Monthly Archives: July 2017

My tips for helping the late talking child

parenting, Trisomy 21, , ,

>>From your vantage point of five years into this, I’d love to hear what you feel are the best “tools” to help children with apraxia. I know you used Gemiini and flash cards. Beyond the obvious emotional support we offer to our children, I’m looking for practical advice. Thank you!<<

I’m happy to share what has been helpful for us!

First of all, even if your child isn’t speaking much, assume he understands. If he doesn’t understand yet, he’ll understand more as you give him lots of verbal input, filling his day with words and concepts. Building his receptive language reservoir is a precursor to his ability to express himself. Eventually the expressive ability will come.

Keep in mind that communication of any sort is the building block upon which speech is built. Don’t think because it’s not speech that it’s irrelevant to the question of how to deal with apraxia – communication skills are vital.

BUILDING RECEPTIVE LANGUAGE:

– Flashcards – The most obviously visual way to build receptive language is by using flashcards of words and pictures. (At some point I wrote about using the Brillkids program, which is bascially online flashcards and words – it’s a great program and I only stopped using it when I got a new computer and didn’t reload the program onto it.) Yirmi now repeats each word after me when we do flashcards so it’s become an expressive speech support at this point as well.

We also read lots of books.

– Actively engage your child in your world. Talk to him about what you see, give him space to have a turn talking, even when he doesn’t yet talk. Pay attention to his cues and respond to them. When your child sees that his attempts at communication are effective, he will continue to try to communicate. Like everything else, the more he practices communicating, the better he will get.

– Encourage verbal expression through play and constant interactions. I got the book Play to Talk, by Dr. James McDonald when Yirmi was an infant. I loved that Dr. McDonald (whose work spans decades and is an amazing advocate for late talking kids and their families) says that parents are the answer to a late talking child’s challenges, and that the home is the best place to learn and practice communication. It’s a big shift away from the prevalent attitude that paid professionals are the answer. His website is a great resource, as are his books. On his webpage about children with Down syndrome (and this is relevant to any late talker), he writes:

“After all these years, I am confident that parents can help children with Down syndrome give and get a great deal in life if they are willing to do a few simple but often difficult things:

  • play in the child’s world habitually
  • make children enjoyable play partners before they are obedient students
  • don’t worry about school language before children have a good vocabulary for daily natural communication
  • be very careful not to expect too little (by doing too much for children) or to expect too much (by setting up impossible jobs)
  • pay more attention to positive little steps than to things you may think are mistakes
  • act and communicate in ways children can do (matching)
  • interact back and forth throughout the day
  • be sure children are giving to you as much as you are giving to them”

I learned from Dr. McDonald to go into Yirmi’s world, not just to try to pull him into mine. That includes imitating the sounds he makes rather than only expecting him to imitate the words that I say. Also, I learned to simplify my sentences to match his level of expression to encourage him to respond; it actively pulled him into verbal interactions with us.

– Mediate the world for your child – Mediation is the heart of the methodology taught at the world famous Feuerstein Institute in Jerusalem. It was there that one of their facilitators told me that most people have to be trained to learn this, but that a small percentage of the population are natural mediators – and she informed me I’m one of them! For that reason it’s really hard for me to explain mediation, because it seems like pointing out the obvious to describe it.

Basically, rather than assume he will make the connections on his own, mediation is when you consciously facilitate your child’s exposure to the world around him.
Here’s a nice video that might give a bit more insight into mediation and the Feuerstein approach: Looking Up on Down Feuerstein video

Sign language – I taught Yirmi sign language when he was a young toddler, knowing that language was likely to be a challenge. This has been a hugely important tool for him, since he’s been able to express himself before he had the verbal ability to do so. As his speech has improved and become more clear, he’s dropped the signing. If someone doesn’t understand what he says verbally, he’ll repeat himself by saying the word and signing at the same time. Signing Times videos were a great resource. I also used Signing Savvy to look up words that I wanted to teach him – this is a site with lots of short videos demonstrating hundreds of signs. Signing Savvy was a resource for me to learn the signs, not a video to show my son.

