in The Ringer with Eddie Barbanell, an individual that has Down syndrome

Talk to them. Be their friend. Love them. Hug them. Do anything to raise the spirits of people with different abilities. It is like God taking something away from them in one area and making them extraordinary in other areas. Break down the walls. Break down the stereotypes. Break down every wall you can.
~Eddie Barbanell, an actor that has Down syndrome



I have been told before that I am too sensitive when it comes to the R word. Quite honestly, that is hurtful. Just as hurtful as the R word. Is that what you are going to tell my girls too ... when one day they inevitably will come crying to me because their feelings are hurt after hearing someone called them retarded? Are you going to tell them they are being insensitive too?

Do you realize just how often the R word is thrown around?



I know. I used to be one of those people. How ignorant was I?

The I-didn't-mean-it-that-way arguments are meaningless. It doesn't matter how you meant it. Using the word insinuates so many things about my girls ... about any person with an intellectual disability.



Think about it. 

Is there anyone in your life that has changed your perspective of the use of the R word?