Showing posts with label Down syndome. Show all posts
Showing posts with label Down syndome. Show all posts

Friday, April 9, 2010

The Thrown-Away Earring

The main gift I bought Ricki for Passover was a necklace and two earrings made of colored crystals. The second I noticed this set in the shop, I realized that Ricki would LOVE it, and purchased it despite the slightly inflated cost. And I was not wrong about her loving the set. She chose this set to wear all Passover, every single day. But on one of the last days, I noticed Ricki throwing one of the earrings into the trash. On questioning her why in the world she was doing so, she replied that the other half of the pair was missing. I warned her that we would undoubtedly find the missing piece eventually, and then she would be sorry for having thrown this one out. She did not listen to me, and I did NOT fetch the earring from the trash. I decided to let her “live and learn”. Now we found the missing piece of jewelry, but Ricki seems rather complacent about it all. Now I am regretting letting the first half of the pair go to the dumpster, it’s a shame on the money, and it seems that Ricki didn’t learn a thing…….

Saturday, November 28, 2009

“I’ll Make Sure MY Riki is Not Like That.....”

How many times have I heard about a problem other parents have with older children (and young adults) with Down, and so self-confidently thought to myself “I won’t let Ricki fall into that rut. I’ll make sure to teach her in such a way that she won’t do this.”
I guess I thought I was so much smarter than these other parents, and that my access to good educational practices would ensure that I succeed where they didn’t.
Well, I was in for a rude surprise. Ricki sometimes dresses with her door open, and often sticks stubbornly to a wrong and stupid idea. Both of these are things that I once thought would NEVER happen in our home. I AM working on these things, but the realization that I can not wish away bad behavior, but it takes real hard work (and a good plan) is a difficult pill to swallow. Sometimes the realization that her mind just ISN’T working properly, and that her impaired ability to reason sensibly has consequences is a blow. At THAT time, one has to work on accepting and loving your child despite their limitations. (Although that does NOT mean abandoning your educational efforts of behavior plans, etc.)

Friday, October 30, 2009

The Teen and the Shoe Store Balloon

Wednesday I took Ricki to the shoe store to buy boots. And as soon as we finished, she looked at the balloon display (they give away balloons to young customers), and announced: “I want a balloon.”.
I promptly told her that walking out of this store with an inflated balloon in hand was not an option. She is a teen, and teens take home a prize like a pen (another prize the store offers), or settles for me to buy her a different prize elsewhere.
“But I want a balloon.”
At this point one of the saleswomen asked “What’s so bad about a balloon?” So I explained that it was a matter of knowing her self-worth and honoring her maturity. “What, will she also take a balloon home when she’s thirty?” I queried.
So then, when Ricki again said she wanted a balloon, a second mother there took up the challenge, and said: “You know, you are a big teenager. It isn’t fitting for you to go out with a balloon.”
AH-HA!
Now it was someone else, not Mommy saying that it was inappropriate. Ricki quickly acquiesced, and agreed to a prize bought elsewhere. We paid for the boots, I bought her some popcorn, and Ricki walked home, her honor intact.


For more of "31 for 21" (blogging in October for Down syndrome awareness)go HERE

Monday, October 26, 2009

That “Knowing Smile” – type Two

For years I’ve known that special smile: the smile shared by those traveling a similar journey. In my case this was always the smile a fellow parent of a child with Down syndrome would flash me when noticing Ricki next to me. Once as I was exiting the dental clinic of a hospital, I noticed a mother sitting with her older son with Down syndrome. I saw her glance at Ricki, and suddenly she looked up at me with a smile. I returned the grin, and went on my way. Not a word was spoken, but the connection , the fellowship, was there.
Suddenly, I have a second type of “knowing smile” in my life: that of fellow walkers. If I am out walking in the early AM, carrying only a bottle of water and a key, it takes no big brains on the part of a fellow pavement-hitting woman to figure out what I am doing in the local park at that hour. So, more often then not, she’ll slip me a smile as she wizzes past. And one morning I even met a friend of mine, who I had no idea was working on her health. BOKER TOV! (“Good morning!”)

