Category Archives: Trisomy 21

Things People With Down Syndrome Are Tired of Hearing – video

August 3, 2016Parenting, Trisomy 21Avivah

Last night we attended the graduation exhibition for dd19, who today will be graduating after three years of college! (More about that in another post!) Also in attendance was the sister of a graduate, a young mother who has an infant with T21. Dd19 happened to have Yirmi (4) with her when she was chatting with her, and they were very encouraged just seeing what a child with Down syndrome actually looks and acts like – not at all like the misconceptions that are typically thrown around.

There are unfortunately a lot of limiting and false beliefs about what Down syndrome is and what it means for the life of the person who has it. I loved the following clip, sent to me this morning by a blog reader, because it’s so real – people who themselves have Trisomy 21 responding to common assumptions regarding Down syndrome.

Our expectations are that our four year old son who happens to have T21 will need a bit more time and support but that’s he’s fully capable and will be able to do the things that most of us can do. Just like any other child!

Avivah

Gemiini – an amazing resource for kids with communication or speech delays

May 15, 2016Homeschooling, Parenting, Trisomy 21help for apraxiaAvivah

Since I like to try things out before recommending it to you, this post has been a looong time in coming!

My three year old has a speech processing delay called apraxia. Apraxia in simple terms means that although the child knows what he wants to say and understands everything, the message gets scrambled somewhere in transmission between the brain and mouth.

This means that a child with apraxia has to work much, much harder to speak and it takes much longer. I suspected ds3 had apraxia when he was 18 months, but the speech therapist told me he didn’t. At his 2 year old speech assessment, I received a letter in the mail a few weeks after our in-person meeting and discussion (when nothing was mentioned to me) and it was only then that I saw he had been officially diagnosed with apraxia.

Based on what I had learned about apraxia I knew that weekly speech therapy was likely be inadequate to help ds3 learn to speak well. So when two or three months later in December 2104 later I learned about Gemiini, I was cautiously hopeful.

Gemiini is a video modeling program designed to help children with autism that was getting breakthrough results. What was exciting to me was that someone on a Down syndrome group shared that she had started using it a month before with her child with T21 who didn’t have autism and was seeing significant improvements.

I took a month to look into it before signing up, and began using Gemiini with Yirmiyahu in Jan. 2015. We’ve been using it since then on a regular basis. I’ve been meaning to write about it for quite some time, but now that I just re-registered for a new subscription figured I shouldn’t keep you in the dark any longer!

Gemiini has a huge video library of words, phrases, social situations, etc that your child can watch repeatedly. This is really important for a child with a speech delay or social delay, as it gives them the opportunity to see what the word means, how it’s used and there’s as much repetition as your child needs. It’s incredible to me how many aspects there are to this program (eg learning to read) and how many ways it can be used, in different situations and at different levels ranging from beginner to advanced, for people of all ages.

When we began Gemiini, Yirmi had almost no sounds. His sign language and ability to act out what he wants to tell us is excellent – someone in the park said a few days ago she’s never seen such a young child able to so clearly communicate without speaking – but spoken speech is obviously important. Soon after we began using Gemiini, I saw him moving his lips as he watched the videos, trying to copy the word he was watching. Since then he’s begun saying simple one syllable words and word approximations, which is very exciting.

Generally screen time should be limited or even avoided for young children, but since Gemiini is actually helping to heal the brain, it doesn’t have the negative concerns associated with screen time. I use Gemiini with Yirmi for up to an hour a day, up to six days a week.

I spoke with a blog reader a year ago and mentioned we were using this program. She told me of a friend with a child with Trisomy 21 who was nine years old and nonverbal, and asked if the mother could contact me. That person did call me and I told her about this program. Two weeks after starting Gemiini she called me back , and with emotion told me her daughter – who they assumed was unable to speak – had begun to talk.

Gemiini is a company with a huge heart and sense of mission. It began with a mother of a large family being told her three year old twins were autistic and that one was beyond help (they’re now about 19 and in college). She spent endless hours researching a way to help her own children and this video modeling approach now helps many, many children.

