Milestones and Down Syndrome: Hurry up and Slow down

August 1, 2018 by Dawn@cedarsstory.com 4 Comments

Milestones and Down Syndrome, something nearly every parent on this path Googles.

Once parents use the almighty Google, Milestones and Down Syndrome should be listed right next to the verb, patience.

These milestones are a concept I never gave much thought to with my typical kiddos. I mean, in a vague sense I knew about when they would start to babble, sit, crawl and walk, but I wasn’t hyper sensitive to it. When one of my children didn’t walk until she was 14 months old, I didn’t worry, I just knew it would come eventually. When one of my children didn’t talk much until almost 2, again, no worries I knew it would be fine.

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Speech Therapy Tips for Reading

May 25, 2018 by Guest Post 8 Comments

Speech therapy tips for Reading to your little one.

The Speech Therapist’s Tips For Reading

BABY STEPS

My favorite books to start with are those that have 1 picture per page. The very best are the ‘touch & feel’ books, such as Baby Touch and Feel: First Words (Baby Touch & Feel), because they encourage interaction from your child. Starting with 1 picture per page allows your baby to focus on 1 concept at a time. You may open the book and say, “Cat,” point to the picture, pet the cat’s fur and elaborate with a “meow.”

Your baby will be completely tuned in to the picture, the word cat, and the sound meow. In that moment you have allowed your little one to store a file called “cat” in their mind that has a picture, a label, and a corresponding sound. That way when they see a different cat and hear the label and the sound, they will store another picture of a cat in that same file. Bravo! It is important to keep your language simple in this phase because we want to meet baby at his or her level. Using 1-2 words or sounds per page when you start is plenty.

This phase is all about teaching. Once your child is familiar with the book (i.e. after you have read it to them several times) you can expand. Your little one will learn to “turn the page,” which is another great way to include them in the activity in this phase. You can also start to teach identification. You can ask your little one to “find the dog” and help them touch the dog picture instead of the cat picture. Your little one may even start to imitate sounds (i.e. woof) or labels (i.e. dog).

INTERACTION IS KEY

Books with built in interactive features are wonderful! That is, Velcro books, felt books, books with moving pieces, pop-up and/or peek-a-boo books, etc. These books are motivating and engaging for little ones.

Motivation is important because it promotes joint attention, which is necessary for learning. Joint attention occurs when your child is focused on the task (i.e. the book) and you. What does this look like? It is as simple as your baby looking at the book, then looking at you, and then back at the book. Interactive books do a lot of the work of keeping your child engaged for you. They are full of directions for children to follow (e.g. “Find the…” “Look under the…” “Put on the…”) and promote expressive language as well.

Since your tiny friend will be engaged and demonstrating joint attention, it is more likely that you will hear new sounds and words! Lastly, they are awesome for turn taking. Turn taking is an important skill that we need for play and for language (i.e. having a conversation). Musical books and/or those with sing-song verses also promote increased interaction from little ones! They provide a ton of opportunities for our little ones to fill in the blank (i.e. finish the sentence). When you add a melodic intonation to a phrase, your child is more likely to imitate you. This is because you are inviting the right brain to help in a left brain task, which I like to explain as using 2 hands instead of 1 to carry a heavy box.

FIRST IDENTIFY, THEN LABEL

Our children will be able to identify pictures before they will be able to label them. Identification is as simple as touching or pointing to a picture. You can teach this skill by asking the question (e.g. “where is the car?”) or giving the direction (e.g. “find the car”) and then gently taking your child’s hand and pointing to the picture together. Even if your little one has 0 words, you can work on identification! It is easiest to identify an item when you are only presented with 2 options (i.e. a book with 1 picture per page).

The more picture options that are present, the harder the task will be for our children. Remember, baby steps are important so start with easier tasks and build gradually. Also, it is easier for little ones to identify objects and harder for them to identify actions. Once your child is consistently able to find objects (i.e. ball, car, boy, sun, apple, tiger, etc.) then you can make the task harder by asking him or her to identify actions. That is, “show me the girl who is eating” or “find the lion running” and so on.

