Today Yirmiyahu and I went to his two year appointment with the child development doctor, his speech therapist and his physical therapist.    We have these appointments about every six months.  You may remember that I haven’t enjoyed these meetings in the past and even though our interactions have improved, I still had an apprehensive feeling when thinking about this meeting.

I was thinking about how to approach the meeting and decided it’s important at this point to share with them a bit more of what I do with Yirmiyahu, beyond what they directly ask me about.

The doctor started the meeting with a smile, saying she heard that I’m teaching Yirmiyahu several languages (ie English, Hebrew and sign).  She asked me what words he knows and I began listing them.  She was happy to hear that I use sign together with speech (not to replace it), and asked me what signs he knows and if he uses them independently to communicate.

We were talking while Yirmiyahu was walking around, squatting in place, asking me for a drink and drinking while standing.  They watched him playing with a doll imaginatively rather than copying what he was shown.  In response to her questions, I detailed some examples of how he follows instructions and shows comprehension of what he hears.

When he pointed to their computer and indicated he wanted to climb up to it, I explained he’s used to sitting with me at the computer and asked if they wanted to see the program we do together.  I had brought my laptop along just in case it was relevant, so I pulled it out and turned on the early literacy program (Brillkids) that we do daily.  This is a fantastic program that Yirmiyahu loves – he comes to me several times a day and signs ‘words’ to ask me to do this together with him.  Seeing a demonstration of what Yirmiyahu does at home was more valuable for them than hearing about it, and they could also see how attentive and engaged he was by the words and pictures.

I feel like this appointment was a game changer. The doctor didn’t refer to Down syndrome even once. She didn’t grade him and tell me how he was doing compared to other kids. She didn’t talk about delays, she didn’t pressure me about putting him into a special needs daycare. She didn’t tell me I need to come for more frequent therapy.  She didn’t say anything like, ‘kids like him’, ‘special needs’ – it was just about him as an individual.

After all the assessments were finished, the doctor said to me, “You’ve obviously been very successful with him.”  In the past I would wanted specific feedback on what she meant by that but today I just said, “Well, he’s an amazing boy!”  And then she replied, with something I never expected to hear, “Yes, he is an amazing boy, and you are an amazing mother.”

And then she repeated, “You are an amazing mother.”

There’s a saying, “Don’t quit until the miracle happens.” Well, this is how I feel about my interactions with the child development team.  I stuck with them, they stuck with me, we kept trying to communicate and we’ve gotten to a good place of mutual respect and appreciation.  It’s been a journey.

Avivah

Our gorgeous boy is now two years old!  TWO!!!  I can hardly believe it!  Don’t you also feel like the time has flown?

This morning we went to a bris and it took me back to Yirmiyahu’s bris, when we publicly announced the Trisomy 21 diagnosis.

Down syndrome.  It looks like this.

Curious.

Engaged.

Flexible.

Interested.

Contemplative.

Active.

Loved and loving.

Proud.

Playful.

Yirmiyahu – smart, healthy and OURS!!  We are so blessed and so proud of our little boy!

Avivah

Watching Yirmiyahu develop has been amazing.  Children with Trisomy 21 have some challenges, one of which is low muscle tone, which means it takes a lot more work for them to develop the motor skills than it does typical kids. It’s like watching a slow motion film, where I can see every tiny step of development, steps that I hardly noticed occurring with my first nine kids.

