Category Archives: Trisomy 21

How and why I use flashcards to support language development

homeschooling, parenting, Trisomy 21

A favorite activity of our four year old, one that he requests at least once a day is…. flashcards.

Yes, really.  Flashcards.  I know, you wouldn’t expect flashcards to be so compelling, right? 🙂 But he really likes them!

I started using these when Yirmi was 14 months old.  I began by printing out words and pictures from the Brill Kids Little Reader computer program; each card is the size of half of an A4 sheet of paper.  One side has the word printed on it in a large font, the other side has a color illustration of the word.

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Over time I printed out a number of these sets and laminated them.  Sets include categories like foods, colors, transportation, nature, seasons, parts of the body, and household items.  Ideally I would have used these systematically several times a day, using one set a week and switching out an old word for a new word each day.  Sometimes I did more and sometimes I did less, and I reminded myself that whatever I did was of value.  I found it easiest for me to do first thing in the day since it was before I got distracted with with lots of other things.

Our basket of flashcards
Our basket of flashcards

As a very relaxed homeschooler, it might seem strange that I would embrace something so seemingly formal as a learning tool.  However, if we approach something as a fun and enjoyable activity without the heavy weight of expectations, kids will often perceive the activity as fun and enjoyable – regardless of how ‘schooly’ it might seem.

I use flashcards as a tool to teach reading and support language development, language comprehension and speech development.  The brain grows from use!  Stimulation and input are very important to a child.  Don’t get caught up in looking for visible results – if you’re sharing quality information, it’s beneficial whether you see tangible results or not!   (I don’t know what Yirmi’s reading ability is since I don’t test him, but there’s no question his receptive language is excellent.)

When I introduce new words, I explain what the word means and how it is used.  So he can tell you, for example, that a ‘stethoscope’ is used to listen to your heart.  Usually the words are nouns or verbs and are pretty easy to explain; some are harder concepts like ‘hibernation’, ‘relaxation’ and ‘humidity’ but I do my best. 🙂

Once he’s familiar with the words, I don’t explain them each time we look at the card.  I read the the word printed on the front, then turn it over, saying the word again while looking at the picture, then turn it back to the word and reading the word out loud again.  It’s a fairly quick process.

small flashcardsAs Yirmi got older, we moved onto cards that were smaller, the size of standard index cards.  In the summer I finally shifted away from using printed picture cards and now the new cards I prepare only have the word handwritten on one side.

While I considered this option from the beginning, I felt it would be more enjoyable and better for comprehension to have the pictures on the back side of the card.  The only downside of that approach was that it took much more time to prepare the cards and I didn’t prepare nearly as many as I would have without needing to go to that effort – we have only about 300 or so cards with pictures.

What I do now is super simple.  Using a dark marker, I write the word in large print on a small white index card.  Recently I went through a children’s book he enjoys and picked out words that we don’t yet have in our sets; preparing the new set of 32 cards took about fifteen minutes!

Most days we ‘do words’, as we call it, once a day.  I’ve kept it a relaxed and positive experience both of us.  For Yirmi,  it means I follow his lead as to which group of words he wants to read together and stop before he’s ready to stop.  I want to keep it fun; I don’t quiz him and I don’t turn it into something he’s ‘supposed’ to do.  For me keeping it relaxed means letting go of the voices that tell me I’m not doing it right by not doing it more often or in a certain order.  Just like I tell you that it’s important to let go of beating yourself up with unrealistic expectations, that’s what I tell myself!

Yirmi has recently been repeating the words as I flash them, so it’s been a great speech opportunity (he has an expressive speech delay called apraxia).  I now slow down as I read the word and ennunciate the word clearly and slowly, techniques we’ve all picked up from the Gemiini video modeling program that he uses daily for speech.

We enjoy reading flashcards together, snuggled up on the couch or in my bed – it’s nice that we can integrate something so beneficial so easily!

Avivah

Understanding the question that wasn’t asked

parenting, Trisomy 21

Today I read a letter to the editor in Mishpacha magazine (Dec. 7 issue) regarding a Q&A session at the Agudah Convention.  The letter writer admits to being confused by the answers of the panelists to the questions presented – again and again the answers didn’t seem to specifically address the question that was asked.

For example, when asked about letting a child go to a Super Bowl party, the response was about creating warmth, love and joy in the family.  The panelists didn’t seem in touch with the questioners.

He went on to say that he was later struck by the realization that it wasn’t the panelists who didn’t understand the question.  They had deep insight into what the core issues were that were behind the questions and their answers reflected that understanding.  He stated the problem was the questioners didn’t understand their own problems.