The program is a paid monthly subscription, with an option to try it out for a month and even have a free 20 minute consultation with one of their representatives to discuss how to use the program for best results for their child’s specific needs. They don’t want children to be denied this help because of financial constraints and finances and as such offer scholarships to make the program accessible to everyone.

In the word of speech therapy, this program is a huge advance and for me and many other parents, offers tremendous hope. It can be used in conjunction with a speech therapist or as a stand-alone program. (In case you’re wondering, I don’t receive any compensation or benefits by mentioning this.)

The website is Gemiini.org and you can get more information there!

Avivah

Does how you treat your child affect if he is ‘high functioning’?

March 16, 2016Parenting, Trisomy 21high functioning Down syndromeAvivah

In response to my last post, a reader asks:

“unfortunately, not all Down children are so beautiful and cute. I mean, you can hardly even tell that Yirmi has it! What would you tell a mother who’s child is not as charming?!”

A person’s value isn’t based on how charming he is! Yirmi being who he is now didn’t keep the doctors after he was born from repeatedly asking me why I didn’t do the prenatal tests that would have allowed me to abort. So cute or not, to them he had no more reason to exist than any other child with T21.

I would continue to say that a child is a child and deserves to be loved and valued for who he is, as he is. Every single person is beautiful and a genius in some way and that means all children – with or without Down syndrome. We need to broaden our mental picture of what beauty is. Is there a mental ceiling on what a child should look like or act like for his parent to be willing to embrace raising him?

(To all of those reading: please consider changing the way you refer to children with Down syndrome in a way that defines them first and foremost as a person – Yirmi is not a ‘Down child’ and neither is anyone else who shares his chromosomal makeup. Here’s something I wrote in which I explained my perspective. As the wise Horton the elephant of Dr. Seuss fame says, “A person’s a person no matter how small.”)

Another reader responds:

“I’d also add that what is normally seen as a reason for despair in parents of “different” children is often actually a consequence of it… That is, Yirmi probably presents as someone who hardly looks different just because the whole family always accepted and appreciated him for who he is rather than let the difference create a distance. In times past, children with conditions such as T21 or autism would be locked away and ignored, so of course they’d never realized any of their potential. It took inexcusably long for medical profession to realize that the same would have happened to neurotypical individuals if they were placed in same circumstances.”

I completely agree with this sentiment. The more you treat someone like one of the group, the more they act like one of the group.

I did a LOT of thinking for the first couple of days after Yirmi was born – all I did was think, actually – and one thing I felt in my bones in those early, early days was that as he got older people would look at him and whatever he accomplished in his life and tell us we were just lucky.

Children are unquestionably born with different abilities, but once they’re born I don’t think luck plays as big a part as is generally believed. You work with what you have, you support what you see in your mind even if you don’t see it in front of you yet. If I would have treated him as a child with the limitations I was told he would have, I’m sure he would be very different.

For example, Yirmi didn’t look me in the eye for six weeks. That’s a long time for a newborn – my other kids looked me in the eye the day they were born. So I could have assumed he was autistic (which ten percent of children with T21 are) and become discouraged that I was one of the unlucky parents who got a ‘lower functioning child’. Then I would have treated him with those low expectations and he would have responded as such. Or I could have thought, he has his own time schedule and believe he would do it when the time was right. And he did.

That line of thinking follows all the way through the years when raising children – and this is true of raising any child. They will reflect your belief in them. A parent has to learn to see past the current challenges or limitations and trust the developmental process, especially when your child is on the slower side of the developmental curve (emotionally, socially, intellectually or physically).

Back to issue of social supports. Children with Down syndrome are strong visual learners. If a child spends his days with a group of children with disabilities, behavioral issues and emotional issues, he will copy those behaviors. This is why so many children with T21 have autistic behaviors when they aren’t autistic – because they copy the behaviors of those in their special education programs. If a child is surrounded by neurotypical children acting in a socially appropriate way, that becomes a model for him.