For more of "31 for 21" (blogging in October for Down syndrome awareness)go HERE

Sunday, October 25, 2009

The Birthday Gift

What I bought Ricki for her birthday says a lot about how I view the proper way to educate a child with intellectual impairment. And when I spoke to Ricki’s school officials about the trailing streamers incident

I mentioned my gift as an example of the attitude I want.
Many people feel that the best way to treat a special-needs child is to “make them happy”. I mean, that SOUNDS good, doesn’t it? I mean, we DO want our children to be happy.
But consider this. If you have a (“normal”) son who is failing math, and tomorrow he has a math test, do you let him go see a football game, or do you have him “hit the books”? Obviously, the second choice. Why? You want him to be happy, no? But you realize that, in the long run of his life, he needs that math to succeed and be happy. So you push him to tackle and learn the tools he needs to be a functional, successful adult.
So even though Ricki had mentioned that she would like a ball (the type little kids play with),I did not even consider buying her that. Instead I spent much more money and purchased for her a cleansing face wash, foot cream, a bowl to soak her feet in, a nice towel ,and a pumice stone. I wrapped it all up nicely, and she really enjoyed getting “a gift that suits high school girls”. Of course, that doesn’t mean that she can’t have fun. .....

Thursday, October 8, 2009

Personal Grooming: Time for a Plan

As I was writing yesterday's post, I realized that I was letting the issue of personal appearance side too much. No, I wouldn't let her go out looking poorly, but I was NOT taking steps to make it RICKI'S problem.
I learned years ago that a mother who wakes her teen-age son up every time he oversleeps, is asking for the task of dragging him out of bed daily. She has allowed him to make HIS getting up HER problem. If she lets him oversleep and miss something (assuming that she has already bought him a good load alarm clock), she is letting him realize that it is HIS problem, and he will probably start being more responsible.
So I decided yesterday that I need to stop being Ricki's reminder. I need to set up a system where-by she self-checks her appearance. Then, if I see that she didn't do something, I need to send her back to that list. So I plan to set one up, and start a "campaign" with a prize for cooperation. I hope it works!

For more of "31 for 21" (blogging in October for Down syndrome awareness)go HERE

Sunday, September 27, 2009

The “Broken Record”- Solutions (and a surprise addition at the end.....)


I assume that nearly all of my readers are old enough to remember regular phonograph “records”. My Dad had an extensive collection of records, almost all of it classical music. I remember a series of records produced by a musical Heritage society, which were very good, including one of Renaissance Dances. We were forbidden to touch them, until we had learned carefully the correct way to put the needle on the turning disc. This was to avoid scratches on the grooves.
Of course, the most serious scratch was one which would cause the needle to move back to the previous groove, resulting in a phrase being repeated continuously, ad infinitum..... The resulting defect was like Chinese torture to the listener.
Ricki, bless her, has her own version of this “repeating” torture. Her disc may be fine, but how many times can one listen to the same tape/ movie without going slightly crazy? This is especially true when the tape is very childish. [I once remember a psychiatric patient in the hospital I trained at, who played a hard rock song “I want to get out of this place” continuously, driving the staff crazy. I volunteered to work with her, and became somewhat addicted to the song myself, for a while. It would be fascinating to figure out why some people can hear a song again and again, loving it, while others are disturbed by the constant repetitions.] I suspect that one of the reasons Ricki can hear her tape or CD time after time is because she dances as she listens, and the dancing changes from session to session.
If you have this problem with your special needs teen, or pre-teen, I suggest earphones. It works like a charm. Except that Ricki can’t dance when using earphones. I am even thinking of getting Ricki an MP3 player, and transferring her favorite music to that, so that she can listen and dance without the rest of us hearing.....
* * * * * *
Of course, sometimes I wonder how G-d can stand OUR broken record every Yom Kippur:
“I won’t get angry at the kids
I will talk nicely with the neighbor...
I will call my Mother-in-law more often....
I will keep my diet....” ETC ETC.
An easy fast (to my Jewish readers), and a profitable repentance as well. (To me too....)