Not long ago the parent of a young child with Trisomy 21 called me.  She had questions about how to further her child’s development, and wanted to get specifics on my curriculum for ds4.  I told her I’d be happy to share my perspective with her but wanted her to first understand that my approach is one of integration, and doesn’t look ‘schooly’; I don’t have a curriculum for him.  She said she’d still be interested in coming to visit with her son to speak with me.

She brought her cute little guy  over and we settled in to chat.  After about an hour, she said in frustration, “I see your son is doing well but you’re not telling me anything specifically that would be helpful.”  I was nonplussed for a moment.

For an hour I had shared with her books I read, taken them out and offered to loan them to her, shown her Yirmi’s flashcards and explained why and how we use them, talked about how we work on language every day, explained the process of physical development and supporting core strength before encouraging more advanced activities.  I talked about mediating the world around one’s child constantly, explaining, describing, engaging him.

And most importantly I had again and again stressed that your child and his disability isn’t a problem.  It simply is.  Acceptance is so important.  The nonverbal message to your child is that he is perfect as he is while supporting his unique needs appropriately.  This is a huge, huge attitude shift that a minority of parents are able to embrace but I think is critical.

After a pause, I told her I had shared many specifics but since we defined the problem differently, she wasn’t recognizing that I had answered her questions in detail because it wasn’t what she was expecting to hear.  I suggested she continue to follow the traditional therapy model since she seemed more comfortable with that.  I stressed that different things work for different people and while I share what works for us, what is important is that each family finds an approach that is right for them.

She stayed another half hour and before leaving surprised me by thanking me and telling me that my approach was empowering and reassuring! She called me a week or two later and thanked me again, telling me it had given her hope and perspective, and was very calming.   I was so glad she was able to absorb some of what I was really saying – a paradigm shift can take a lot of time to digest and integrate.  It took me many months to come to fully embrace and understand the application of the ideas that I shared with her, and I continue to come back to it regularly and rethink how it applies in different situations.

When the panelists answered the question about attending ballgames with suggestions for strengthening the home environment, it was because they understood that kids who always want to be somewhere else is the problem, and the solution isn’t to say, “Yes, go to the game” or “No, don’t take them to the game.”  The solution is to create a home environment that is warm and loving, so your home is a place your child wants to be!

When I was asked about how to get a child to walk, talk and what therapies to purse, I stressed the importance of believing in your child.  Is your child okay as he is or do you think you need to fix him?  What unspoken beliefs are you raising him with?  The way you view your child and his disability can be part of the problem or part of the solution.

A child with Trisomy 21 is born into a world that has an abortion rate for children like him of over 90% (and quickly rising with the advancement of earlier and more accurate testing) – the birth of a baby with T21 is widely seen as a tragedy.  He is surrounded by the non-verbal message that he isn’t enough, that he is defective.  It’s a world of judgment and this judgement is the reality that our children face almost every time someone looks at them and recognizes their diagnosis by their features.

In our home, I want the formative messages to affirm my son’s worth and value, to build a sense in him of his wonderfulness! This is what I consider to be the critical foundation that all further supportive actions are based on.

Avivah

Why being included is lots better than being ‘special’

parenting, Trisomy 21, Uncategorized

We had a visitor recently who works in special ed in the US. She was going crazy over ds4 – she couldn’t keep her eyes off of him in shul on Simchas Torah- and later on she couldn’t stop talking about how ‘special’ he was.

‘Special’ is a word that I don’t particularly care for so I asked her what she meant.  She seemed taken aback – ‘you can’t see that he’s special?”  “All my kids are special,” I responded.  “What’s special about Yirmi?”

She told me she works with many kids with Trisomy 21 of different ages and he’s not typical of kids with that diagnosis.  She said he acts like a typical kid, he’s so ‘with it’ and ‘so smart’. Okay, that kind of special I can agree with.  🙂

Well, that launched a long talk (monologue? :)) on my opinion about why Yirmi is the way he is and why inclusion is critical and why special ed is not so special and how at least 80% of kids with T21 could be doing just as well or better than him if they had proper support.  She was fascinated by my perspective.  But she apparently had never met a parent with my outlook, because she asked me a few times in disbelief, “You really believe that how he is being raised made the difference?  And you don’t think he would be better off in special ed with professionals?”

Yes, I know that how a child is raised affects his brain development.  Yes, our home environment is critical to supporting his development.  No, I don’t think we’re remarkable or have done anything that couldn’t easily be replicated by others.  No, I don’t think he would be better off in a special ed setting.  I don’t think anyone is better off in a special ed setting than with appropriate and well-mediated inclusion.

Yirmi is being raised in a family where he’s one of the gang.  He’s expected to act appropriately, to express himself, to be helpful and kind – the same as we expect of any of our children. We assume he will develop on his own timeline and while we give him support and encouragement, we don’t pressure him – just like our other kids.  Being treated like everyone else is really important and I think this is a huge factor in how well Yirmi is doing.

Everyone wants to belong.  Everyone wants to be part of.  No one wants to be ‘special’.  I firmly believe that the more we treat others with compassion, acceptance, appreciation and inclusion, the better the outcome is for all of us.  Not only does each individual child flourish in that environment, it makes the world a much kinder, gentler and more beautiful world to live in – for all of us.

Avivah

A new beginning for Baby M

parenting, personal development, Trisomy 21

As I close this challenging month of advocating for Baby M, I want to give you a final update.

After an emergency meeting held by social services this week, the decision was made to remove her from where she is now and place her in a temporary foster home.  While she is living with the temporary family, social services will be facilitating the long term placement for her with a specific foster family that her biological parents requested.

No, this will not be our family.

While to others involved we were the obvious choice to take home Baby M,  I never had confidence that the parents would make the choice based on the factors that seemed relevant to others.  Like the parents, we are charedi native English speakers.  However, the parents are chassidim and we are not, we are from America and they are from Europe, and I expected that cultural compatibility would be of very high priority to them.

I don’t have any details on the two families who will take Baby M and I won’t be getting any details.  In a conversation a week ago with the grandmother, she told me the mother was very excited to find a woman from the same country that she came from who would take Baby M and agreed she would give her back when the parents wanted.  I assume this is the family they requested at the meeting with social services.

Was this decision a huge disappointment to me?  Yes.  I have a huge place in my heart for this baby and was emotionally completely ready to take her.

However, I believe that G-d makes no mistakes and therefore whatever happened was the best thing to have happen in this situation.   If it was truly the best scenario for everyone (including us), we would have been chosen.

So I’m trying to keep my focus on this – remembering that G-d runs the world, that He cares about each of us more than we can imagine, that everything we experience is for our ultimate good and that He knows what He is doing.  As difficult as this last month has been for me, every tiny aspect of it was engineered for the spiritual benefit of every person involved.

My other emotion is gratitude: gratitude that Baby M will finally be with a family who will care for her.  And gratitude for emotional closure for myself and my family.

Thank you to all of you for your prayers and concern for Baby M.  I am so glad that as we go into Rosh Hashana, the Jewish New Year, she will have a new beginning of her own!

Avivah

Baby M – permission to visit withdrawn

parenting, Trisomy 21

I didn’t know when I got a call a month ago regarding a newborn baby girl with Trisomy 21 whose parents didn’t want her that getting involved was going to break my heart again…and again…and again.

I didn’t know that it would bring me under attack and accusation, that I would be treated like a criminal and even threatened with jail.

I didn’t know how very, very hard I would have to work to let go of my anger and blame towards those involved, how hard it would be to balance staying involved and respecting my own emotional boundaries, how I could invest so much of myself into helping and then be forced to walk away and still trust that G-d is protecting this baby.

But I’ve done it.  And I’ve grown a lot through this process.

This has been a dramatic and gut wrenching situation to be part of and every day there are changes in this situation that make it an emotional roller coaster.  Sometimes I feel like I’m living in the Twilight Zone.

  • Yesterday a senior staff member from the institution where Baby M is called and cried when she told me how sorry she is how badly I’ve been treated.  (This was after receiving a very sanitized update from the management.)
  • Yesterday I got a call from a social worker that social services was aware of my involvement and was seeking more information about me.
  • Yesterday an emergency meeting was held by social services to determine what to do for Baby M.
  • Yesterday approval for me to visit Baby M was withdrawn by the parents.

And that is where the situation stands now.  Though I’m now unable to physically be there for Baby M (Malka bas Esther), I will continue to pray that the final outcome be for the highest and best good for all involved.

Avivah

How attachments in early infancy set the stage for the rest of your life

parenting, Trisomy 21

After my last post about Baby M, a woman in her sixties called me.  She shared that she spent the first year of her life in an institution and wanted to know what the cognitive and emotional deficits were that occur in order that she could begin to heal from them.  She told me that despite a wonderful step mother who came into her life when she was one who loved her completely and deeply, she has struggled her entire life with emotional attachments to people, and that she never really felt connected even to her children.

Someone else told me that her single mother struggled with giving her up after birth and though in the end she kept her, mentioned that her mother would keep her in a drawer in a closet when she taught.  She is now doing a lot of work to heal from her experience as a newborn.

For many years it was believed that newborns were little blobs that weren’t conscious of what went on around them.  If they were fed and changed, that was all the care they needed.  There are those who still are unaware of all the research that shows how extremely aware and influenced newborns are by the circumstances and even feelings of those around them, and how the experiences of this very formative time in an infant’s life sets the foundation for his emotional future.  Unfortunately, Baby’s M’s parents (who I haven’t met but believe are genuinely kind and well-intended people) are in this category and though it is sin is one of omission rather than purposeful denying of an infant’s needs, the end result is the same.