How a child acts is less about his disability (though it undeniably plays a part), and much more about who he is patterning himself after and what is expected of him. Yirmi behaves similarly to his siblings and the other people in his life.

You won’t be surprised that I’m opposed to the routine isolation of children with disabilities in separate classrooms or social situations. Inclusion been shown to be highly beneficial to the child with a disability as well as the neurotypical children in the classroom, and that this is something parents have to fight for rather than an accepted norm is simply horrendous. It’s just wrong on every level -we as a society are creating very limiting long term realities for people with disabilities. It doesn’t benefit individuals, families or society at large.

Avivah

What I would tell a new parent of a baby with Down syndrome and a fun video featuring Yirmi!

March 14, 2016Parenting, Trisomy 21down syndrome adoption, new baby with down syndromeAvivah

Friday morning I got a call from our pediatrician, asking if she could pass our phone number to a new mother who just had a baby with Trisomy 21.

Two weeks before that, a blog reader forwarded an email to me about a newborn baby with T21 who is available for adoption to a religious Jewish family in the US.

Two weeks before that, another blog reader forwarded information to me about a woman in Israel who had given birth to twin boys with T21 who was shattered and devastated.

I gave my number to the doctor for the new mother, was in touch with the contact about adoption for the newborn baby and spoke to the mother of the infant twins.

What would I tell a new parent about raising a child with Down syndrome?

I know, it can feel overwhelming when you get the news. Maybe your mind is racing and you can’t believe that this has happened to you – this is supposed to happen to ‘other’ people. And now you’re the ‘other’ person. Maybe you’re unable to stop crying, maybe you feel that you did something wrong that you’re now being punished for. All of the doctors and staff (nurses, social worker) who spoke to me gave the impression that this was very sad news.

But I want to share with you a much more accurate perspective. It’s not sad. It’s not bad. It just is. Your child has been born with a medical difference, and that feels significant.

But it’s not nearly as significant as you might think. In fact, I would say that the less you pay attention to the diagnosis and the more you connect with him as your baby, the happier you’ll all be.

Here is what I think the most important things are to know in these early days:

Raising a child with T21 is pretty much the same as raising any other child.
He is capable of so much more than you think – put aside any preconceptions of who he is and what his limitations will be. No matter what the doctors tell you, they have no more idea than anyone else what his potential is.
Trust his potential and support his process in the way that is right for who he is, not who you think he should be. He doesn’t have to prove himself.
Most importantly, just love him. You are going to get so much love back. One day you’re going to look back and remember how you cried and felt devastated when he was born, and wish you could redo your initial response to reflect all the joy your child has brought into your life.

****************************

I just discovered this short video that ds8 and ds3 recently made together when I was out of the room. They aren’t supposed to touch my computer without permission but I was glad to have it and am sharing it with you because it’s an spontaneous and unscripted slice of our every day life with a child who happens to have T21. I’d love to know what your reaction to this video is!

********************************

When a child with T21 is born, there’s an assumption hanging over his head that he’s less inherently worthy because he’s different. We presume that having differences is a bad thing.

It’s really not.

But because of this negativity surrounding Down syndrome, parents feel like there’s been a mistake somewhere, something unfair has happened to them that shouldn’t have happened.

There are no mistakes in this world. Your child isn’t a mistake. His entrance into your family isn’t a mistake. You were divinely chosen to receive this child.

Not because you’re spiritually better than anyone else and ‘can handle it’. Not because you are worse than anyone and ‘he is your test’.

He is a child with unique gifts and abilities. He will shift your paradigm of parenting, he will teach you things you didn’t know you needed to know – and my personal feeling is that we won the lottery against all odds when Yirmi was born!

Avivah

See the person, not the disability

November 18, 2015Parenting, Trisomy 21Avivah

This week someone introduced me to another woman, mentioning that I had a special needs child.

“No,” I responded, “I don’t have a special needs child. I have a child with special needs.”