Yirmiyahu is a pro at climbing stairs  and has now also learned to safely climb down, so I’ve been able to remove the unsightly safety gate that we had at the bottom of our spiral staircase.  One day I took him to the park and on his first try discovered that without socks on he could climb up the eight foot long slide at the park (about six feet high) by himself!  He loved that and after sliding back down the slide once he reached the top, he immediately repeated the feat at least six times in a row.  🙂

He doesn’t have any recognizable words yet but babbles a lot and it’s clear he has a lot he wants to say.  Even without words, he’s amazingly good at communicating what he wants, combining patting, pointing and making expressive faces.    A few days ago I was holding him and ds11 put his arms out to Yirmiyahu.  Yirmiyahu shook his head, swatted his brother’s hands and then turned his head away while clutching me more firmly.  I told him that ds11 would take him to the park- Yirmiyahu LOVES to go outside-  and he turned and dove into ds11’s arms!  He makes a beeline for the door as soon as it opens and I’ve told the kids they really need to close it behind them to be sure he doesn’t take his opportunity to go out.  He’s fast and he’s the first to notice if the door is open.

Yirmiyahu has been drinking independently from a cup for a while.  I’ve never been a fan of bottles nor sippy cups.  Yirmiyahu has needed formula so bottles couldn’t be avoided, but when he began drinking water I gave him a cup and he learned to control the flow of liquids pretty quickly.

He’s recently become really interested in books and flashcards, and will climb onto the couch and deliberately flip through books and become absorbed looking at the pictures.  In the past it seemed random when he was holding a book and I couldn’t tell how much he was getting from it, which contributed to me not being super consistent about flashcard sessions.  Now he climbs into my lap and settles in for a read and loves it!   This week we were gifted with several board books for him by a mom who no longer needed them and he was so excited by them.  (If you happen to have board books in your home that you’d like to pass along, we’d love to give them a new home!  Believe me, they will get a TON of use!)

And what is his latest achievement that has him clapping for himself and us cheering along with him?

Walking!!!

And now, for your viewing pleasure, a few short Yirmiyahu clips demonstrating his newest skill!

Yirmiyahu started taking his first step a few weeks ago, and it’s been slow and steady progress as he builds the strength in his core muscles to balance and take more steps.  It took him three weeks from the time he took his first step until building up to 5- 6 steps in the last few days.  There have been many, many falls along the way though he doesn’t seem to mind.  I marvel how he keeps trying and trying, enjoying the process of learning and acquiring mastery without getting discouraged.   We could all learn a lot from that attitude!

Avivah

Time is zooming by and Yirmiyahu is already 20.5 months old!  And since today just happens to be World Down Syndrome Day, it’s the perfect time for an update!

Where is our busy little man up to now?

Climbing – For quite some time Yirmiyahu would climb up the first stair of our home, then go back down.  When I take him to the park (usually at least twice a week – all the  kids there know that’s his spot!), he spends most of his time at the bottom of the slide, standing next to it, climbing up and then climbing down.  And then a couple of weeks ago, literally from one day to the next – he climbed up the entire spiral staircase in our home to the second floor.  This was very exciting – he loves it and has a great time waving to us from under each step as he does us – but it’s also a little nerve wracking.  A couple of times I found him upstairs with no one in sight; both times he had climbed up himself when no one was watching him.  He’s really fast and he loves being able to go where he wants to go!

We quickly got a baby gate to close off access to the stairs and closed off the open spaces along the sides of the stairway so when he was climbing there wasn’t the fear of him slipping through the side to the drop below.  The gate works fine as long as we latch it.  For a while we were pulling it shut behind us, until Yirmiyahu began to push it open and then climbed up. A day or two after this,  I watched him push the gate open, climb up a step, then turn and carefully pull the gate shut behind him – funny to watch since he’s copying what we do but the reason we close it behind us is to keep him out!  Since I want to encourage his climbing, I let him climb as often as he wants as long as someone is there to keep an eye on him.

Standing – Yirmiyahu began standing independently a couple of months ago and has gotten much more stable.  He regularly cruises around holding on to the couch and chairs, and in the last week he’s begun taking a step in the direction he wants to go in before falling into the arms of the person he’s going towards.  I have a feeling that he may begin walking as suddenly as he began climbing the stairs, with a long preparatory warm up period as he builds his core muscle strength.

