Real Life Part 1

Real Life Part 1

           It’s the beginning of the second week in April and I am both surprised and horrified to realize that it has been more than eight months since my last post.  So much has happened during that time, and I’ve needed every bit of that time to reflect on events and sort my feelings about them before writing them here for others to scrutinize and judge.  

NEVER could I have imagined that a pandemic would cripple our economy, or that the President of the United States would lie and put Americans at risk by not responding quickly and appropriately to that pandemic. Instead of being our light in the dark, our port in this storm, Trump (I refuse to use his title) takes potshots at the media and refuses to answer relevant questions regarding COVID-19.  

Today began the third week of e-learning for Addison, and it was tough on both of us.  She didn’t want to watch videos, or listen to songs, or point out shapes and colors.  I managed to get a pen into her hand, but she looked at me while drawing circles and lines instead of looking at her paper; after a few seconds she threw the pen over her shoulder and shoved the paper away before getting up and running to her room.  The slam of her door indicated to me that I should not follow.

I get that shelter-in-place is hard on everybody.  I think it is especially difficult for our special needs kiddos, because they don’t understand what is going on or why they can’t go to the park or play outside with their friends.  Today marked the first day in 21 days that Addison did not ask to “slide” or “swing” or to play in the “pool”, and the realization broke my heart. 

     Last week Addison turned five years old, and for the first time in her life she celebrated without the presence of a majority of grandparents, aunts, uncles, and cousins. Her Mema ( my mom) participated via phone, while Angela, Ronnie, Chris, Michael (also by phone) and I sang Happy Birthday and watched Addison eat cake. She’s getting so big,  I am both happy and sad about this.  

The elephant in the room, the thing I have been avoiding talking about, is what will happen next year when Addison starts Kindergarten. 

Back in February I participated in an ARD meeting for Addison, and formally agreed to reduce her time in the general education classroom by 20 minutes for the rest of the school year.   I was extremely frustrated by this, because I didn’t think it was best for Addison, but I finally agreed because it was clear to me that the general education teacher wasn’t equipped (and didn’t want to be) to teach Addison effectively in the general education classroom.  This teacher had also admitted that she doesn’t use Addison’s ipad to communicate with Addison in her classroom because her class is too fast-paced. 

The decisions that I make today will have an impact on Addison’s education years from now…and I don’t want to make a wrong one.   Will it be better for Addison to spend 100% of her time in a special education classroom next year, which is what her teachers are recommending, or should she split her time equally between general education and special education like I would prefer? I really don’t know.  But so far her teachers have not shown me any data that suggests Addison would be better off spending her time solely in special education.  If anyone reading this has experience in this area, either as a parent or an educator, I would love to hear from you.  

It’s late and I should probably stop here.  I have a lot more to share, but I need to ruminate a bit before I put it all out here for consumption.  Thank you for following my Down syndrome journey~~~~

 

My Little Slice of Heaven

My Little Slice of Heaven

 I love springtime~ right now I am writing this while sitting in a zero gravity chair on the back patio, listening to the sounds of our neighborhood; Little A is asleep in her crib upstairs, and all is well with my world. 

Two weeks ago we had a third ARD meeting, to add language in support of A’s use of assistive technology in the classroom.  We also increased Little A’s inclusion time from 15 minutes to 35 minutes.  It is my hope that she will eventually be fully included in school, if that is appropriate for her. I just want for her what every parent wants for their children: Happiness.  Friendship. Love. 

Little A is doing very well using technology to communicate.  She uses Snap+Core on an iPad to tell me whether she is hungry or thirsty, if she wants to go outside, and to learn animals and the alphabet 🙂  It is widening her world and I LOVE watching how technology is helping her express language and expand her vocabulary.  Also, her father has discovered a Sock Puppet application which has provided us with hours of fun making puppet presentations for Little A. 

Only four more weeks until my Michigan family comes to visit.  I can’t wait for A to be reunited with her cousins and watch her splash around in a pool again!  We’ve got so many plans while they are here: the aquarium, the zoo, the arboretum, LegoLand, and anything else that strikes our fancy…including lots of pool time.  We might even get Chris to join us for some pool fun!