“What’s the difference?” the woman I was being introduced to asked, sincerely puzzled. (The woman making the intro immediately apologized and said she knew better and was sorry to have used that term.)

Honestly, I’m not a dogmatic person. I know this seems like a really small thing. But I simply do not want my child or anyone else’s child labelled in this well-intended but limited way.

So I explained, “My son has Down syndrome – he’s not a Down syndrome child. Down syndrome is part of who he is but it doesn’t define him.”

Ds22 told me he thinks it’s too subtle a distinction for people to make, but I don’t agree. It’s just a matter of nicely sharing a different perspective with people. No one is purposely trying to be offensive or insensitive by using this term. I’ve introduced my preferred term with doctors, nurses, therapists (alternative and conventional) and anyone else who has used the special needs version to me and almost everyone I’ve spoken to has understood very quickly what I meant.

Actually, at this point I don’t usually mention when people meet Yirmiyahu that he has Trisomy 21. There’s really no reason to. Someone will either notice or not.

Despite not being very verbally expressive yet, Yirmiyahu is bright and communicative. People realize he has a language delay; it’s obvious. But it’s interesting how few people realize he has T21. Even in the hospital, a nurse who had been caring for him asked me if it was true that he had T21 – she said she hadn’t realized until it was mentioned in his medical briefing.

Recently after a friend of dd15’s visited, she told me she didn’t like how people treated him after learning he had T21. I suggested she consider not mentioning it anymore. To us, his diagnosis isn’t a big deal and she didn’t think it was significant to mention – to us it’s almost like saying someone has glasses or brown hair except that we’re more proud of him than that!

As soon as her friend heard he had T21, she went from speaking to him in an age appropriate way to commenting to dd15, “Oh, that’s so cute, he pointed at the bird – I think he knows what it is!” As if he suddenly lost a bunch of brain cells and stopped being the engaging little boy she was enjoying before that. If Yirmiyahu had overheard her he probably would have been wondering what happened to her brain cells. Seriously, he’s 3. He understands everything.

The reality is that Trisomy 21 isn’t the problem. It has its challenges for sure, but the real challenge, the biggest challenge, is society and the limited expectations and lack of acceptance there is for those with developmental delays or disabilities.

This is all tied up with the terms people use. When you speak with more awareness of a person having an identity outside of his diagnosis, you’re part of the solution. And it’s so easy to do – a slight shift in how you describe someone and you’ve made the world a place that’s more respectful of everyone!

Avivah

A strikingly different and refreshing idea about acceptance of others

July 21, 2015Self-Growth, Trisomy 21Avivah

Several weeks ago I attended a play called, “Seeing the Beauty in those who are Different”. I really wasn’t sure what to expect and had some apprehensions about attending since I knew it had something to do with Down sydrome and I have a problem with the limited and stereotypical presentations of those with T21.

The two person play was powerful but left me with mixed feelings. The play was followed by a question and answer session with the audience that was compromised mostly of teen volunteers who worked with children with various disabilities. The director who played the main character with T21 led this and his comments were quite insightful.

Afterward I spoke to the director and I shared with him my ambivalence about seeing a person with T21 portrayed in a way that might feed into common social perception. He agreed with me that people with T21 can and do achieve wonderful things and live mainstreamed lives. But, he said, the unfortunate reality is that many people with disabilities don’t have the family support that my son has. He explained the background of the character to me, and said that far from being stereotypical, the main character has a lot of strength and independence – he is living in an assisted living facility, forgotten by his family. He works, buys his own clothes and despite his loneliness, refuses a visit from someone he suspects is doing it out of pity. He has no outside support and yet he maintains a courageous attitude toward daily life.

At the end of our conversation, I asked the director, “How would you sum up your message in this play – to accept others?”

He adamantly said, ” Who am I to accept someone else? Acceptance implies that you’re better than someone else. We don’t say we have to accept someone who we feel equal to and certainly not someone we feel is above us. What I want people to do is look into another person’s eyes and recognize their humanity, and interact with them from that position.”