– Gemiini Educational System– I’ve been using Gemiini regularly (I aim for a daily basis) for Yirmi since he was 2.5; we were one of the early families using it for a child with Trisomy 21. At that point it was primarily being marketed for kids with autism. It’s since become a well-known resource in the T21 world.

Gemiini is a web based program that uses a video modeling approach and integrates a number of speech therapy techniques. There are lots of amazing testimonials, including one woman who called me after a blog reader read about us using Gemiini and put her in touch with me. She had a 9 year old daughter with T21 who was completely nonverbal – withing two weeks of starting Gemiini, she began speaking!

Yirmi wasn’t one of the kids who had an amazing jump in speech right away. Actually, it took about a year and a half until we started to get speech – we seemed to be on the very slow track. I’ve already told you my belief that it’s important to keep my eye on the end goal and not get discouraged when the progress in front of me seems slow or doesn’t seem to be happening at all. I never asked about the severity of his apraxia but I can assume it was significant, based on how long it took us to see changes. But we knew changes were happening.

The first thing we noticed is that he began to move his mouth as he watched, trying to imitate the shape of the mouth he was seeing on the screen. As a 2.5 year old, he had never done that. He had only a few vowel sounds that he could make when he started, but eventually he started imitating other sounds.

To sum up a response by Laura Kashbar, creator of Gemiini to the question of how do you know if Gemiini is having an effect: “1) Receptive language improves – is your child understanding more? 2) Gemiini is switching the focus from a daydream state/passive network into active network; when waking up from a daydream there are some things that will happen: a) Eye contact, b) child seems more with it, not in his own world so much, c) will pay attention to sounds when in the past he ignored it, d) get feeling from him that he’s more present. 3) Will see new sounds, new babbling, be more aware of mouth. 4) Fine motor skills increase – great indicators of neurological changes. 5) Gross motor improves dramatically. All of these come together over time to get student going where he needs to go. There’s a global improvement that happens, it doesn’t start with expressive language – it starts with all these other things.”

PHYSICAL DEVELOPMENT:

There’s a very significant connection between speech development and physical stimulation. Everything in the body is connected and the better the body works, the better the mind works. Exercise creates neurogenesis. Of particular importance are activities that integrate cross patterning movement (the hand and feet working in alternate motions).

– Walking/running – This is the ideal cross patterning activity. A saying coined by the Institutes for the Achievement of Human Potential is “Two miles of walking equals talking.” (For a young child, the focus would be on crawling and creeping, which works on lower motor levels of the brain. Don’t rush this stage in order to get to walking – crawling is super important developmentally.)

I’ve been trying to encourage walking for Yirmi when we need to go somewhere, even though I can get where I need to go much, much more quickly if I stick him in a stroller or carry him. This summer he’s been attending day camp (his first time ever!!) and we’ve been starting our day by walking to the bus stop and then from the bus stop to the camp. There are a lot of distractions on the way and this short walk from the bus to camp takes a long time. I try to leave extra time in my schedule whenever I take Yirmi anywhere because I want to encourage him to walk and at the same time, I don’t want to be impatient or feel pressured to get somewhere by a certain time.

He isn’t yet consistently walking very far but stamina is built little by little. Like everything else, we’ll continue to support him and with time his ability will increase.

– Trampoline- In a Facebook group for parents of children with T21, a parent shared that her speech therapist recommended jumping on a trampoline to benefit her son’s speech. That suggestion resonated with me as it matches my approach to therapy and development – to do it in a way that is fun and a natural part of your daily life. He loves the trampoline, and so does every else in the family! (There are lots of great health benefits to using a trampoline as well, like stimulating the lymph system,building immunity and increasing muscle strength – more benefits here.)

Jumping on the trampoline - fun and great for speech!
Jumping on the trampoline – fun and great for speech!

Yirmi quickly learned to do tricks on the trampoline. This physical acuity has extended to when he’s on the ground – he started regularly jumping with both feet within a week of using the trampoline, and shows off his somersaults whenever we have guests!