ASK QUESTIONS

This may seem like an obvious part of book reading, but it is too important to not mention! It is hard to not get caught up in the wonder of beautifully written kids books with morals and meaningful messages. Sometimes we just read right through without stopping to check in with our tiny friends. I always check focus & comprehension by asking at least 1 question per page. Even if it is a simple WH question (e.g. “What happened?” “Who is that?” “Where did he swim?” “Why is he sad?” etc.)

Asking questions is the quickest & easiest way to make sure that our little ones are paying attention and understanding the words we are reading. Even if your little one is not able to verbally communicate yet – you can still check comprehension with gestures. Simply change your question into one that can be answered by your child pointing to the answer on the page (e.g. “Where is the truck?” “Who feels happy?” “What did he eat?” etc.)

THINK OUTSIDE THE BOOK

Reading to your little one is not always going to be as picture perfect as it seems. Sometimes our little ones do not want to sit, sometimes they want to hold the book themselves, sometimes they only want to turn the pages, etc. It is okay to get creative and use helping tools!

Timers Work: Most phones have simple timers. It is an easy way to help your little one understand that the task is not forever, just until the timer goes off.
YouTube Is Your Friend: A ton of our favorite stories are on YouTube. Your little one may be more interested in acting out the story at first instead of sitting for a book. You can hold the book and read the story along with the video or act it out together.
Double Up: I like to get a second copy of favorite stories for my tiny friends who like to hold & control the book themselves. That way they feel independent and can read along with you.
Objects Can Play Too: I like to match toys & objects to pictures in books when it is appropriate. Often times our little ones do it for us! We will be reading and see a dinosaur that looks a lot like our tiny T-Rex, and suddenly your little one runs away to bring the T-Rex into the room and onto the picture. This is wonderful generalization.
The Stronger The Better: Bath books and board books are the strongest and they can usually withstand drool and/or ripping hands!
As The Speech Teacher, I post daily ‘Pops of Knowledge’ on Facebook and Instagram that consist of facts, tricks of the trade, at home activities, and product recommendations. I believe that the more you know – as a parent or caregiver – the stronger you will be in supporting your little one’s speech, language, and feeding development! To help you achieve this, my focus is on providing you with FUN & FUNCTIONAL suggestions.Related Article: Top 5 Speech Therapy Tips

Molly is a New York City based Speech Language Pathologist and Feeding Therapist. She is ASHA (American Speech and Hearing Association) Certified and trained in the SOS (Sequential Oral Sensory) Approach to Feeding. She received her Masters in Speech Language Pathology from Teacher’s College, Columbia University, and her Bachelors in Speech and Hearing Science from George Washington University. She currently works with the birth-5 population conducting evaluations & providing speech and feeding therapy in NYC. Molly provides therapy in the home as well as in a special needs preschool setting.

5 Lies About Down Syndrome

May 2, 2018 by Dawn@cedarsstory.com 5 Comments

When I heard those words, Down Syndrome, referring to my own newborn son, I reached back into my memory and began pulling forward all the information I could recall. The pieces were disheveled, the files corrupted but from memory, I could recall that it was a genetic disorder, there were 3 copies of the 21st chromosome, there were obvious physical facial characteristics, speech delays and well…I had never carried on a conversation with someone who had Down Syndrome so likely they didn’t have the capacity to carry on lengthy conversations. I had many misconceptions, I had many stereotypes, but I also had some flat-out lies embedded in my subconscious.

Lie #1- My Life Is Over…

I firmly believed, through the surges of salty tears that daily streamed from my red puffy eyes, that life as I knew it was over. I wouldn’t be happy again, I wouldn’t live the life I had come to love, my family would forever be sad and lonely because we now had a child with special needs.

TRUTH: I smile more now than I did just a year ago. I cannot, nor can anyone I have met, look at my son and not smile in return to his gummy grins.