I was struck by the power of this thought. To me acceptance was a pretty good thing to strive for societally but his comment helped me recognize that I was living with a limited sense of what acceptance really is about.

It was a major paradigm shifter for me that can be applied to many situations that go far beyond the disability community. Really, it applies anytime you encounter a person or idea who isn’t aligned with you and your way of thinking – to see the person and not focus on his actions, and relate to him from a position of respect and honest connection.

How does this idea about acceptance impact your way of looking at those who are different than you?

Avivah

All Lives Matter – Karen Gaffney

July 15, 2015Parenting, Trisomy 21Avivah

Earlier this year a friend told me she cried when she found out that Yirmiyahu had Down syndrome. I asked her why? After all, I didn’t cry. “Because it was so hard.”

That’s what I would have thought before I learned about Trisomy 21, too, but it’s not the reality. That’s a perspective based on very limited information that isn’t globally applicable. No, I don’t have the amazingly sunny personality that enables me to see bad things as good things – I’m a very realistic person. Reality is what a friend of mine with a daughter with T21 told me several years before Yirmiyahu was born: “Down syndrome is just not that big a deal.”

I know it’s hard to believe. Yes, people with Trisomy 21 do have challenges but they also are capable of far more than what is generally assumed to be true. Learning this as a mother of a very new infant with T21 gave me an entirely different perspective and vision.

Below is a talk by T21 advocate Karen Gaffney. Karen herself has T21. Hearing Karen speak is such an encouragement to me and in the TED talk below I think you’ll also appreciate what she has to say.

Avivah

Guess who’s turning three?!

July 4, 2015Parenting, Trisomy 21Avivah

Guess who’s turning three?

Close your eyes and guess!

Can it be?

There are a lot of words the doctors used when they told us about Yirmiyahu’s Trisomy 21 diagnosis.

Most of them were sad. And depressing. And limiting.

There wasn’t one word that intimated to how our lives would be enriched. Not one hint that he would be smart, capable and personable.

There was just one thing I remember them saying that was accurate: “How your child develops depends very much on how much you invest in him.”

Do you know what it means to invest in your child?

Love him as every other child.

Include him as every other child.

Believe in him as any other child.

Did we ever guess what joy was going to become a daily part of our life when this little boy was born?

Even if they had told us we wouldn’t have believed them.

Sometimes words are just inadequate.

Avivah

The countertops arrived and my new kitchen is ruined – expectations, disappointment and acceptance

June 8, 2015Homemaking, Marriage, Parenting, Self-Growth, Trisomy 21Avivah

I haven’t written about my kitchen renovation progress even though the counters were installed a week ago.

The counter is beautiful. And the cabinets are beautiful.

But the shade of the countertops isn’t a perfect match for the cabinets. The cabinets are a pinkish beige and the countertop is a yellowish beige and while that doesn’t sound like a big deal, it’s off. It’s not what I was envisioning.

The loss of a dream can be a very painful thing.

********************

When Yirmiyahu was born and I found out he had Trisomy 21, I accepted it very quickly – in less than a minute. No regrets, no what if, no wishing it would be different.

But most parents go through a mourning period after learning of the diagnosis, because it’s hard to let go of your dream of who your child will be.

***********************

Why was it so easy for me to accept my newborn son had Down syndrome and after a week I’m still struggling to accept my countertops being a different shade than I anticipated?

When I got the news about the T21, it was clear that was the reality and there was nothing that was going to change that. The only option was to look forward and do the best I could to nurture the child I had.

I also have a very strong belief that everything in this world happens as it’s meant to happen, when it’s meant to happen, to whom it’s meant to happen. G-d doesn’t make mistakes and nothing about Yirmiyahu or him being part of our family was a mistake.

But this countertop…it felt like a mistake. My mistake. I have a good sense of what looks right together. This isn’t the kind of mistake that I should have made. Except that I did and how it happened doesn’t really matter.