– Swimming – we put Yirmi in swimming lessons a couple of months ago. He was really scared to do more than sit on the second stair at the public pool and I realized it would take many months to build even basic comfort in the pool at that short weekly lesson. So soon after that I bought an above ground pool to give him a chance to practice daily and build his comfort in the water. He and our other boys now spend hours every day in the pool and his comfort in the water dramatically increased in a very short time.

y - swim 4

y - swim 3

He imitates what he sees his brothers doing, and has learned to keep his face in the water. He can also stay underwater for up to six seconds, simultaneously using the arm motions like those used when doing the breaststroke.

y - swim 2

y - swim 1

To continue to support Yirmi’s physical development, I’m planning to build (or more accurately, for my kids to build :)) a pergola in our yard where we can hang swings. I’m hoping we can integrate monkey bars into the frame, since brachiation is a wonderful therapeutic activity (and of course, fun!).

I’ve been wanting to do this since the end of last summer but ds18 has been at school and not available for a long enough period of time to spearhead this project. He graduated high school three weeks ago and the next day began his job as head counselor for a local camp – now that he’s finished that job, he said he’ll make time to start this project in the next week or two.

Nutrition- we don’t give Yirmi gluten or dairy, both of which are difficult to digest and clog the digestive system. The digestive system/gut fuction is intrinsically linked to brain function. A mind that is clogged up doesn’t work as well. He continues to eat a fairly clean diet – minimal processed foods, mostly proteins, vegetables, fruits, and whole grains/legumes.

Reflex integration – I am very interested in doing reflex integration work with Yirmi, and after a lot of research on the topic chose a specific cold laser protocol. However, when I attempted to purchase the QRI cold laser this past winter, due to a technical problem with order processing we had to drop the idea for the time being. If at some point someone will be able to bring it for us from the US, we’ll try purchasing it again! Parents have had great results from the laser but obviously I don’t have a personal testimonial on that.

How is Yirmi’s speech at this point, as a newly turned five year old? He began saying words when he was four. He’s now speaking sentences of up to seven words (though it’s still hard for non-family members to understand him), mostly words of one to two syllables. His speech has accelerated very quickly and seemingly out of the blue, but it hasn’t been out of nowhere – we’ve been supporting his speech in these various ways for years.

Avivah

See the possibilities in your child, not the limitations

homeschooling, parenting, personal development, Trisomy 21

Can you believe that Yirmi just recently turned 5?

Until Yirmi was born and we received the birth diagnosis of Trisomy 21, I knew very little about what that entailed.  I had the stereotypical perceptions of people with Down syndrome based on very limited personal connection.  When Yirmi was born, my eyes were opened to a much broader, more appreciative and more accurate way of seeing people with differences.

Though people tend to assign a lot of significance to the differences (skin color, religion, political affiliation, income level, abilities), we’re all more alike than different, and we all benefit when we place more emphasis on what makes us similar.  More than anything – every one of us wants to be valued for who we are.  And this has been my focus in raising Yirmi.

Yirmi and his big sister, May 2017
Yirmi and his big sister

We had a 3 hour appointment with a developmental pediatrician very recently (the first since leaving Karmiel 2.5 years ago), who was blown away by Yirmi.  She kept exclaiming that she’s never seen a 5 year old with T21 like him in her decades of working in the field.

She said that he is bright, communicative, emotionally present, focused, takes initiative, and has the confidence to try new things in a new environment.  She told me that these aren’t qualities that she’s seen in a child with T21 of this age, particularly combined with a language delay like his (‘Usually these kids are shut down.’).

A week later I took Rafael for his intake appointment, and again she remarked on how taken she was with Yirmi.  “He’s so emotionally intact.”

y trampoline 2

Why is it the norm for a child with T21 to not be emotionally intact?  To not be confident or communicative in new situations?  To not trust their abilities?  To not be willing to try new things?  To not keep trying to be understood?

Could it be in part because of how those with whom they interact regularly treat them?  Are the frameworks in which they spend most of their time focused on what they can’t do instead of what they can?  Are they being defined by limitation instead of possibility?

Having fun with Daddy!
Playing on the trampoline with Daddy!

People have told me Yirmi doesn’t act like he has Down syndrome, or that he must have it ‘just a little bit’.  What does that even mean??? What limited perceptions are those comments based on??  You can’t have T21 just a little bit – either you’ve got it or you don’t.  He definitely has garden variety Down syndrome, present in every cell of his body.