Sunday, May 3, 2009

Bird Flue, Swine Flue, and Down syndrome... and Faith

When we first started to hear about the swine flue, Ricki’s brothers started laughing at the fact that I was concerned at all. “Remember the ‘bird flue’? Another great way to sell newspapers......”.
“Excuse me,” I countered, do you realize that in these few days we have already gone WAY beyond where we were with the bird flue?” And that is true. The only good news is that it seems from the US statistics, that perhaps, especially with good treatment, the death rate may be low. But the statistics from Mexico of high rate of fatalities in the other-wise healthy population is worrisome....
But what I worry the most about is Ricki. How will this virus affect children and adults with Down syndrome? We have no idea. If this virus turns out to be hardest on those with poor immune systems, then they will surely be at bigger risk.
And I remember one tidbit from the bird flue scare (which I blogged about HERE and HERE):a little known pronouncement by those in charge (in the US) that in case of a real crises situation, any lack of medication would demand that medicines and medical services be given first to those who are otherwise healthy, excluding the infirm, and those with other preexisting “conditions”, including the mentally impaired and disabled. Israel currently has a meager amount of Tamiflu, enough to cover a bare 17% of the population. Such statistics do not bode well for the elderly or the infirm..... or anyone else not deemed as “contributors” to society.
Despite the irritating thoughts that all of this can lead to (“Why work to plan Ricki’s IEP if she (or we) may not survive?”, “Will I have to cancel my plans for the summer?”, etc.), I decided not to let my mental processes run amok. We have to limit what we worry about to things we can effectively work on, and control. We always seem to want to run our lives, and then something like this pops up to remind us that WE are not the ones in charge. And at that point, we are obligated to hand the reins back to G-d. Our job is to do the best we can with what life throws us. Nowhere is it stated that we get extra “brownie points” for unproductive worry.

Friday, May 1, 2009

Blogging Against Disablism - (updated and expanded version)

The Shopping Trip- Part 2

THE PROBLEM
After having Falafel for lunch, Ricki and I passed a clock store, and since I needed a watch, we entered. Ricki quickly convinced me to purchase her a timepiece. And then, as almost any teen, but with perhaps a bit less finesse, she started begging me to purchase other items for her, all the while handling them. The seller was thankfully calm, but I kept telling Ricki to return the objects that I had no intention of spending money on. And Ricki DID put the objects back, although slowly and with great reluctance. Like a lot of other 14 year old girls that I have known....
We had to wait in the store a few minutes while the owner put a battery in a watch I was purchasing. Meanwhile a man entered the store. I was in the middle of telling Ricki to put a pair of toy binoculars away. He saw her shrug once or twice, and he walked over, exclaiming “How much are these binoculars?” He then GRABBED them from Ricki’s hands, despite her fierce protestations, looked through them for a moment, then put them on the counter, and walked out.
To tell you the truth, I can take the word “retard”, when not used as a slur. I can even usually take the second glances. But the thing that shows me how far we have to go, are the people who act like Ricki does not even exist. And those who act as if she is incapable of learning. I was so shocked by this man’s behavior that I didn’t even react until he had left. Did he really feel that he would teach her manners by grabbing the binoculars? Probably not-he evidently thought that I was incapable as a mother, and Ricki was not smart enough to learn. Or did he even think at ALL? Did his actions not proclaim as loudly as any scream, that Ricki was not a person in his eyes, she was only “Down syndrome”.
And even platitudes like “These children are so loving...” drive me up the wall. Such statements are simply reducing a child with Down syndrome to an entity called “Down syndrome”, not Ricki, Jane, or Avigail. It is true that some times we may need to make a statement about Down syndrome. I can see myself saying that “statistics show us that about 50% of the people with Down syndrome are born with heart defects”. I tell parents that “researchers have seen that in general, children with Down syndrome are visual rather than auditory learners”. But they are NOT “children like these”. They are not “Down syndrome”. They are individuals.















THE CONSEQUENCE
The PROBLEM (with a BIG capital “P”) is that Ricki has adopted their attitude. When she was younger her aid and I worked hard and carefully to give her a good sense of self, Down syndrome, and of its effect on her life. Using stories about people with disabilities, including someone else with Down syndrome, we talked about disability, meeting challenges, and self pride. And we succeeded.... for a while. But about a year and a half ago a group of much younger girls at her school started making fun of her, and calling her names. They were reprimanded, but Ricki, being smart, picked up their message. And Down syndrome became something that she did not want to be. And that, in my mind, is a tragedy.
[I am not talking here about availing oneself of a cure, should one exist. Treating her Down syndrome would not change her intrinsic being or personality, but would simply make her life easier and open opportunities that are currently, for her, sealed with padlock, nuts, and bolts.]
If Ricki is to attain a life of contentment, it can only be achieved if she feels that she is a worthwhile, contributing being on the planet. To internalize that consensus, she needs to receive targeted, appropriate, and true praise for the many things she does. She needs, as much as the “negroes” in the 60’s needed the mindset that “Black is Beautiful”, a feeling that Down syndrome is not a disgrace or that she is an entity to be pitied.
The problem is that as much as I am putting good hard cash into her “self esteem” bank account, she is being robbed and swindled by the man on the street. And, unfortunately, there is no police.......


Blogging Against Disablism Day

Monday, April 27, 2009

Chicken Bones, Behavior Plans, and the Lilliputian Mommy

PART A
Ricki has (and I wish I could write “HAD”) a penchant – no, a compulsion – to throw things on the floor. For a long time we hadn’t really noticed, except to admonish her when picking something up. Then, about 2months (6 weeks ?) ago, I decided that enough is enough. The whole family united behind the cause, and for 6-8 weeks now, Ricki has been summoned whenever we saw any extraneous objects or trash lying around. I was sure that eventually she would realize that” going to the trash can” is easier than “being pulled away from whatever you are doing” followed by “ going to the trash can”. Well, either “eventually” hasn’t arrived, or, for whatever reason there may be, the message is not progressing through the circuits of her brain. I had arrived at this conclusion yesterday morning, and the development of some possible behavior program seemed to be in order. I just wasn’t looking forward top taking the time needed to analyze the situation thoroughly and develop a plan.
I was pleased, however, that in the area of schoolwork, she has been improving, both at school, and with homework at home. I had been able to give her several reinforcing prizes as a result, and had hopes for continued success in this area.
Then yesterday afternoon Ricki asked me to do something on the computer for her. Concurrently she was supposed to have lunch. As I finished the computer work, and headed towards the dining area, a sight I hadn’t seen for a while met my eyes: Ricki had strewn the bones from her chicken all over the floor around the chair. Ricki was already on her way to the computer, and I followed her. I shut the machine off despite my daughter’s vehement protests. I decided that even though a Positive Behavior Plan was not yet in place, it was time to go with Ricki to a higher level of interaction over thrown objects: Utter disregard for household rules would need more than a verbal “wrist-slap” and a trip to the trash can. It was time for her to realize that not only could her privileges be postponed (as she took things to the trash), they could also become forfeit.

PART B
Ricki actually took the closure of the computer, her favorite pastime, reasonably well. That alone shows that she realized that there was a definite measure of justice in the sentencing. Quickly enough, she went to one of her other favorite activities: playing teacher. I soon noticed that not only was she playing “teacher”, she was actually doing some of her homework as she did so! True, it was homework due on Friday, and she had much more pressing things to do... but homework IS homework.

PART C
Two hours passed, and I finally told Ricki that while her “teaching” was fine, it was time to sit down with me and look at the homework due on the morrow. Her response that she was teaching “Gilli” (her imaginary friend), is a rather typical response on her part, and I told her that the homework I had for her was more important. Yet at the same time, I was busy preparing certain visual aids for her use in class, and I sort of let things slip. And again this happened about a half-hour later.
Finally, after about an hour and a half (YIKES!!! HOW did I let het get away with that for so long??? ), I lay down the law: come do homework NOW, OR ELSE. So she turned to “Gili” and begged Gili to let her go, that she Gili would manage...

Ricki needed Gili’s permission to listen to me.
I feel about two inches high.

(Wicked Grin)I warned Ricki that Gili can cook her lunch and wash her laundry tomorrow.

Saturday, April 25, 2009

The Flying Beasties (and my daughter with Down syndrome)

Ricki looked like a character in a horror film who, finally coming face-to-face with a loathsome fearful enemy, gazes at it in shock. She pointed a quivering finger in the direction of the window. I glanced up from the studies we had been working on together, and saw that there was indeed a strange, though harmless sight: a “swarm” of about five miniscule baby flies were swirling around in the airspace by the living room window, looking for the entire world like they were in “holding pattern” at the airport. I gave a few ineffective sweeps at them with my notebook, and attempted to draw Ricki back to the math exercises we were doing.
Ricki was not about to be distracted from the menace located a few paces away. She demanded that I get rid of them. I gave a few more sweeps at them with my notebook, but I guess that they really were flying on instruments or something, as they would not budge from the terrain they had already occupied. (What do you want? They were ISRAELI flies.....) Ricki insisted that I “kill” them.
Reluctantly, I got out a bug spray, hoping that one little spritz (squirt) would make them flee to safer territory, without causing too many casualties. I gave a squirt, the flies dispersed, and we returned to our studies.
Suddenly, about five minutes later, a fly struggling though his final moments on earth dropped squarely on to Ricki’s homework sheet. She yelped in near hysteria, but I swept the fly off the table, hoping that it could somehow survive. But Ricki was not concerned with any UN resolutions, and the poor fly (who had not harmed a soul), had to be dispatched of, for the cause of Ricki’s (and collaterally, my) sanity. So much for peace in the Middle East.