Mostly I’m just happy my family is returning.  They haven’t been back to Texas since 2010, and I think they are going to enjoy it much more this time.  Mostly because I’m not living in the middle of nowhere, surrounded by dairy cows and not much else. I’m happier here in Prosper, mere minutes from shopping centers and fun times 🙂 

Little A saw her eye doctor on Monday, and he determined that her eyes have improved.  So much so that she does NOT need glasses and he will no longer need to see her every six months! This is fantastic news, mostly because I’m not sure how we would keep eyeglasses on her face. 

Her last day of school is tomorrow, and I will attend her end-of-year classroom party.  She only has seven classmates, and I’m hoping to discover the name of the little boy she’s taken a fancy to. I also want to say a proper goodbye to Little A’s teacher, as she will be teaching at a different school next year and A will have a brand new teacher.  I’m completely scared but mostly optimistic. 

Stopping here for now.  I will post some recent photos of Little A~ thank you for joining us on this Down Syndrome journey 🙂

 

It’s Spring in the City~Again

It’s Spring in the City~Again

     The past few months have been difficult.  I’ve had to advocate on behalf of my daughter with her school–which included consulting an actual advocate through PATH–to allow her access to a general education preschool classroom; I flew home to Michigan to see my uncle, only to find out that he died the day Little A and I arrived;  my baby girl is about to celebrate her fourth year on this earth.  And I have been ill-prepared for all of it.  

   Our time in Michigan went by much too quickly, but we were able to spend time with many people. Little A met my lifelong friend, Chris, and his wife and children; she met many family members and family friends, and she met my cherished boss and manager from Mac Wood’s Dune Rides (and Meg, too!). We had so much fun and so many laughs, and it was hard for both of us to leave.  

     Since our return I have been kept busy with holding Little A’s school therapists, and the school district’s diagnostician, accountable to the IEP that we all agreed to.  It has been five weeks, and Little A has not been evaluated for assistive technology. Just because the school has until April 15th to conduct an evaluation doesn’t mean they need to wait until April 14th to do it, and yet that is what they intended to do until I began emailing every person I could think of within the district. 

     I also sent reminder emails to the school therapists to prompt their emailing of progress updates.  How frustrated do you think I was when I opened each email and they all began with “…you should have received her nine weeks’ progress report…” REALLY??? The whole point of my requesting that each therapist who works with our daughter send monthly updates is so that I know what they are focusing on during sessions and what we should be focusing on at home. Seems so simple and yet the school therapists are making it so unbelievably difficult. I also requested to know dates and times that they work with Little A each week, and not one of them provided that information in their emails.

For those of you with special needs children, how have you handled situations like these? I’m trying to extend grace, to remember that my child is not the only one these therapists work with every week, but I don’t think monthly contacts to let me know how my child is doing is asking too much.  After all, they agreed to it. What are your thoughts?

In other news, Little A is having her FIRST EVER school photos taken on April 8th! I am so excited and also a little bit terrified.  I don’t want her to hate her photos the way that I hate mine 🙂 I’m excited because, for the first time, I am in the position to send adorable photos of MY CHILD to all of the friends who have been sending me photos of their children all these years. I’m pretty proud of Little A.

Speaking of Little A, she is suddenly (like, this week) hugging every kid near her.  She NEVER BEFORE voluntarily shared space with other kiddos.  If they came near her, she would remove herself to the other side of the room.  But now? Now she hugs 🙂  And I’m okay with it.  Other adults aren’t, but they don’t know my kid. They don’t know what a huge deal this is, or how far she has come.  

Let’s talk potty-training.  We have not been successful in this area, but we are considering trying again soon.  Little A will turn 4 years old at the end of this week, so we are wondering if we should start now.  If you have a child with Down Syndrome, at what age did you begin potty-training? How long did it take before your child was successfully using the potty regularly?  We tried for four months last year before deciding that she wasn’t ready, mostly at the school’s urging. We’ve got a potty, we’ve got potty books, we’ve got M&Ms.  What else do we need?

As always, thanks for following along on my Down syndrome journey~

 

 

Winter of My Life

Winter of My Life

     This has been another tough post to write, which is why I put off writing it.  We lost a second beloved family dog on November 17th, this time to cancer.  Sascha, our Australian shepherd, was diagnosed at the beginning of November.  By the time she began showing symptoms the cancer had already spread throughout her body.  The oncologist told me that chemo and radiation might prolong her life for a couple of weeks or months, but it would not cause her cancer to go into remission.  Because she had been so loyal to me, I wanted to be loyal to her and not put her through that.

    Instead, our vet prescribed medicines to help ease Sascha’s suffering.  She died at home, with me sitting next to her and stroking her fur.  I miss her so much and hope that she has reunited with Daisy 🙂 

     Tomorrow I give the first of two presentations that I have to give in order to graduate: tomorrow’s presentation is on Managing Multiple Generations in the Workplace, and Mondays’ presentation is convincing a small ballet company to implement a volunteer orientation and create a volunteer handbook. I am actually looking forward to both.  Weird, I know, but I love public speaking.  Especially when I know what I am talking about! If all goes well, I will end my academic career with a 3.9 GPA and a master’s degree in Administration…wish me luck!

     Getting back to Little A…she is doing so well in therapy according to her therapists! She says words in their company that she never says in ours, and she is making great strides in her gross and fine motor skills. Her Dad and I are so very proud of her, and are hopeful that she’ll become more verbal at home. I do as her speech therapist suggests and attempt to make her use words for what she wants…but she is apparently more stubborn than we are, because we give in long before she even attempts to speak. God give us patience and strength to deal with this willful child~

     At school, Little A’s teacher says that she is very social and loves to sing and dance. Sing? Our daughter? We’ve never heard her sing.  Scream, yes.  Sing? No. But I hope to, maybe during the Christmas holiday:-)

     Some of you reading this might not know this, but it is recommended that children with Down Syndrome see a geneticist. Little A has seen one every year since her birth, except for this year.  She was supposed to see her on December 10th, but I cancelled the appointment.  I don’t mind taking her when she has other appointments in Fort Worth, but I didn’t want to drive the hour and ten minutes there for no other reason than for a geneticist and student researcher to take measurements of my child, play with her to evaluate her motor skills, and talk about how she compares to her DS peers.  Honestly, I don’t really care.  

     I have been thinking a lot about her being in a classroom with only other special needs kids as classmates, and I’m thinking that I don’t want that for her next year.  There are a couple of schools that I have been researching–one in Frisco and one in Dallas–that are inclusive.  The Ashford Rise School of Dallas is located inside the Moody Family YMCA in Dallas and is approximately 40 minutes away from where we live.  The school is for children with Down Syndrome, with 30% of the student body composed of “typical” kids.  It is quite pricey at $1200 a month (and you pay for all 12 months, even though children don’t attend in June or July), and children of every age are required to attend full-time (Monday through Friday from 7:30am to 3pm). Pediatrics Plus, located in Frisco and where she currently receives OT and PT, offers a few options (full time, part-time, and half-time) with multiple price ranges. It is also less than fifteen minutes away, but has only been open since August and currently only has 35 students in the entire school. 

     For those of you have your children in something other than public school, how did you make that choice? How did you decide on which program to choose? I want Little A to be in the very best place for her, with teachers that will work with her and nurture her and not simply do the barest minimum to meet the special education standards of the public school system.  If you are a special education teacher and are reading this right now, please comment your thoughts below.  What should I be thinking of when considering schools for Little A? What questions should I ask? Thank you in advance for your insight, and as always thank you all for reading this post and following along on my Down syndrome journey~

 

 

 

Mistress of My Domain- Part 2

Mistress of My Domain- Part 2

     October is my favorite month, and not just because it’s my birthday month.  I love Fall~ which brings cooler weather, apple cider, and sweaters.   I love the crisp air, and the changing of the leaves (not that we get that here in Texas, but in Michigan where I’m from it is a sight to behold).  What I do NOT love is the commercialism of the holiday season.  Do I enjoy shopping? Absolutely.  But I don’t enjoy the excessive marketing and advertising on television, online, on the radio, and in my favorite magazines.  

Little A is doing very well at school.  Her teacher and therapists all praise her efforts and the fact that she is repeating so many more words than she was six weeks ago.  This week she begins twice-weekly private therapy sessions of occupational therapy and physical therapy (because, honestly, how much is she really progressing working on PT for 15 minutes once a week?!) I’m optimistic for her, and hoping to squeeze in as much therapy as possible before January gets here.

I’ve ordered what I am hoping are some fun items to spark her creativity here at home: play-doh in various colors; washable finger paints; paint books that only require water and a paint brush; and some construction paper, glitter glue, and shape-cutting scissors.  Let the fun begin! If I do by some miracle manage to actually make any crafts with her, I will be sure to post photos here 🙂

Little A’s school is having their Fall Carnival on the 25th.  I’m excited to take her, I think she’ll have fun, but her daddy is dreading it.  Screaming kids and their parents are his worst nightmare; the older he gets, the more he resembles a Grumpy Old Man. Which he isn’t, at all.  He just really doesn’t enjoy being in large crowds with screaming kids who don’t belong to him. Which, you know, don’t we all avoid that if possible???

This week I am working on my third paper for MSA 698; I also begin my very last class at Central Michigan University.  I didn’t need the class for my degree, but I did need it in order to receive financial aid.  I’m actually looking forward to the class.  It’s called Gender and Generational Supervision, and the professor is the same one I had for my very first class of my MSA degree.  He is an excellent professor, very interesting, and actually expects each of us to attend our online class every week through WebEx.  He is only one of three professors during my entire program that has had this requirement–and it has helped me tremendously in the past. I’ll keep you posted on how this goes.

My mother gave up her pretty little trailer to a family in need and moved back into my childhood home with my sister and her husband and children.  They’ve turned the old living room into a bedroom for her, and my mom is now saving the money she used to spend on rent and utilities for a train ticket down to Texas to see Little A.  This is exciting because, while Little A has seen her Mema on video chat, she’s never seen her in person. 

    My sister and niece will be accompanying her, and they have never seen Little A in person either.  And I haven’t seen any of them in four years, since before Little A was born.  Now I’ve got to find fun things for us to do while they are here 🙂  Maybe by that time Little A will be talking and able to say Mema and Aunt Erry. We’ll see.

Thank you for checking in with our family, and following our story.  More to follow~

 

Mistress of My Domain-Part 1

Mistress of My Domain-Part 1

     I meant to write this blog post back in July, before our family vacation to New Mexico; then I thought I’d write it a couple of days after we arrived in New Mexico; the week we came back home after our vacation turned out to be busier than I anticipated, so no blog post that week, either. So now here I am, typing what should have been written months ago…the milestones that Little A has reached, that she has worked so hard for.

It has been six weeks since we’ve used Little A’s g-tube.  She has eaten enough food and has drunk enough liquids (V8 juice and water) that we no longer need it!!! We never thought the day would come when she would no longer need her g-tube (it has certainly taken three long years!), but her GI doctor has agreed to remove it in April–provided she is gaining weight and continues to drink a minimum of 20 ounces of liquid each day until then.  We. Are. Ecstatic. Never give up hope, because just about the time that you do…miracles do happen 🙂

And speaking of miracles~~~~Little A has graduated from feeding therapy to speech therapy! Which also means she will be switching therapists.  Her new therapist is well-versed in the use of technology to assist children with their speech, and is working with our insurance to obtain an ipad and software to help Little A learn to talk. I am excited for her–she’ll finally have a way to communicate:-) 😉 Maybe now she won’t scream and hit and scratch out of frustration…

A is also scheduled for evaluations at a new place called Pediatrics Plus in
Frisco, Texas, for occupational therapy and physical therapy.  I’m cautiously optimistic that this will be a good thing for her.  She’s been in school for two weeks, and she’s only received physical therapy twice (OT and ST not at all).  I’m frustrated because her IEP says that she will receive OT and PT twice a week and ST once a week.  If this in not happening, I need to speak with her PPCD liaison.  Not really in a big hurry to do that, as it’s only September and I need her on my side!

I am a little embarrassed to admit that I was unprepared for how much public school costs.  It’s not “free”. Between supplies (a list of which I was given at the start of school), PTO membership, our contribution to her class party, paying for her participation in the schools’ Fun Run, and buying her a t-shirt for Spirit Week, we’ve spent $300.  And it’s only the first month!!!! Nobody warned me about this.  It certainly wasn’t like this when I was in elementary school. 

Today I spent an hour switching my Amazon Smile account to benefit Little A’s elementary school; I downloaded the Shoparoo app and selected her school as the recipient; I downloaded the Box Tops for Education Bonus app and selected her school as the recipient; I switched my Kroger Community Rewards recipient to her school; and I donated an extra $20 do her class party because there are only four other kids in her class.  I feel like maybe I need to open a savings account for her school expenses.  And volunteer to chair the Fundraising Committee to raise more money for the school so that parents won’t go broke trying to give their kids a public school education. 

In other news: I am twelve weeks away from graduating with a Master of Science in Administration from Central Michigan University (FIRE UP CHIPS!).  I cannot believe that I am almost finished.  It’s been a long three years. Now I’m worried that I won’t find a job after graduation and will not be able to pay back my student loans.  The only debt I have is my student loans.  Anyone else in the same situation? I need to double my efforts to recruit customers for my skin care business~ the products we offer are truly wonderful! My skin has never looked so good, and it’s only been seven months.  If you’re curious about these products and would like more information, visit my business page

Thanks for catching up with us, and I vow to write another post soon 😉 

 

 

Summer!!!

Summer!!!

     Little A attended school for four weeks~the first two weeks were rough (she cried every time I left her, and cried on and off the entire three hours she was there) but her last two weeks went VERY well and her teachers were very positive about her growth.  We are attempting potty training, but only because they started it at school and I am trying to continue it here at home.  I am failing, as she carries her potty into her bedroom and sits on it in front of the mirror (cute, but telling), but may give it up until after this house sells and we move into a new one.

     Little A had her six month appointment with her GI doctor and the GI dietician two weeks ago.  She is doing so well eating that they agreed to stop tube feeds for six weeks.  As long as she doesn’t lose weight, we may be able to continue past the six week mark.  We were told that she has to feed 100% percent orally for a minimum of one year before they will consider removing her g-tube.  How exciting!!! At this time next year she could be tube-free!!! She had an ear infection last week and is just now getting her full appetite back.  Still working with a feeding therapist on drinking thin liquids, but she’s almost there.  So proud of how far Little A has come this past year 🙂

My stress fracture and torn ligaments are healing nicely, so I’ve started taking Little A back to The Little Gym this week.  She seems happy to be back there, and actually participated and allowed herself to be used for demonstrations of a front roll and wheel barrows.  I was pleasantly surprised and excessively proud of her, and happy that my little girl is getting stronger and more independent.

     I do not think of myself of an activist, but I have been advocating for the DS community more this year than in the past.  This week, at the urging of a friend and mother of a daughter with Down syndrome,  I wrote emails to my congressman via the legislative lead for the TIME Act in Congressman Sessions’ office,  encouraging him to sign the Transition to Integrated Meaningful Employment (TIME) Act. 

    This Act is important because it would phase out special wage certificates over a six- year period that allow employers to pay individuals with disabilities sub-minimum wages, sometimes as low as thirty cents per hour.  It will also help pave the way for equality in the workplace for people with Down syndrome and other disabilities, many of whom work in settings that fail to prepare them for integrated employment in the mainstream economy.  If you live in Texas, please consider supporting this effort by sending an email of your own to: meghan.schmidtlein@mail.house.gov

In other news, our home renovation project is almost complete, and a photographer is coming next week to take photos for our sale listing.  I will post the renovation photos in my next blog post, but leave you with these photos from the past two weeks.  Thank you for following my Down syndrome journey~~~