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321 Let’s Count!

I just need to be up front: I’M NOT A HUGE FAN OF MATH! Add to this the fact that students with Down syndrome often struggle with the abstract idea of numbers, and we’ve got a tough problem to solve. 

But one of my recent posts “Teaching Your Child with Down Syndrome to Read,” was so popular that I thought I should share a similar approach to teaching early math concepts. All of this information is from two programs that I learned about at the National Down Syndrome Congress Convention and other conferences I’ve attended. Most of the material is free, so in the end it’s just about finding the time to incorporate this into your child’s day.

Related: Teaching Your Child with Down Syndrome to Read

Here’s what we know about math and students with Down syndrome. There’s less research regarding this topic compared to literacy and students with T21. We do know that you can teach these students math in the same way you teach it to typical students, but it needs to include “smaller steps, more repetition, more guided practice and lots of visuals.” That’s according to Orange County Learning Program Director, Dana L. Halle.

Math sense equals INDEPENDENCE!

Just like literacy, math can open doors for individuals with Down syndrome. But unlike my typical children, who seem to just figure out how to do simple counting and patterns on their own, Troy has needed a lot more guided practice. You will likely have to consciously teach concepts like “more than” and “less than.”

There’s a benefit to starting early and often. “This doesn’t mean 3 times a day everyday. It just means often enough that it becomes part of what they expect. So they don’t forget what you’re teaching and you have to start over again,” says Halle.

So, where do you we start?

With Troy I use Sue Buckley‘s one-to-one correspondence method, which includes keeping the objects the same. This means you want to throw out those counting visuals that has 1 elephant, 2 balls, 3 flowers, etc. Buckley argues the changing objects are too confusing for beginning counters.

Related: 4 Tips to Help Teachers Include Students with Down Syndrome in the General Education Classroom

We literally started one-to-one correspondence with Troy using black dots–simple, unmistakeable. Now Troy is using Buckley’s method with his favorite food. YES, food is imperative in teaching counting in our house (LOL)!

Like Halle encourages, we try to incorporate simple math sense into our every day routine. Troy counts the stair steps, the buttons on his shirt, the number of plates at the table, while we clap to music, etc. Troy is starting to understand that counting isn’t just memorizing the words 1 through ten, but instead that each number represents a specific amount of objects. It took us 2 years of counting and lots of one-to-one correspondence practice to get to this point.

What comes next? 

Patterns worksheet from LP Online

Other early math skills include shapes and patterning. Troy has mastered shapes names and sorting through continuous repetition, but patterns are much more difficult. Understanding what comes next is a very abstract thought. We’re starting simple. You can download free pattern worksheets like these from LP Online with a guest login.

I always forget to print new pattern sheets out, so again FOOD works better for us. Check out Troy below doing a simple ABAB pattern with his favorites: blueberries and Cheerios a.k.a O’s (disclaimer: let me apologize in advance for my 2-year-old crying in the background…REAL LIFE here people! LOL!)

With all this conscious practice, Troy will be prepared for math lessons in kindergarten. He’s still behind his typical twin brother, but he has a basic understanding of the earliest math skills. Luckily, we have one more year to continue to practice.

If your child is ready to move on to the next stage of math sense, I would start with Down Syndrome Education USA’s “Number Skills for Children with Down Syndrome (5-11 years)“. Also, I bought a Numicon system for Troy, but have yet to start this skill. It’s a great visual way to make numbers real. Check it out below and here.

How do you teach math sense to your child with Down syndrome? Tell me about your triumphs and challenges below!

 

 

 

 

 

 

 

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Deportation Orders Would Leave U.S. Teen with Down Syndrome Without Mother

UPDATED as of Friday, November 24th at 5p.m.: Sami’s Sister says their mother, Fatiha has been granted a 30-day extension so the Immigration and Customs Enforcement’s acting director for our district can review the case. This means phone calls to your Congressman are even more important. Find your Congressman’s phone number and a script of what to say in the link below.

This Thanksgiving may be the last one for 15-year-old Sami with his mother’s cooking, love, and complete devotion. After 21 years of living in the United States Sami’s mom, Fatiha Elgharib, is set to be deported back to Morocco on Monday.

“Sami doesn’t understand what’s going on. I keep telling him I may have to go away, but he sees me here with him, taking care of him. He has no concept of time or the future, and what impact that has on him,” explains Fatiha Elgarib. The current U.S. Administration’s “silent raids” have also not taken into consideration the negative impact and hidden cost of pulling families, like Sami’s, away from each other.

Like many people with Down Syndrome, Sami has multiple severe health conditions, including congenital heart malformation, severe sleep apnea, and hypothyroidism. Sami is nonverbal, has had multiple surgeries, and requires round-the-clock care. Fatiha is his primary caregiver.

Find out how you can help Sami below!

If You Live in Ohio, You Can Call Representative Mike Turner and Asked Him to Stop Fatiha’s Deportation. Click Here to Find Out How to Contact your Congressman.

Although I’ve heard about recent controversial deportation stories, Fatiha’s really hit home for me. She has a son with Down syndrome, and lives in the same Ohio city as I do. When I learned about her fight to stay in America, I knew I had to meet her and her son. I visited their home the day before Thanksgiving. Fatiha was visibly shaken and a had permanent expression of worry on her face.

Fatiha, her husband and two daughter’s came to America on a work visa in 1996, and have been trying to gain legal residence ever since. You can learn more about the legal battle and how things went downhill after the terror attacks of 9/11 here. “There’s terrible poverty in Morocco; no chance to find a job. I could never take Sami back there. With his multiple health problems he could die. He would have no rights. I’d have to hide him away,” Fatiha describes. If she is forced to leave on Monday, Sami (who is an American citizen) will be left without his primary care giver.

Related: Down Syndrome in Africa: Hidden in Plain Sight

Sami’s second oldest sister, Sara, told me she will likely have to stop working full time to care for her brother, since her father has the most secure job, her oldest sister has a family of her own, and her youngest sister is still in school. She’s especially nervous because her legal status is likely to be in limbo as well.

“What is happening is not about protecting American communities—my 15-year-old brother, a citizen by birth, is about to lose his main source of care and support. While I am a Deferred Action for Childhood Arrivals (DACA) recipient, my status will soon be in limbo, too, since the administration revoked the program. And then what will my brother do? And what of the communities that my sister and I are enmeshed in, that we’ve contributed to? People make up communities, not their papers. I was 5 when I came here. I went from kindergarten through high school here. This is my country, these are my people,” says Sara.

Sami with his sister, Sara, and mother, Fatiha

Related: Read Sara’s Perspective, “Is My Story Being Erased?” 

Another local resident, Shannon Sutter, says she met the family years ago when her own son with Down syndrome was very young (Sami and her son are the same age). Her oldest son also goes to school with one of Sami’s sisters. She says the current administration’s push to fulfill campaign promises is hurting honest, hard working immigrants. “I am all for sending trouble makers back to their own country, but this mother is NOT a trouble maker and shouldn’t be forced to leave. Unfortunately, because people only hear that she’s here illegally and don’t know the whole story (some basing their opinion on hearsay or rumors), many think she made her bed by not actively pursuing citizenship and have no sympathy for her situation,” Shannon Sutter says.

The family has had four lawyers in the past 21 years, and have spent a small fortune trying to gain citizenship legally. “This has come from nowhere. We pay taxes, I have a driver’s license and a bank account. I’ve never committed a crime or even have a speeding ticket,” explains Fatiha.

A statement by the Immigration and Customs Enforcement (ICE) states “Over the last decade, Ms. Elgharib’s immigration case has undergone exhaustive judicial review at multiple levels of the nation’s courts… (which) have uniformly held that Ms. Elgharib does not have a legal basis to remain in the U.S.” U.S. Congressmen in the past have interceded to help the family.

The Ohio Student Association plans to have more than a hundred people at the John Glenn International Airport in Columbus, Ohio on Monday to protest the deportation. Find out about the protest here. And what is to happen to Sami and his family if Fatiha is in fact deported?

When I asked the family what the Down syndrome community could do to help support Sami, they said respite care would be the most helpful. Sami has multiple appointments every month, as well as the logistics of caring for him before and after school.

If you are interested in helping Sami please comment below or message me, and I will get you in touch with his family.

 

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The Value of Down Syndrome

What’s the value of Down syndrome?

Can you put a price on wasted pain?

Parents dreamt of a “perfect” baby, but are handed the answer to life’s true gain.

What’s the value of Down syndrome?

Can you put a price on perspective?

What often seems like a curse, turns into a blessing in the disguise of beautiful almond shaped eyes.

Related: Open Letter to My Twin Boys, One with Down Syndrome, on Their 5th Birthday

What’s the value of Down syndrome?

Can you put a price on the fight?

You become an expert on medical conditions, laws, and inclusion, that keep you up at night.

What’s the value of Down syndrome?

Can you put a price on community?

Joining this exclusive club, the #luckyfew, dashes fears and helps build such unity.

What’s the value of Down syndrome?

Can you put a price on empathy?

You remember your indifference to difference, and realize how your life before him was empty.

Related: What I Should Have Asked When My Son was Born with Down Syndrome

What’s the value of Down syndrome?

Can you put a price on happiness?

You can’t explain fully how such imperfection could make you happy, but looking at us it’s obvious.

Whats the value of Down Syndrome?

Can you put a price on gratitude?

Thank you Troy for being you. For showing us the way. We love you, little dude!

How are you grateful for Down syndrome? How does your loved one with Down syndrome bring value to your life? Share your story below. 

There is a whole tribe of mamas out there who also feel this way about their little ones.  They too are Thankful For Down Syndrome.  Here are a few other bloggers who will tell you why.

Dawn is a homeschooling power mom of six. Her youngest, Cedar, rocks an extra chromosome.  She began her blog Cedar’s Story to change perceptions of Down syndrome. She shares hundreds of diagnosis stories from around the globe, in hopes to show parents that they are not alone and Down syndrome is beautiful.

Read About Her Thoughts on Thankfulness

Be sure to find her on instagram @CedarStory

 

 

 

 

 

Trista and her beautiful Bernadette are showing the world that they are thankful too Trista blogs over at TristaPark.com and says “I created my blog is to process through the journey. The prenatal diagnosis, the heart surgeries, life in general. It’s been a really good outlet for me to process all the emotions and events especially those of this last year. And through that, I hope to encourage other moms with kiddos with special needs that they are not alone and all the feelings are ok!”

READ HER THANKFUL POST HERE

Be sure to find her on Instagram @mrs_t_park

 

 

 

Joy has a unique perspective here too, she has 2 biological children who BOTH have Down Syndrome.  Both Rudy & Desi show their family joy and that God has a purpose for all of us.  Joy and her family also have a passion for homesteading and you can find all of her inspirational posts at The Beanpost Farmstead.

 

READ HER THANKFUL POST HERE

Find her on Instagram @beanpostfarmstead

 

 

 

And lastly…take a look at these beauties:
https://youtu.be/Nhz7_-xdlJc

 

 

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The Immortal Mom: Why I Can Never Die

I can never die. Literally. Not even of natural causes or old age. I’m convinced I must live forever, and not because I have some fascination with vampires. I mean, technically I would be happy to pass on at some point, but it would have to be the right moment.

I’m sure most moms, especially moms of young children, have this thought. We must keep it together until our children are grown and can get along without us. But this thought of forced immortality seems to grow exponentially when you have a child with an intellectual disability. Will these thoughts ever go away as my son, Troy, who has Down syndrome gets older?

Of course, the goal of motherhood is to work yourself out of a job.

This is no different when you’re a mother to a child with Down syndrome. Still, there are many more hoops to jump through to reach that goal, and even if you do your best your adult child will likely still need a lot of support.

Related: Class of 2031: Yes, My Son with Down Syndrome Can Go to College

Parents are the expert of their child. No one will advocate for our child like we will.

No one knows Troy like I do. The intricacies of a life with my son are endless. Only I know when all his therapy and medical appointments are, and exactly what is said and done in each one since birth. Only I understand every phrase he tries to speak and the made up signs he uses to get his point across. Only I know all the latest and greatest when it comes to Down syndrome advocacy and education, and how Troy would benefit.

You might ask, where’s the father? My husband actually is a Troy expert in his own right. As a medical doctor, he knows all of Troy’s medical history better than I do. He attends especially important medical appointments and all surgeries, to advocate for the best care. He helps me decipher the doc talk, and particularly confusing treatments or diagnoses. When it comes to Troy’s medical care, I would be lost without him.