Babies are hard-wired for attachment to one or two primary people and secure attachment is at the root of their emotional and physical development.  When from the earliest days of life an infant is responded to, held close and given lots of love, he integrates a positive sense of his own value and is able to later have healthy and emotionally satisfying relationships.  When this closeness and resulting trust is absent for whatever reason and however unavoidable or undesired it was by the parent, the result is a deep seated sense of insecurity and unworthiness.

A child is biologically programmed to thrive with lots of love and physical contact.  A child denied that won’t thrive.  When I first met Baby M, my overriding concern was that at the age of one month she was already emotionally shutting down.  Her brain was protecting her from the pain of not being emotionally tended to by keeping her asleep and lethargic.  It was extraordinarily difficult to wake her up.

Once she woke up, she wasn’t able to focus her eyes.  Learning to focus is a skill that comes with practice and she wasn’t getting it.  She also wasn’t getting the sensory stimulation and input that is important in activating different parts of the brain.

The attachment deficit was my biggest concern, however.  (Reactive Attachment Disorder is the diagnosis when this deficit is prolonged but the damage is there even when less apparent.)  When I found out that Baby’s M’s parents weren’t going to keep her, I called someone experienced with this issue and told her my concern about the effect being in an institution for 2-3 months could have on her long term emotional health.  She suggested that since ‘Mohammed wouldn’t go to the mountain’ (ie Baby M isn’t being placed yet with a loving family), that ‘the mountain go to Mohammed’ (that we provide her with consistent attachment figures by being there with her all day long).

This advice really resonated with me because it matches my own conviction about what she needs, and dramatically limits the damage she is experiencing while in an institutional setting.

Dd15 and I have been with her the last few days – I took the first 25 hours, she took the following day and a half, and dd20 arrived late Weds. evening and will be there until early Friday morning.  I hope that we will continue to be allowed to offer this support for her.  It’s quite moving to see her becoming dramatically more alert, socially interactive and physically active  – a senior staff member exclaimed that it was obvious that our time with her was making a big difference.

We would love to make Baby M part of our family and it is my hope that this will somehow happen.  There is a lot we can give her that most families can’t.  However, the parents want the family who takes her to agree that they could take her back in nine months or two years or five years or ten years or whenever they might change their mind.

I can’t do that.  I just can’t. While I’m willing to allow the birth family regular contact, it isn’t fair to agree to raise her without the security and sense of belonging that she deserves.

Right now Baby M and her parents need prayers.  I could use some prayers as well since this is a very hard situation to be part of.

Avivah

Staying involved but staying out of judgment – a hard balance

parenting, Trisomy 21

I’ve been emotionally preoccupied the last couple of weeks with trying to get help for a newborn baby girl with Trisomy 21 who has been left in an institution while the parents decide if they should keep her or not.

I was asked to get involved by someone aware of the situation.  Initially I was told the parents definitely didn’t want her and she would stay in the institution until a home was found for her.  As I got more involved I learned the situation was much more complicated.  Through the staff members I’ve repeatedly told them the parents can be in touch with me to get accurate information about T21 to help them with the decision.

Eventually the grandmother reached out to me and I spoke to her at length.  My goal has been to communicate the importance of placing the baby with someone who will care for her while the parents make up their minds since Baby M is in a physically and emotionally sterile environment and every day that goes by is causing her emotional and cognitive harm.

Has any of this effort been helpful?  To my mind, not nearly helpful enough.  But after two weeks of no change in the situation, my two daughters and I were officially given permission to visit Baby M (the day we visited she was exactly a month old).   The next day, volunteers were organized to come for four hours a day.  Two of my daughters will also be visiting for 6.5 hours a day and this means that now she will have substantially more stimulation and social connection.  Clearly a newborn needs more than this but this is where it stands now.

There are a lot of details I’m not including and this has been a situation that has raised a lot of emotion for me. Dealing with this been a hard balance.  On one hand, I don’t want to judge the parents.  Everyone does the best he can with the resources he has.

On the other hand, I’m deeply, deeply upset to see an infant not getting the care she needs, especially since the financial and social resources are available to support it – and it’s appropriate to feel anger when you see injustice perpetrated.

On Tuesday the parents will be making a decision as to if they will keep Baby M or not.  I am hoping and praying that that very soon she will be in a good home and ask you to whisper a prayer for her sake as well.

**Update: I was notified by the grandmother that the parents were told to find a family for the baby.  Continued prayers, please.**

Avivah

Things People With Down Syndrome Are Tired of Hearing – video

parenting, Trisomy 21

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

homeschooling, parenting, Trisomy 21

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 apraxiameans 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’?

parenting, Trisomy 21

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.

Ds8, ds3, dd15

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