Sunday, April 19, 2009

The Stubborn Player

On Saturday, Ricki asked me to play the game “Trans America” with her. This is basically a strategy game, which sometimes I play with her older brothers. But I agreed, and sat down to play. But as we played, I noticed that often she was putting her train tracks in very odd places. Her moves were guaranteeing her a loss. So I begged her to let me help her a few times, to explain, etc. She sort of agreed. I could latterly see the battle crossing her face, between her desire for independence and her desire to win. At first th quest for independence won out. Then, suddenly, I noted that she was looking at the map cards carefully… she was trying to lay the tracks as the rivers she saw drawn on the map!
Eventually, she let me give her a few hints (I was carefully saying “notice this and this...”, “What is better if you want to do so and so?”), and she won the last round to her (and my) great pleasure.

Saturday, April 18, 2009

The Weird Blog

Courtesy of “Google alert” on “down syndrome”, I noticed a blog tonight, written by a mother of a 14 year olf girl with Down syndrome. “Gee, this should be interesting”, I thought. It was. But not as I had expected.
This blog was negative. So much so, that I only came across a positive statement after one and a half pages of reading. At first, I even suspected that maybe the blog wasn’t even written in truth by a mother, but by someone trying to show the world how “awful” Down syndrome is. A bit more reading made me feel that maybe it wasn’t a fake, but… it was still VERY VERY sad.
I am assuming that this lady’s child is not as intellectually advanced as Ricki (who is in the lower end of the “easy” level of “retardation”). (Sorry, technical term only….) I will assume for argument’s sake, that she is somewhere in the “moderate” range. (I would say “low moderate”, but sometimes kids when taught right, surprise us all.) And what I am going to write now is not only gauged by what I have experienced in raising Ricki, but in talking with hundreds of mothers (Israel has a lot of kids with Down syndrome, and I am one of our national coordinators), as well as extensive reading.

My regular readers will all know that I do not whitewash nor “Pollyanna” my relationship with Ricki. But my love and respect show through everything I write. I feel very strongly that if you want to raise your child to with special needs to be a person you can bear to live with, LOVE IS NOT ENOUGH.

1. You have to believe that your child can learn. And believe me, they can.

2. You have to respect them as individuals. You need to approach them from a direction that takes into account what they want for themselves. If your child is not learning, ask yourself “How can I do this in a way that will work?”
[This reminds me of a story that I heard from a special educator who works for Feuerstein institute. She told how she had a class of teens who had never learned to read (Hebrew). So she started the new year of studies by asking if they liked computers. She received an affirmative answer. So she explained how they need to know the English alphabet in order to do certain things on the computer. So they were very excited and they learned the ABC’s. Once they had done that, she pointed out to them that if they could learn English, they were smart enough to learn Hebrew. And they did. But first they had to believe in themselves.]

3. If you are having behavior problems, and don’t know how (or are not able) to apply behavior modification techniques, GET HELP. Ask the experts. It is hard work, and I know that I am not always 100% here, but it sure beats living with obnoxious behavior.

4. Your older child, teen, or adult with Down syndrome is NOT a BABY. They are a person with Down syndrome. You have to expect them to act their age, as much as possible, by giving them the education, and possibilities to succeed. The more you can treat them as (future) adults, the more interested they will be in meeting your expectations.

Saturday, April 11, 2009

Siblings : The policeman and fire engine

About two years after Ricki was born, I realized one day, a strange phenomenon: Ricki's two brothers, aged 4 and 6, where playing “police” and “fireman” every day with their toy cars. Now THAT was not strange. What WAS strange is that the older would comment each time, “I am taking my son with me, and he does not have Down syndrome.” After he would say that statement, the four year old would make a similar comment.
Of course, the really terrible thing is that I realized that this had been going on daily for about a month, without my paying rapt attention to it. So later that day, I sat each of them down for a talk (separately), explaining, in easy terms, that they were not at added risk, as adults, of having children with Down syndrome. Hopefully their children will be “normal”.
The next day they were back to playing “police” and “firefighter”, without any extra comments.