And – I don’t want to call it grieving because that should be saved for really serious situations – I’m feeling a sense of loss and sadness. I invested a lot into this project because the final vision of what it would look like motivated me. After the countertops arrived, I lost all interest in finishing the kitchen. I wished I hadn’t started it. Better to have kept the old tiny yucky kitchen than to invest myself in a project that didn’t turn out the way I wanted, my mind said.

While I can accept what G-d sends, it’s harder for me to accept a mistake that I made and realize, this is also the way that G-d wanted it.

*****************

As long as I’m wishing I could change the countertops, tell myself that I can’t bear looking at it every day, think how it’s a reminder of my failure – I’m not going to find acceptance. And without acceptance there’s no emotional peace and definitely no happiness.

Acceptance truly is the answer. Acceptance will only come when I can internalize that this is how it is, this is how it’s meant to be and this is G-d’s will just as much as something that doesn’t have any element of human involvement attached to it. It means focusing on what I have, not on what doesn’t fit my image of how it should be.

When I begin to let go of my insistence that something is wrong and realign my vision with the reality that’s now in front of me, it’s freeing. I can focus on what’s right. I have a well-designed kitchen that uses the space well, that’s easy to organize. I have all the features in my kitchen that I wanted. All while staying within my budget.

Since what I want is emotional health, serenity and peace, this is what I’m choosing. To accept that I don’t always get what I want, to enjoy what I have, and to notice what a beautiful countertop I have – even if it’s not the right shade.

Avivah

The absurdity of the high functioning label

May 6, 2015Parenting, Trisomy 21Avivah

Recently a guest, after observing Yirmiyahu (2 3/4 yr) for a while, asked, “So, is he high functioning?”

Should I proudly say, ‘yes’, as if he’s better than someone who doesn’t get this lucky label?

People are not machines or vegetables that are sorted according to quality and priced accordingly. Inanimate objects can be rated with cold, measurable terms like ‘high functioning’ for the retail market but this is totally inappropriate for human beings.

I understand why people ask and it’s intended as a compliment. They see Yirmiyahu doing well and use this term as confirmation of his abilities. But Yirmiyahu is not high functioning. He is not low functioning.

He’s a living, breathing person with his own unique strengths and abilities, as well as his own challenges. Like every one of us.

Did you ever stop to think what in the world does it mean to be ‘high functioning’? Who gets to determine what the standards are, to check off the abilities of a fellow human being on a paper grid?

Is childhood a competition between the haves and have-nots, between those who can and those who can’t? Are we so arrogant as to think that because we or our children are blessed with certain abilities that it makes us better than those who have different abilities?

Defining success in life is individual. Different people want different things and will need different strengths in order to have lives that are meaningful to them. We have each been created with the abilities we need to fulfill our unique purpose in life. We aren’t meant to be the same and we shouldn’t be rated as if we are.

The reality is that people with disabilities are being rated from the time they’re born. They’re constantly being graded on a scale of performance that may or (more likely) may not be relevant to their individual lives. That same scale will ignore any strengths that haven’t been determined by some official somewhere who doesn’t know the child or his life, and the child is then rated according to his functioning.

Fair? No. Accurate? No. Is someone better than someone else with a similar condition because he’s been labeled ‘high functioning’? No.

So why do we use these ridiculous terms?

Are you wondering about how Yirmiyahu is doing? He’s awesome. He’s smart and communicative and he’s living life on his own timeline. Sometimes that looks impressive and sometimes it looks like there’s a delay, but none of it means that he’s ‘functioning’ better or worse.

If you never thought about these terms until now, join the crowd! I’ve thought a lot over the years about the importance of giving a child space to develop at his own pace and this has informed my approach to homeschooling and parenting. But I didn’t question the usage of terms like ‘low functioning’ or ‘high functioning’ until I had a child with a different developmental curve; it was then that it became alarmingly clear to me that we limit and damage our children when we label them in this way.

Avivah

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this:

Share this: