This past Thursday was my last day at Shalva in Jerusalem, something that I had very mixed feelings about.  I don’t enjoy the long travel time to get to Jerusalem, but once I’m there I enjoy it so much.  The therapists are so encouraging and warm, about me as a mother and about Yirmiyahu.  It’s nice to be with other moms with babies with T21, and it’s just overall a really warm environment.

Then there’s the local child development center, where Yirmiyahu goes for weekly (soon to be twice a week) therapy.  As appreciative as I am for the services being offered locally, the environment is really different.  Here’s an example.  This past Thursday, the speech therapist at Shalva and I were discussing the feeding issues with Yirmiyahu.  I mentioned that I started giving him Chewy Tubes to chew on, and the therapist exclaimed appreciatively and impressed, “Wow!  You have everything!”  She’s told me a number of times what a great mom I am and appreciates the time and energy I put into researching options to help Yirmiyahu.

Now here’s how the same conversation would go at the child development center.  I mention the feeding difficulties and tell her I gave him Chewy Tubes to gnaw on.  She would say (we didn’t have this conversation but it’s been exactly the same in every conversation): “What is that?”  I explain. “What makes you think that’s a good idea?”  I explain.  She asks me, “Did someone recommend this or did you just decide on your own to do this?”  Sometimes she just says, ‘hmm’, and sometimes she tells me the research doesn’t support whatever it is I’m talking about.  You get the idea.  It’s just a very different kind of conversation in the two places.  In one I end up feeling appreciated and in the other I feel defensive and almost attacked.

Today I had an appointment at the child development center and though our regular physical therapist wasn’t able to be there today, the speech therapist already scheduled to join our session was.  I’ve gotten used to a certain kind of attitude though I don’t like it, so today was a really nice surprise.  Even a few minutes into our meeting, I already had a good sense of rapport and warmth with her.

Then we had the assessment, which was a total pleasure. She began by asking me to tell her about Yirmiyahu, so what could I say?  Except the truth, that he’s amazingly cute and communicative and intelligent.  I know, you’re not supposed to say that a baby with T21 is intelligent because the traditional medical model tells parents that these kids are born mentally retarded which is a total lie and sorry, I have to rant for a minute and say these doctors are going to be held accountable in some lifetime for the stunted potential of all the children whose parents treated like them they were retarded as a result of what they were told.  I just spoke to a mother like this a few days ago and I thank God that I happened to meet her and give her some hope because after speaking to the doctors, she had absolutely none and having a more realistic and hopeful picture will change the quality of her life and her baby’s life.

Anyway, back to me and the therapist.  I’m a straightforward person so despite knowing that people will think I’m in denial or living in a dream world, I tell her the truth, that he’s very bright.  She asked me, “Really, you think he’s intelligent?”  I tell her, ‘Absolutely, and very attentive, aware and curious.’

And guess what?  Throughout her assessment she kept commenting spontaneously not just about his cuteness, but about how curious and aware and attentive he is.  At the end, she told me that his communication is very good, specifying all the ways she noticed this. I asked her, “Do you mean for children with T21, or for typical children?”  And she said that his communication skills are on the same level as a typical infant, and that she can’t find a single area of concern.  The feedback at the child development center tends to be lukewarm, and meeting this therapist and having this feedback was really a very nice shift.

I’m hopeful that we will have more of these kind of interactions as time goes on….but it was really a poignant and sad feeling to say goodbye to the wonderful staff at Shalva where this was typical rather than unusual.

Avivah

How time is flying – it’s hard to believe that Yirmiyahu is ten months old today!

Yirmiyahu was playing happily on the floor for quite a while this morning, when ds5 came to tell me he fell asleep there.  It was so cute that I went to get the camera to get a picture.  Instead of a picture of him sleeping, we got this shot instead, as he sleepily opened his eyes and smiled at me before falling right back asleep.

How we love this boy!

Avivah

This has been a very exciting week and a half for Yirmiyahu!