Though professionals have told me that Yirmi is doing very well, it’s not because he’s inherently different or better than any other child with T21.  I’m not holding him up as an ideal or trying to imply he’s the most amazing child with T21 ever. Comparisons of performance and impressing anyone else isn’t my goal – he is who he is and and regardless of percentages or testing or anything else, he is enough as he is right now.

Having said that, in line with the 80/20 principle, I believe 80% of children with T21 can be doing just as well if given similar support.  I don’t think he should be as unusual as the professionals say he is.  Actually, I think a lot of kids with T21 are already doing great but probably most of them are also being treated like outliers.

I passionately believe that every child deserves to be treated with respect. With respect for where he is right now, with support for whatever limitation he has at this time, and with belief in who he will be in the future.

It’s not hard to do this.  It’s really not.  It may be counter cultural, but it’s not hard.  People think I must ‘work so much’ with Yirmi.  I don’t see what I do as work; he’s not my project to fix.  What I do that I think is of the most value is to parent him the same as all of my other children – I look at what his needs are and try to find integrated ways to support those needs in our daily lives.

Integrating support in a fun way - trampolining!
One example of how we integrate support in a fun way – trampolining!

In my opinion, the most challenging thing is to recognize the aspects of your thinking about your child that are limiting, and then to change those thoughts.  Your actions will follow your thoughts, and your child responds to your thoughts about him.  If you think your child is capable, you’ll have different expectations and take different action than if you think your child has significant limitations.

To consciously shift from a paradigm of limitation to possibility means seeing the potential in your child and acting in alignment with what you trust he will become, long before you see that in him. 

If he can’t yet talk or can’t yet walk, it means believing that if you keep giving good quality input, that you can trust the timing of the output (ie performance) even when it’s taking a lot longer than you would like. At age 4, Yirmi still hardly said any words.  Now a year later, we’re seeing an explosion of speech.  And I trust that we’ll continue to see significant gains with time.

Shifting that paradigm means reflecting your child’s positive inner value to him even at times that he’s immature, irresponsible, unreliable, hypersensitive, or mean.  It means trusting your child’s potential and holding on to that vision even when external circumstances might give you reason to feel discouraged.

And that’s something that benefits every child,  regardless of diagnosis!

Avivah

Lessons from the Pool – recognizing the limitations of childhood thinking

personal development

Last week I went on a two day retreat with 300 other women.  I had a wonderful time and some powerful moments of growth and awareness. Since they were so personal I wasn’t going to share about them but I was strongly encouraged to do it by someone who told me it would be of service to others.   Here is one blinding moment of clarity and light that I experienced.

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

When we got to the hotel in the north where we were staying, the pool was open and it seemed almost everyone opted to go in!

I held back for a bit, since I don’t particularly enjoy being in a crowded pool. After a while it thinned out a bit and I went in. I looked around and realized that although there were a lot of women there, they were mostly clustered in groups around the edges of the pool. If I were to swim across the width of the pool, I would mostly be able to do that. So I set off for the other side, and the deep pleasure of swimming surged through me as I sliced through the water. I went back and forth, thinking all the time how amazing it was to be in the water, feeling one with myself and my movement through the water. I haven’t swum in fifteen years and it felt so, so good to be swimming again.

At one point, I thought to myself how nice it was that I can enjoy swimming even though I might not look like a very good swimmer to someone watching. I was feeling good to be fine with myself regardless of what others might think.

And then I got to the end of the lane and someone said to me, “You swim beautifully!” “Thank you”, I said, while I thought “hmm..”  Why is someone in a pool full of women singling me out to tell me how well I swim but my mind is telling me that I’m a sloppy swimmer? Cognitive dissonance.

I was pondering this as I continued my laps, wondering who was right – me or the outside observer?  It’s strange that I had this negative self-assessment as a swimmer when I love swimming and the only feedback I could remember was positive and took place when I was 12. At that time I was assessed in camp to determine what level group I would be in. The instructor, who was a kind of tough drill instructor type woman not given to praise, exclaimed about me: “Wow, she has power!!!”  And almost as an aside added, “But her technique needs a bit of work.”