Lie #2- People With Down Syndrome Can’t Carry Meaningful Conversations

Because I had never spoken with someone who had Down Syndrome I mistakenly assumed that there weren’t many articulate thoughts being spoken. I have now had the privilege of speaking with a number of really great people who make me smile, laugh, and WANT to be around them.

TRUTH: Individuals with Down Syndrome have likes, dislikes, opinions, feelings, and thoughts that they would love to express to you if you listen.

Lie #3- People with Down Syndrome are Never Independent

Look no further than youtube or A&E to the show Born This Way to see the possibilities. Not every person with Down Syndrome is capable of complete independence, but more seem to be than previously thought and the numbers are growing every day as we come to expect more.

TRUTH: Each individual should be given the opportunity to prove what they are capable of.

Lie #4- People With Down Syndrome Are A Drain on Resources

There is a need for resources directed at those with Down Syndrome but they are worth it. We are now seeing the amazing benefits of early intervention and high expectations and these lives are worth it.

TRUTH: There are entrepreneurs, public speakers, models, and actors with Down Syndrome who are all giving back.

Lie #5- Those with Down Syndrome Can’t…

Can’t walk, can’t talk, can’t read, can’t write…the list goes on and on. There was a time in the history of the United States, and not that long ago I might add, where mothers were told to put their children with Down Syndrome into institutions and forget about them because they “can’t.” What we now know is that with early intervention they CAN.

TRUTH: They can walk, they can talk, they can do so many things that were previously thought impossible, just give them a chance.

So tell me, what did I miss? What other lies are there out there about Down Syndrome?

5 Lessons About Homeschooling a Child with Down Syndrome

April 11, 2018 by Guest Post 6 Comments

I have shared before that I homeschool my 5 other children and that is my plan for Cedar as well. However, we are not in the trenches of homeschooling my son with Down Syndrome yet so I reached out to another mama who is, and here is what she shared:

My Five Lessons: Homeschooling my Son with Down syndrome

When I think about my son’s elementary school experience, I feel a genuine sense of sorrow; a loss of golden time for my son’s young, developing mind. The elementary school that was to support his early years of individuality, self-worth, wonderment and imagination had failed him.

From Junior Kindergarten to Grade Three, our family life revolved around a “boy and his behaviours and the school team” in search of solutions to support him. I look back now, four years later, and lament: Why didn’t we choose to homeschool Gabriel right from the beginning?

My husband and I were so blindsided by “the duty of inclusion”, that the one person we were trying to help was falling apart. Gabriel would wake up in the early months of Grade Three, sobbing and pleading not to go to school. His educational aide would assure us that he was fine once his day was started in school.

Gabriel was no longer the little boy my husband and I proudly brought to the interview with his Junior Kindergarten teacher many years ago. The boy who sat quietly, reading books, while we struggled to remain composed after her very first question: “Do I have to hide the scissors?”

Gabriel lost those early years. We chose the wrong school for him. We believed the school staff’s answers. We waited for things to get better. We lived in a simmering place of anger and angst. But all of this led to a gift that has given our son a second chance to live out his own best possible life as a real person. He no longer contends with labels and limits.

In November 2013, my husband and I began to homeschool Gabriel. And so my learning has been ongoing. This is what I know is true for our family and most importantly for our son:

Inclusion is not an idea or goal to be attained. It is an ongoing practice in everyday life. Gabriel is not isolated by a label of Down syndrome, but instead is an active partner in our homeschool and neighbourhood community. No longer shadowed by an adult who dictates his behaviour and social place among his peers, he can grow in his own light and seek out companionship where he is comfortable. He is included and empowered in everyday life.

Gabriel is a visual learner and I have the time and emotional space to strew and to teach to his needs. We live in Ontario, Canada, and homeschoolers are fortunate to not be restricted by institutional rules. We don’t work with our school board (although our family still pays taxes to our board) ; however, that option is available.