One of the challenges of T21 is hypotonicity, which means that he has low muscle tone.  For this reason, children with T21 have to work much harder and it takes them longer to do the things that I took for granted with my other kids.  With Yirmiyahu, even our youngest (almost 4) is excited about his accomplishments!  All of this is even more gratifying since Yirmiyahu became extremely hypotonic when he got so sick; he lost all muscle strength and control for a while, and it’s really wonderful that’s he’s back on track.

As Yirmiyahu approaches his ten month birthday, here are some things he’s doing.

Firstly, as of a couple of weeks ago, he independently holds his bottle and feeds himself.  We worked on helping him keep his hands on the bottle for months, and it was really nice when he had the muscle strength to be able to do this.  We hold out his bottle in front of him and let him take it himself and put it into his own mouth – this is really cute to watch.

Secondly, he began rolling from his back to his stomach.  He’s been rolling from his stomach to his back since he was two weeks old, and from his back to his side for months.  But until this week he needed a very slight assist to make the final turn from his side to his stomach.

He was moving around on the floor, but now it’s noticeable – he turns himself totally around in a circle (180 degrees), moves backwards, and inches forward.

Before he went to the hospital, he was able to hang in the air supporting all  of his weight while holding onto our thumbs.  This was a big deal – when I first read about this exercise I couldn’t imagine him ever being able to do it – but he did, until he was hospitalized. Then he was too weak.  That is, until this week!  He’s getting strong again!  This is important for his grip and will later assist in his fine motor skills. (This was something we’re doing based on Glenn Doman’s work.)

And he now sits totally independently without support!  (I asked dd to hold her hand behind him as a precaution while I took a picture so that he didn’t suddenly topple over.)

He wasn’t doing any of this (except the bottle) a week and a half ago when we took him to Shalva in Jerusalem, and I’m looking forward to them seeing his progress!  (Since they understand the challenges of infants with T21 as well as what a normal timeframe for various accomplishments is, they’ll be much more excited about this than his regular therapist.)

It’s also gratifying since we’ve helped him develop physical strength and development of the core muscles (that are needed to sit or turn over) by giving him lots of time on his tummy – not what his therapist recommends, but his results are better!  She’d like to see him practicing standing for at least an hour a day, but our goal isn’t for him to stand until he has the muscle strength to support himself well.  This was our goal with sitting as well – we felt that when his muscles were strong enough, he’d sit, and so it was!  (For you homeschoolers out there, you may be reminded of things I’ve written about teaching children to read and you’re right, it’s a similar philosophy in a different framework).

The next major goal is crawling, which he’s already showing the beginning signs of.  This is something his regular therapist wants to forgo – she wants to work on standing and get him ready for walking – but it’s so critical to his development that there’s no way we’re skipping that.  Lest you think that we’re tightly focused on his physical accomplishments and constantly doing therapy with him – we’re not.  We’re enjoying every day with our delightful Yirmiyahu!

Avivah

>>Why do you use the term Trisomy 21 rather than Down syndrome? Do people even get it?<<

The decision to use the term Trisomy 21 on my blog was initially based an intuitive feeling rather than well thought out reasoning.  This in part was probably because this was the term used on the sites and blogs of those whose approach towards their child with T21 I had an affinity towards.  These parents are all proactive, believe in the inherent intelligence and capability of our children, and are dedicated to doing whatever they can to help their children overcome the various challenges that come along with T21.

But the decision to continue using this term was based on history and my feelings about that.  In 1866 Dr. J.  Landon Down identified a number of characteristics that this group of people often share, and the syndrome he noted was named after him; hence Down syndrome.  The physical symptoms he noted were accurate, but his ideas about what led to this condition were not.  He attributed the condition to a ‘reversion’ to the ‘mongoloid race’ and that the evolutionary process had reversed itself and these people represented a backsliding from the superior Caucasians to Orientals, at that time viewed as inferior.  This was a racist perspective that was reflective of the times during which he lived but is not at all in line with our beliefs nor our knowledge today.  Interestingly, after his death one of his own grandchildren was born with Down syndrome – it makes one wonder how different the conclusions he might have come to would have been had he been alive at the time of  his grandchild’s birth.

For close to a century those with Down syndrome were institutionalized, ignored and considered unworthy of existence.  (Well, unfortunately this last one is still very true today, which is reflected in the 90% abortion rate of babies with T21.)  These children do have unique challenges in various aspects of their development that need to be mediated in order for them to maximize their potential.  However, being institutionalized at birth and ignored for their entire upbringing except for the most basic of physical care wasn’t conducive to overcoming their inborn challenges, and not surprisingly, these severely neglected children grew up very underdeveloped cognitively and physically.  (I say not surprisingly since all children raised in institutions and ignored for throughout the course of their lives grow up with severe delays.)  Unfortunately, the impression most people have about people with Trisomy 21 is too often based on the Down syndrome stereotype that we are moving past in our generation.

What caused the condition that was originally termed Down syndrome has been shown to be not at all related to morals (as assumed by Langdon Down) but to genetics, when a baby is born with three copies of the 21st chromosome rather than two.  Trisomy 21 is a term that accurately describes the medical reality.  When you hear the term Down syndrome, that too frequently conjures up a negative picture, and it is this picture that terrifies parents when prenatally they are told their baby is at risk for T21 or after birth it is confirmed.  This picture is being redefined as our children now receive the care they have always deserved but have been denied for so many years.  Today’s children with T21 will be accomplishing things currently assumed to be impossible or at best unlikely, and I look forward to seeing significant advances in the accomplishments and integration of individuals with Trisomy 21.

Yirmiyahu is part of this growing group of amazing individuals with T21 who have a bright future and on this blog this will continue to be the term that I use!

Avivah

I’ve had a couple of extra busy days – yesterday I spent most of the day at the hospital at Nahariyah with Yirmiyahu.  We were there for follow up testing that was supposed to be done while he was hospitalized.  But because one of the doctors doing one of the procedures had less time on her schedule than usual because she was taking off for Pesach, they gave our appointment to someone they deemed more urgent and didn’t tell us until we were sitting there waiting on the last day of his hospitalization.  It was disappointing because I thought one positive of being at the hospital was that at least we’d get all the immediate medical stuff out of the way.

Well, that’s how things go sometimes!  When they realized what had happened, they felt badly and they scheduled all three appointments on the same day so I wouldn’t have to come back three times.  I really appreciated that.  The testing was to determine how a bladder malformation was affecting his kidneys and to see how the problem could be remedied.  (This issue has nothing to do with T21.)  Thankfully his kidneys are still totally healthy, but test results have made it clear that he’ll need surgery to correct this.  They want to wait until he’s one to do the surgery, and he has to be on antibiotics until then to prevent an infection that could damage his kidneys.  We’ll go back to the hospital in another month for a detailed check of his kidneys and probably something else that I won’t know about until we get there.  🙂

Today I went to Jerusalem (with Yirmiyahu) for our first Me and My Mommy group at Shalva in Har Nof.  They said that they’ve had an unprecedented demand recently that they don’t know what to attribute it to, but they have double the number of babies with T21 than they’ve ever had before at one time.  In order to accommodate everyone, they’re giving parents slots for twice a month instead of weekly.  (They also are cutting down the time that babies can be in the program from 2 years to 18 months.)  The babies who come weekly get hydrotherapy, which Yirmiyahu won’t be able to get because of the new scheduling and that’s kind of disappointing.  When I decided to travel so many hours for this, it was because I thought that he would get a full morning of services.  Instead, he gets less than two hours that includes massage, speech therapy and physical therapy.

On the other hand, life is so full now that it’s a relief to only have to go two times a month!  They said that they’ll definitely have a weekly slot for him in September.  And I still feel the social benefit of being with other parents of babies with T21 is valuable.  This year Yirmiyahu is the only one at our city’s child development center with T21 (it’s possible at the other health clinic’s center there might be someone else).  Last year there were two children.  So I don’t have a support network here and often I feel quite alone.

When I was at Shalva today, I met another mother from the north who was coming for the first time.  I was really surprised to see someone else from this part of the country because at my interview they were shocked that I was willing to come so far, as if they had never had it happen before.  I asked her what her motivation is in making the long trip, and she said that her one year old daughter only gets physical therapy once a week (like us) and there’s no other support (like us).  When I told her that was also our situation, she asked me if we were also getting intense pressure to put Yirmiyahu in a therapeutic daycare.  I laughed and told her we were.  It was so nice to meet another mother in such a similar situation!  It’s really different from the experience of mothers who live in the center of the country.

And it was also very nice to be in a room with about ten other babies with T21.  Except for my interview at Shalva five weeks ago when I saw three other babies, I’ve never seen babies with T21.  It’s nice to be in a place where my baby is just one of the crowd.  I do feel a little self-conscious that so many parents commented about him not looking look like he has T21.  He does, just his features aren’t as strong as what is typically seen. I’m not self-conscious about Yirmiyahu, but I don’t want to be the cause of any other mother comparing her baby in a less favorable light to mine.  One mother even asked me if he has Down syndrome!  Keep in mind that every single baby in the room has T21 because that’s what this group is for.  So I told her, of course he does!  She asked if I was sure, and I told her that we did genetic testing and he unquestionably has the common form of T21 (ie not mosaic Down syndrome). She still asked me if I was sure the tests were accurate – she told me he just doesn’t look like it.

As much as I appreciate this framework, I realized that I’m going to have to be careful not to compare his development to any of the other babies there.  It’s natural with so many babies close in age all in one room on a regular basis for mothers to take note of what each is doing, but I don’t want to.  Yirmiyahu is who he is, and just like I don’t compare him to anyone else in other frameworks, I don’t want to compare him to anyone in this setting.  I’m looking forward to getting to know the other mothers during our sessions.

Something else I really appreciated was speaking to the therapists.  The physical therapist has a very similar way of looking at development as me, and that’s nice because I’ve already said that I have differences of opinion in how I view things and what his regular physical therapist wants to do.  It’s nice to have a professional with 30 years of experience agreeing that what I feel is primary is very important.  I’m looking forward to implementing the suggestions that were made today.

So that’s the update on the last couple of days!

Avivah

While I was in the US, I took Yirmiyahu for alternative allergy testing, and we got some interesting results.

Very strong allergies: cows milk (including organic and raw), goats milk (including organic and raw), sugar, all nuts, and corn.

I had figured out most of the list through my experimental trials of different things except the sugar and corn.  Corn didn’t seem to be immediately relevant, until I looked at the two surprises that showed up as not allergens that I expected to be problematic: soy and gluten.

The results that soy was not an allergen for Yirmiyahu shocked me, since he reacted so much worse to soy than dairy formula.  It was for that reason that after trying the many possibilities that we decided to keep Yirmiyahu on dairy formula – it was the least problematic.   So how could he not be allergic to soy if he was reacting so badly to soy formulas?

The answer is, soy formulas are much higher in corn syrup than dairy formulas, so the allergen he was having a problem with in the soy formula was actually the corn, not the soy!

We muscle tested Yirmiyahu on every single formula available in Target the night before we left the US to see what he could best tolerate (a soy toddler version tested best but wasn’t suitable based on his age), and then I bought all they had left.  However, we didn’t end up using much of this before his hospitalization.

At the hospital, they asked about allergies and they then put him on a lactose free, soy free formula.  I had been wanting to get this for him for ages but was told that I needed a referral from a pediatric allergist to be allowed to buy it.  There was a seven week waiting period to see the allergist, and the long awaited appointment coincided with the day that we returned from our US trip.  But finally, finally, after so many months of trying to get a formula that won’t make Yirmiyahu sick, we received a prescription for this formula from the hospital.

The wheezing that has been an integral part of his breathing ever since he started formula has dramatically been cut down!  It might even be totally gone but we’ll need a little more time to be sure of that.

Before Pesach dh went to the pharmacy to buy some of this formula, but they didn’t have any.  The only formula available was in the city of Akko (Acre) or in an Arab village a fifteen minute drive away.  Dh asked a friend with a car to give him a lift to the village, so this is this is where they were a few hours before the Pesach seder.

The formula is quite expensive and I don’t know why they make it so hard to buy it; I wish we could have gotten this sooner for him.  I believe that after the first 620 shekels a month (for a reference point, regular formula is 200 shekels a month), that the rest (about another fourth) is subsidized by health insurance, but we have to clarify that.  The main thing is that Yirmiyahu is finally getting something that his body can digest properly!

Avivah