Signing – we’ve taught Yirmiyahu some basic words in sign language.  Recently he signed something to one of the older kids, who showed me the sign and asked me what Yirmiyahu was asking for.  It was the sign for a pear and we had only showed him the sign two times a couple of minutes apart a week before – funny that Yirmi remembered what it was better than his older siblings!  He’s done this a couple of times, signed something a week after having been shown the sign, and at the time we showed him the sign we thought he wasn’t absorbing what we were showing him.  We don’t plan to use sign language extensively, but want to give Yirmiyahu the ability to express himself to some degree while his verbal skills are still minimal.

Reading – Several months ago we began an early reading program with Yirmiyahu.  I began using the BrillKids Little Reader program, which is excellent.  If I’m on top of things, he watches this twice a day but it’s challenging since his siblings all run to the computer when I put this on for him and then he gets distracted looking at all of them rather than the screen.

A few weeks ago I began printing my own own flashcards to supplement his computer program.  Each card is half the size of a letter size piece of paper, with a picture of the word on the back.  I laminated them and use them to quickly flash through each side with him.  I thought this would hold his interest more than the computer program but it hasn’t worked out as much like that as I anticipated.  Interestingly, the set of cards he likes best are action words – and that’s the only set I  made that has no pictures.  I act out each word as I show it to him and he cracks up at some of my charades so no surprise that it’s the most interesting group of words!

Ideally it would be best to use the same five to ten cards each day for a week and then rotate and add in new cards.  But I’m not that systematic.  I made almost 180 cards (clothing, body parts, transportation, colors, toys, common animals, wild animals, nature, action words and things you eat with) and I pick up whatever set I think he’ll be most interested in at that moment.  Part of why I’m relaxed about this is because I think of this as reinforcing his computer program so I’m not strict about the structure.   Sometimes I show him the cards a few times a day, sometimes just once, sometimes in addition to the computer program and sometimes not.  It takes less than a minute each time so it’s not an issue of major time, the bigger issue to is to remember to take them out.

The Little Reader program has options for customization that I haven’t explored much yet.  However, I did do some customizing to create a new category called ‘family’.  This includes all his parents, siblings, and this week I added in my mother and her husband.  (I’ll add other family members as time goes on.)  For each person, I’ve loaded two or three pictures.  In addition to dh and I, dd17, ds15, dd13, ds7, ds6, and ds4 each did an audio recording of their names.  So what happens is Yirmiyahu sees the name of each person flash across the screen while hearing that person say their name at the same time, then sees a picture of the person as the name is repeated.  It’s the same structure as the general program but with words that mean something to him.  I play this category kind of as a reward for him after doing his regular words – he LOVES this.  He sits there absolutely mesmerized and can watch it play again and again.   This week I changed the order of all the pictures and people so it’s not predictable what the next screen will show, and in honor of Purim I added in fun pictures of each person in costume.

I can’t really tell you how much he’s picking up or not at this point (though I think it’s highly likely he can at least recognize the names of the twelve immediate members of our family) since my focus is on providing stimulating input, not on testing.  I’d like for him to be reading English well before we start on Hebrew reading and my general goal is for him to be reading English by the time he’s five or six.  That will take work but I think it’s realistic for my relaxed way of doing things.  I know of people who have taught their kids with T21 to read at 3 or 4 and though I’m sure Yirmiyahu is capable of it, I don’t know if I’m capable of the necessary consistency!  My goal is more of a general direction to move towards, not something rigidly fixed in my mind and if we achieve it a bit earlier or later is fine.

Growth – Yirmiyahu has hardly grown since I posted two months ago that we had finally seen some growth after beginning to supplement for cerebral folate deficiency.  I really don’t know what to do about this.  I posted a picture in my last post of him a year ago at 7.5 months and he weighs only five pounds more now than he was then.  It’s not that having a child who is small for his age is inherently disturbing to me; kids come in all sizes and the outside doesn’t determine the value of what’s inside.  My issue is that he has the same tall genes as everyone else in our family and to be so small is a result of that pesky extra chromosome suppressing his growth and that’s a medical malfunction.  Sometimes I feel like I’m failing Yirmi that I can’t figure this stuff out for him.

Health – Overall Yirmiyahu is doing great – he’s strong and healthy and smart!  There is one medical issue that needs to be taken care of now.  We had an appointment with the nephrologist this week who was appalled that he hasn’t been treated surgically yet for the bladder malformation and felt it was medical negligence that the other doctors recommending leaving it this long with it being at the most severe level, when it could be taken care of so easily surgically.  It’s hard to know which doctor to trust when they’re both saying such different things and both are supposed to be good doctors.  At this point my preference is to do surgery; once it’s taken care of we never have to worry about this again.

The alternative to surgery is ongoing daily antibiotic treatment, which the first urologist and I have a difference of opinion about.  He felt there’s no downside to taking the long term daily antibiotic route (for the next five years at least) and I feel this will seriously compromise his health.  Yirmiyahu restarted antibiotics again a couple of days ago and as of today his stomach is already a mess. I’ve worked hard to rebuild his gut after he went through so much in the NICU and then the PICU and it’s like starting at square one again except if he has to be on antibiotics every single day, that doesn’t leave time to help him grow good gut bacteria.  He’ll need to stay on antibiotics until he has surgery.

The earliest appointment I could get with the recommended urologist is in two months; the appointment is to discuss surgery and we’ll schedule surgery based on his feedback.  I don’t have any idea when we’re moving so I hope we’ll still be here by the time the surgery is scheduled; otherwise I’ll have to start this all over again with different doctors in the area that we move to, and that will delay the surgery by several months more.  Right now I’m making plans with the assumption we’ll be here and if something changes, I’ll adapt my plans at that point.

What isn’t new is the joy and light this little person has brought into the lives of us all!  I love watching my older kids come home each week and interact with him – they are so in love with him!  I joke that his first words are going to be, “Oh my gosh, you’re so CUTE!” because he hears this all the time.  They younger siblings enjoy him but the older kids ages 13 and up simply delight in him!  Last night one of the kids said he hopes Yirmiyahu doesn’t get spoiled because of all this adoration he gets, but I told him a child can’t be spoiled with lots of love.  They can be spoiled when they’re allowed to act badly and it’s considered acceptable, because after all, he has a disability.  But to return some of the love he radiates out to us all back to him isn’t spoiling at all!

Avivah

(This post is part of the Day in the Life Series that is part of World Down Syndrome Day.)

The below is from the mother of a daughter with Trisomy 21.

>>I think what impresses me most is your confidence applying information you’ve read in books internet or other research. I don’t have that confidence. Although I may see the logic in a particular therapy eg., I’m often suspect about the possible unpublished side effects long/short term). ANd I haven’t found any doctor that is well versed enough in both conventional and non-conventional worlds, without having an agenda to push, that I find reliable. Do you know what I’m getting at? I’d like to know with whom, in Israel, you have consulted that you feel comfortable with. Thanks.<<

This is an interesting question and basically it is, how do you make a decision without the approval of an authority figure?

There are many wonderful trained professionals out there, both conventionally and alternatively trained.  There are also plenty of professionals who are mediocre.  But no matter how good their training or how knowledgeable they are, they can’t know everything.  And no matter what, no one – NO ONE – cares more about my children than I do.  A parent has a level of motivation and concern that you can’t pay anyone to have.  

What helps me to be open to learning and applying new information is to look around and see who is getting the kind of results I want to have in my life – I don’t know if it’s ever been someone doing what everyone else around them is doing.  When someone has a high quality of life in any area of life, it’s because they’ve been willing to look to their inner compass and take steps outside of the mainstream despite their discomfort or fear.

Reading books or doing online research is only part of my decision making process for Yirmiyahu although that has been significant.  I began my online research specific to Trisomy 21 when Yirmiyahu was 2 days old and in the NICU.  During those first few days, I spent my time in the hospital pumping milk, spending time next to Yirmiyahu’s incubator with my hand on him (wasn’t allowed to hold him at first) and thirteen hours a day on research.  I was a research maniac, trying to cram huge amounts of material in a short time to become conversant with the important points.  Once he was out of the hospital my time spent daily on this dropped to about two – four hours for probably his first year.  I still read a good bit and the more you learn, the more you understand there is to learn but I don’t feel I have to spend as much time on it now as I did then since I’ve gotten a decent understanding of various issues involved.

For most decisions I’ve made, I’ve discussed my concerns with alternative and conventional physicians.  Sometimes they didn’t have an opinion because they weren’t familiar with what I was asking about.  You have to know who to ask about what – you can’t go to the hardware store to buy milk!  In addition to traditional doctors I also take Yirmiyahu to a naturopath and osteopath and I ask them both certain kinds of questions.  His osteopath can explain the specifics of facial bone structure and how it’s affected by manipulation whereas others who aren’t knowledgeable in this field would say this is impossible or unproven despite the long history of this work.

I’ve spoken to therapists about different approaches.  I’ve been in touch with those who aren’t certified but have become experts in different areas by studying every possible bit of information relating to their child’s area of challenge.  I’ve been in touch by with one such mother about T21 and another regarding thyroid issues.   I’ve been very fortunate to find two wonderful resource people in the US who have helped me interpret the results of Yirmiyahu’s bloodwork.  Everyone has different expertise and experience that they draw on.

There are consequences to taking action.  Hopefully they’re positive but of course there’s always the possibility that they won’t be.  At the same time, we too often get caught up in our desire for security and forget that not taking action also has consequences.

To illustrate this, I’ll share the following that is specific to Yirmiyahu, which I’ve written about before.  Yirmiyahu began having breathing problems when we introduced dairy formula that didn’t resolve until months later when I was finally able to convince the doctors he needed dairy-free formula.  When we introduced soy formula he began throwing up repeatedly after having just six ounces and had to be hospitalized.  But technically he has tested allergen-free on allergy tests and I was told by a pediatric allergist there’s no reason not to give him either of these things.  If I had chosen to be passive out of fear of doing something differently, he would still be having dairy formula and require regular steroids and nebulizer treatments twice a day to deal with the side effects.  

Knowing that Yirmiyahu was born with a weak digestive system that was further compromised by high doses of antibiotics in his early days, I chose to give him supplements that included probiotics early on (probiotics started at four days, vitamin supplements started at 8 weeks).  I also decided not to give Yirmiyahu gluten when he began eating solids.  He tested celiac free on every blood screen so it seemed I was being unnecessarily restrictive; more than one doctor told me Yirmiyahu has no issue with gluten and I could give it freely.  I didn’t believe it and continued to give him many other foods but not those containing gluten.   This decision wasn’t validated until recently when I sent his latest labwork to someone with alternative health training, who said the results clearly indicate an area of concern since he doesn’t eat gluten and yet his test results still are showing antibodies – that’s significant.  Two pairs of eyes looked at the same information and came to two opposing conclusions .

I’m giving these examples to show that just because you ask the professionals and you go along with their opinion doesn’t mean the results for your child will always be positive.  No  matter what, there will be different opinions about every single decision you need to make for your child.  No  matter who you listen to, you risk doing something wrong that could have consequences long term that you can’t anticipate.  So what do you do?

You strengthen your inner compass one decision at a time. You look into an issue as much as you can, you ask those who are knowledgeable for their opinions, you take it all into account, you ask God for help in doing the right thing for your child and then you make the best decision you can based on all of that.  We’re all doing the best we can with the information we have.  We have no guarantee that our efforts will bring us success, but we can be fairly assured that if we don’t make any efforts that success isn’t going to result.

My vision for Yirmiyahu’s future is one that medical and therapeutic professionals who are traditionally trained would probably say isn’t realistic.  Some of you would say I’m dreaming also.  That’s okay.  I’m not looking to anyone else to tell me what I want to do is reasonable or acceptable.  I’m looking to my inner compass.

Avivah

Yesterday dh and I had an appointment in the Jerusalem area and I thought today I’d be posting about that.  But literally two minutes before we walked out the door, ds6 woke up.  My husband saw him first and told me to look at him.  I took one glance and the trip was cancelled.  The entire lower third of his face was swollen and instead of the planned trip to Jerusalem, ds6 and I made an unscheduled trip to the pediatrician.

Thankfully, it wasn’t serious though it looked frightening; he didn’t look anything like himself.  I was trying not to panic thinking we were in for another hospital stay.  What it was is what the doctor called apthous; she told me was English but I had no idea what that was.  I looked it up and aphthous stomatitis is basically a canker sore.  I don’t have experience with canker sores and assumed they were something minor; I didn’t know they could have this kind of effect.  When we got home I gave him B12 and probiotics to help speed his healing and then he fell asleep for a few hours.

While he was sleeping, I took advantage of dh being home to get some paperwork for dd17 from the Ministry of the Interior.  In order to get the leniencies she’s entitled to as someone new to the country on different academic testing (she’s studying in a framework that is entirely in Hebrew), I needed to get a letter documenting when she entered and left the country.  After an hour and a half there, I got the paper and headed to the plant nursery that was a five minute walk away.

Ever since I took on the voluntary management of our apartment building, I’ve been wanting to plant some things in the entrance area.  I’ve planted a couple of plants I rescued that were being thrown out and started other plants from cuttings since there wasn’t money to spend from the communal funds.  That was nice but there was still empty space and I wanted some color other than green!  Since there’s now money in the building’s account (which I’ve been managing very carefully since it was in bad shape when I took over) I spent a bit less than fifty dollars on some perennial flowers.  I chose plants that will come back year after year and that will propogate themselves so they will get larger and expand with time.  That makes this purchase a one time expense.

When I got home ds6 was still sleeping but the other kids joined me in transplanting the plants I had planted a few months ago, then planting the new plants.  We filled all of the large stone planters that were empty.  I lined the bare patch owned by the city in front of our building with baby aloes that I took off a rescued mother plant and placed three small flowering  succulents in the center.   In our entrance area I cut back a plant that was mostly killed when someone painted their fence and a lot of paint was sprayed on the plant in the process, sectioned off the shoots that looked random and haphazard with a line of stones that we found when we were digging, and planted a circle of aloes in that area, too.  I’d love to buy white stones to fill in the path between them; it would look very pretty.  One day maybe I’ll do that but for now I’m being very frugal.  I know in the past they’ve spent more than I did on plants to have someone spray poison to kill the weeds so I feel justified in spending what I did.  Considering the budgetary constraints I’m working within it’s looking very nice.  

After a couple of hours of planting outisde, we went in and ds6 finally woke up.  He asked if he could play on Starfall.com, which I agreed to.  The last time I let him do this was a couple of months ago so it was a treat for him.

While ds6 was playing his reading and math games, Yirmiyahu showed us that he knows how to stand without holding on to anything!  We saw a first glimpse of that a month ago and were waiting to see this become something he does intentionally. We’re so excited – and now he can show off at his 18 month evaluation with the child development team in a couple of days.   I would have missed the excitement if I had gone to Jerusalem!  I posted this on my Facebook page, not planning to share it here but then thought some of you would enjoy it.

Yirmiyahu standing by himself

This is the reality of life with kids – you have to learn to be flexible.  Things often won’t go according to plan and that’s okay.  While my day wasn’t at all what I planned and I did have some frustration about having to cancel our appointment, which was something important to me that I really wanted to take care of – I had a really nice day!

Avivah