This women was impressed by me! I always thought back on that comment as a positive memory. So how if I’ve only had positive feedback on my swimming, I wondered, had I somehow internalized that comment to mean I was a lousy swimmer?  When it was clear to me and everyone standing around that she was very impressed?

All of a sudden, I realized that it was ME who gave myself that definition. Me, who found the tiny possibility of negativity in her comment and blew it up larger than life; me, who created that image in my mind of myself. Me, who continued to unquestioningly own that definition three decades later.

‘If my swimming form could use some work, obviously I was a sloppy swimmer,’ I had somehow reasoned. Is that what she said? Was that the truth? No. It wasn’t based on anything in reality. Just my inability as a twelve year old to allow myself to completely accept wholehearted praise for what it was.

“How many other times and in how many other ways have I done this to myself?” I wondered.

As I had that thought, I was suddenly I was so overcome with emotion that I just started crying right there in the pool.

I can’t describe to you the power of that moment, realizing with stark clarity that I had limited myself for so long without even being aware of it.

This wasn’t about my swimming. In my world, how well I do or don’t swim has very little significance.

It was the power of deeply recognizing how our thinking patterns as children carry into adulthood. If unchallenged, they continue to run our lives behind the scenes. I’ve consciously changed so much of the scripting of my younger self, and this has benefited my life enormously. But I never could change this scripting because it wasn’t until that moment that I had a deep gut level realization that this  way of thinking had been a subtle and pervasive part of me.

It can be painful to let the spotlight shine on our inner workings and imperfections, but it can also be so powerful and freeing. For me this was an extremely expansive and illuminating experience, allowing me to start to see and move away from a limitation that was invisible to me until that moment.

And oh – I can now recognize without reservations that I’m a good swimmer and I have been for many, many years.

Avivah

My tips for making your marriage awesome!

marriage, personal development

My husband and I are celebrating 25 years of marriage!  Eleven wonderful children, several national and international moves, job changes, health scares…we’ve navigated lots of situations together over the years and our marriage is a source of great happiness and stability for us both!

In honor of our anniversary I want to share some of the lessons that have been helpful to me in building our relationship.

Me and my husband

What I say is applicable to husbands or wives, but for simplicity I’m going to address this post to women. I also believe that in the typical relationship (not including abuse or addictions) women have more power than men do to significantly impact the quality of the relationship.

Here’s my first  tip for a good marriage but only those of you who aren’t yet married can use this one:

  • Choose well.  Choose a spouse who is kind, caring, emotionally stable, shares your values and with whom you emotionally connect.  Lots of problems that later come up in relationships are because people didn’t choose well and that’s something that’s really hard to overcome.

I was young when I got married but I consciously sought out role models of strong relationships and thought about what kind of person would be a healthy match for me.  Notice I said ‘healthy’, not ‘good’.  People get into relationships that can feel exciting or good on some level but not be healthy.  People mistakenly think that marriage is all about meeting the right one and the stars sparkling in the air around them.  That can be part of it, but there’s a definite place for carefully looking for the qualities that are important to you.

Okay, on to other musings that are of applicable to everyone!

A general principle of healthy relationships is that people want to be around people who make them feel good.  When you were dating, the odds are high that you and your husband enjoyed one another and felt appreciated by the other.  And you loved being around each other.

But too often, the sheen wears off after you’ve been married for a while and you start focusing on what isn’t and what you don’t have instead of what is and what you do have. You want to change him to be more like what you want him to be. Guaranteed recipe for misery.

  • Be conscious of your husband’s good qualities and let him know how much you appreciate them!  Just because you see some other less desirable qualities doesn’t erase all those good qualities. Every one of us is a work in progress. Don’t be shy about letting your husband know you think he’s a great guy!  What you focus on grows.
  • Don’t get so used to the things he brings to the relationship that you take them for granted.  My husband goes out to work every day to support his family and has done this for many years.  Does his consistently showing up and being responsible not deserve positive feedback just because he’s been doing it so long??  I let him know on a regular basis how much it means to me that he works so hard to take care of us even though he’d probably rather be kicking back on a beach somewhere.

And when it comes to making those changes that you want him to make – he’s lots more likely to make the effort to please you when he feels accepted and appreciated by you.

  • No one wants to feel taken for granted, belittled or inadequate.  I’ve often heard wives talk about their husbands as if he’s one more child that needs to be tended to. Ladies – guys aren’t completely obtuse.  When you think about him like this and speak about him to your friends like this, don’t you think he gets a sense of that even if you don’t directly say anything to him?

And let’s face it.  How many of us can feel that kind of exasperation and not express it?  Come on, you’d have to be a saint to be thinking those kind of thoughts and be able to keep them to yourself!  Learn to shift your thinking by focusing on his good qualities.

  • You’re not his mother.   It’s not your job to fix him or oversee all the details of his life.  He’s an adult, so treat him like one.
  •  When you husband does something to make you happy, don’t point out all the ways he could have done it better.  Let him know how much you appreciate the effort.
  • When you first see your spouse after a long day apart, don’t jump into complaining about how hard your day was.  I know, it’s hard to set aside one’s desire to be heard.  But take a few minutes to warmly greet your spouse.  A warm smile and welcoming, “I’m so happy to see you!” help make your home a place your spouse wants to be.
  • Let him make mistakes without pointing out everything he did wrong.  Seriously, would you want to live with an all seeing eye who pointed out all of your errors? I’d want to run in the other direction!  That’s one reason for the escape of men to their man caves.
  • Ask for what you want.  Don’t hint around and don’t expect him to read your mind and then get resentful that he didn’t do what you wanted him to do!  And don’t tell yourself if he really loved you he’d know what you want without you telling him – that’s not true and it’s just not fair.
  • Make time to spend just enjoying each other. Not at home, distracted by the chores that need to be done or the kids that need to be put to sleep.  It’s worth the effort to get out on a regular basis.  My husband and I go out every week and when we took a break from this for a couple of months due to scheduling changes, I  felt something was missing.
  • Have friendships outside of your marriage; don’t expect your spouse to be the one and only person you can talk to about everything.  That can become a burden.  My husband is my best friend, but that doesn’t mean I expect him to be interested in every single thing that interests me!
  • Similarly, don’t expect your spouse to be your therapist and to listen to all your sadness and pain – that gets old pretty fast.

And here’s a really big one, so big that I could have really put this first.

  • Make self-care a priority.  It’s not your husband’s job to make sure you get enough sleep, time with friends, exercise, meditation, yoga, bubble baths, upbeat music, etc, etc.  It’s your job to make yourself happy.  You can ask for his logistical support and chances are high he’ll be happy to help you make it happen if you’ve been warm, affirming and positive toward him.  Most husbands really want to make their wives happy.  But it’s not his job.

If you could live with someone who was cheerful and fulfilled by her life, or someone who was a resentful martyr who put herself last, who would you rather spend time with?  Who would you want to come home to?  I’ve said this before about raising children but it’s just as true with marriage – you do everyone around you a favor by making yourself a priority.

I could go on and on with lots of little tips but it really comes down to this: treat your husband as you would want to treated- with kindness, respect and appreciation.  Give him the benefit of the doubt when something goes wrong.  Learn to let go of having to have things your way, and realize that ‘our’ way can be even better. Stop shaming, blaming, and complaining.

You know how I learned all this?  By making lots of mistakes!  At times I’ve been petty, judgmental, not respectful, impatient, unappreciative and resentful.  But I chose a good man and I was smart enough to remind myself of that even when I was feeling disgruntled. I knew that strong marriages didn’t happen by themselves; I messed up plenty but I’d try to do it better or differently the next time.

Personally, learning to let go and accept and appreciate what is has been one of the biggest lessons for me.   Some people are naturally easy going and accepting; I’m not one of them.  I came into marriage with a strong propensity to move fast, think fast, and be detail oriented, which strongly correlates with being impatient, reactive and critical.  I’ve worked very, very hard to learn to slow down, to make room for the interpretations that others bring to situations, and to focus on the positive.   And that’s made a huge difference in my marriage.

My husband has been an incredible source of acceptance and support for me through all these years, and I’m very, very grateful to be married to this amazing man.  Every year has just gotten better and I’m looking forward to the next 25 years!

Avivah