Troy with Daddy

Thankfully, Troy is a really healthy fellow. His biggest challenges will be social and educational, which are firmly planted in my domain of power. As a former educator, and current COPAA Special Education Advocate it will be me who steers Troy to future independence. It’s a lot of pressure!

Related: How Having a Son with Down Syndrome Pushes Me to Be “That Mom”

I’ve even wrote a posthumous letter to Troy’s future IEP team, because I will never cease to be one of the most important members of his IEP Team. Not even over my dead body, thank you very much. You may think I’m crazy, but no one is going to fight for full inclusion with proper supports like I will. No one believes that Troy should be included with his typical twin throughout his educational career like I will. No one is going to pre-teach, post-teach, and snoop around at school to make sure his educational goals are met like I will.

Check out my Posthumous Letter to Troy’s IEP Team Here.

Of course, I realize life is too short and unfortunately no one gets to decide how long they stick around. So, the only thing that quells my anxiety surrounding this topic is planning and teaching others to advocate for Troy. We have a special needs trust, a will, a regularly updated “letter about Troy” attached to that will, an ABLE account, and pretty soon we’ll sign my husband’s posthumous military retirement income over to Troy in a trust.

Related: Why Your Child with Down Syndrome Needs an ABLE Account

Beyond the financial planning, I do a lot of soft planning. Like the posthumous IEP letter, I also talk to my husband, and all our immediate relatives about what Troy is doing now and what short and long term goals we’re working on. Lastly, I talk to Troy’s typical twin often about including Troy. Although he’s only 5-years-old, I know he and their 2-year-old sister will likely be Troy’s advocate longer than any other person. I believe it’s imperative that I plant the seeds of kindness, inclusion, and advocacy now, so that Troy’s siblings can naturally and willingly step into my shoes when I’m gone.

Please tell me that I’m not alone in these thoughts. Although dark, I feel like these feelings are important to write down and plan for. Tell me what you think below.

 

 

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Dear IEP Team

The following letter is a pre-planned posthumous letter to my son, Troy’s IEP team. The context of the letter can be explained by reading The Immortal Mom: Why I Can Never Die.

Dear IEP Team,

Thank you for your tireless efforts to ensure Troy receives the best educational career. One that prepares him for college or a career and independent living. I wish that I could be there to advocate for my son. To watch as he meets his ambitious IEP goals, fret over stalled progress, marvel at him making new friends and learning grade-level content, and nervously laugh as he gets into a bit of mischief.

Unfortunately, God had other plans. So, I am writing to you in hopes that my educational goals for Troy are carried out in his Individualized Education Plan. When I wrote this I had no idea when or how I might pass, but I knew then that I am my son’s best advocate. If I was there my plans would be much more detailed, but as it stands I hope these broad goals are used as guidance to create an ambitious, supportive, and fluid plan for Troy.

  1. Troy should be present at every IEP meeting, and should start advocating for himself in Middle School.
  2. Always Presume Troy is Competent! It’s the least dangerous assumption.
  3. A COPAA trained advocate should be present at every IEP meeting, and should have full access to Troy’s records.
  4. Troy’s teachers should receive the support they need through set planning time and professional inclusion training courses.
  5. Troy should have a one-on-one aide or his classes should be co-taught. The one-one-one aid or co-teacher should get the same training as his general education teacher.
  6. Troy should learn to read  and understand what he reads using proven methods like Orton-Gillingham.
  7. Troy should learn functional math using proven methods.
  8. Troy should get Speech and OT pushed into his general education classroom throughout his elementary school years; if not, beyond.
  9. Evaluations and assessments should never be used for placement. General education is the least restrictive environment.
  10. Troy should access grade-level content at his own level using appropriate modifications.
  11. Troy should get the behavior supports he needs if behavior problems are preventing him from learning.
  12. Troy should stay in a general education setting at his neighborhood school 70 to 80% of each day.
  13. Troy should stay with his typical twin throughout his educational career.
  14. Troy should not do any cleaning or functional life skills type tasks, unless his typical peers are also doing the tasks.
  15. Troy should work towards a general diploma.
  16. When in doubt, ask yourselves the following question: “How is this specific IEP goal helping Troy be ready for college, career, and independence?”

Thank you for taking my posthumous wishes into consideration. Troy’s future depends on you carrying it out with fidelity. I appreciate all of you!

Sincerely,

Courtney

Troy’s Mom