The luxury of Gabe’s learning ability is a gift. We can master a skill before moving onto another. There are no “precedents or antecedents of behaviour” to be discussed. He has been growing into a responsible person who is assured that it is okay to be right where he needs to be educationally. He is happy now and it shows.

There is always going to be ignorance about Down syndrome and it is NOT Gabe’s goal to raise awareness. Even in the homeschooling community, there is a segment of population who are not comfortable with a person with a disability and who have may be holding onto misperceptions. (Recently, a mother told me that she explained to her children that some people with Down syndrome cannot I corrected her but it was too late. She had already told her children.)

My husband and I welcome questions about Down syndrome; however, we most wish for peers to talk to Gabriel. Like any community setting, we strive for our son to be seen as a person first and foremost.

I am a good mother. I lived most of my early motherhood years in conflict about my abilities. I have learned the importance of being an advocate; however being a mother who listens and nurtures her child is most important in my own education.

As a homeschooling parent, I still battle with self-doubt and self-criticism, and I have good and bad days. I have waded through a pile of mistakes: choosing curriculum, social homeschool events, being consistent with routine and keeping my frustration in check. But I own it, and I move on. Life is not a Hallmark card and neither is homeschooling. It takes more “human” than I’ve ever given, if that makes sense. My son and I are much better people for it, too.

My son is not meant to be a rocket scientist and that’s OK. And chances are, your kid won’t be a rocket scientist either. I try to take Down syndrome out of the equation of “What do you want to be when you grow up?”

I grew up in a highly dysfunctional home and truth be told I cannot remember ever wanting to “be something”. I was in survival mode. I believe that if Gabe was still in the school system, he would be in survival mode and not growing into a person. And I believe that many kids with intellectual disabilities are far stronger willed than most neurotypical children only because they are neck deep in trying “to fit in” – or to survive as best they can in a social pool brimming with “expectation”. This word is very two faced. It can either be used for against or for someone and often the lowest of expectations are assigned to the learning disabled.

Gabe loves to take electronics apart but he’s not interested in what the components do to make something work, yet. He won’t participate in group STEM activities when we attend a homeschool co-op, yet. He wants to make videos but he doesn’t want to edit them, yet. He wants to shop for groceries but doesn’t care about money denominations, credit cards or banks, yet.

You see a theme here? “Yet” is our next step when building his skills for a good life. There are a zillion different ways to get to our goals. Our journey is slower, more relaxed, but we will get there. And whatever he chooses to be when he grows up will be his own choice because he will be independent and not in survival mode.

Gabriel is living a life of inclusion, where he can safely learn what he needs to learn without adults pushing their own perceptions about Down syndrome into his education. He is greatly loved by family and friends. Gabe is nurtured to be the best person he can be in this life. I wish I had known all these things before making the decision to homeschool my son. As a dear friend in the Down syndrome community always says, “Forward with hope.”

Gabriel is the 12-year-old son of Lianna and Terry Koerner. In November 2013, after four years of an unsuccessful relationship with elementary school, his parents decided to try homeschooling. It was, and continues to be, the best decision for him and his family. Gabriel enjoys gymnastics, cooking, sport activities, exploring electronics and karaoke with friends.

Be sure to follow along the adventures of Gabriel and his mom on Instagram @threeonthe21

A Speech Therapist’s Feeding Tips (for children with Down Syndrome)

March 6, 2018 by Guest Post Leave a Comment

A Speech Therapist’s Feeding tips for Children with Down Syndrome

Can I just shout from the rooftops that I LOVE Molly over at TheSpeechTeacher? She is the most down-to-earth, sweet and knowledgeable speech therapist I have ever chatted with. I am only saddened by the fact that she lives states away from me and I cannot then employ her as my very own personal therapist for Cedar. However, second-best, is learning from all of her great advice that she offers on her website, Instagram and Facebook pages, be sure to check her out (by the way, her website is the most beautiful, go see it here)

FINE PRINT Affiliate links included and cost you nothing but help to maintain this site when you purchase through links. The information provided by the Speech Teacher is her advice on practical feeding for your child, use common sense.