So if you have a special child, and you think that his siblings are not concerned, or even aware, think again. You just may be surprised.

Thursday, February 26, 2009

Down Syndrome: The Not-Always Easy Track

It happens so often. Someone sees that your child has Down syndrome (or any other disability), and you can see (or you imagine you see) them wondering how you manage. They may look at you with pity.
So how does the special-needs parent react? We smile and say how we love our child (and we DO), and how well he is doing, how talented he is in some ways (and He IS). But even on those off days when we feel that we fell into a bottomless pit, we still put on the "it's nothing" act, and somewhere inside we wish people could accept our child AS IS, without being almost perfect, without him having to measure up to everyone else. And we wish that we could sometimes admit that this is not always an easy track to run on. But we worry that if we admit such a thing, it only strengthens those who say that their lives are not worth living, and so we shut up and smile and something inside cracks a little bit.
That is why parent groups are so great. Because there we can let the “Gosh, DS hurts” sometimes show. But occasionally , or even not so occasionally, even at parent groups, the parents of older children drown new parents in this positive tone that has not even the slightest tint of “it can some times be hard”. I guess they are trying to help the new parents see the tremendous possibilities that their tiny babies have. But what happens is that new parents are afraid to admit that they really didn’t WANT a kid with Down syndrome to start with, and that sometimes they are frustrated “out-of-their-minds”. So let’s sometimes be honest. Down syndrome can be a real pain at times. Now that does not mean that my child is not the light of my life. She is. And she has every right in the world to exist, blossom, and achieve.
And new parents, hear: Shoot for the stars. But know that if you feel like G-d kicked you in the shin, its Ok to be at that place occasionally. Just don’t stay there.

Wednesday, November 19, 2008

Musings of a Nurse

Sometimes it is very frustrating to be knowledgeable.
As a former nurse, and a today-parent, I have often found myself during Ricki’s hospitalizations, on the “other side of the fence”. I have found myself waiting ten minutes for a staff member to come and do something (like take an IV out) that I could do in a moment. I have been told condescending things by staff who don’t realize that I am just as knowledgeable as they are. So if I inform them that I am a bonafide nurse, they will usually treat me with a bit more respect.

It’s a bigger problem when you are NOT of the same profession, but you STILL know more. I have probably read more books and articles on Down syndrome than anyone else (or almost anyone else) in Israel. And I try and keep up with the latest news and practices. So imagine my frustration when an educator tells me I am not being “realistic”, about something that is known and accepted in England or the US at the major Down syndrome centers. So I tried telling them my credentials:
-Registered nurse
-Writer of two published articles on Down syndrome in an international magazine

It didn’t help too much, at first. I became the crazy mom who doesn’t realize that her daughter is retarded.

So now I state right off at the start that I KNOW she has serious problems, is not on the class level, etc.
That helps some….

But you know, some people (rarely- rarely- rarely) DO get it. One lady official who I have had fights with over the years, who years ago was pleading with me to have pity on my daughter and put her in special education, is today willing to help me see that Ricki gets the treatments she is entitled to in the school. Gee, I guess not only kids with Down syndrome can learn, so can administrators…..

Friday, October 3, 2008

Adjusting to a “Down Syndrome” Diagnosis

Over at “Welcome to Illinois” there is an excellent post about not putting too much emphasis on the diagnosis. I would like to add what I think is a very pertinent point.
Many times when our children with Down syndrome are young, we have moments of despair, worry, and wondering how much Down syndrome will affect our child. At times, when we see the difference between the child and his “normal” peers, it can lead to “low-feelings”. This is NORMAL. The important thing is to try not to stay immersed in negative “mud” for too long.

(Now, if you, reader, are a “Oh I just Love Down syndrome” and “Iwould never change my child in the least, I am sorry, but I was NOT there as a new parent. I loved my daughter, and choose to ignore the “risks”, but I was not jumping up and down with joy over the diagnosis….)

But my real point is this. As your child grows, he becomes so much more than a “child with Down syndrome”. The child’s personality, actions, and thoughts become so much more important. I won’t say that sometimes I don’t get exasperated with Ricki (as I do with my other children as well…). I won’t say that the occasional fleeting thought of “Gee, I wish to G-d that she didn’t have DS” doesn’t flash through my mind. It does.

But I am much more aware of:
- her playing “teacher” and reading to her “students” a book
- her hanging the laundry
- her insistence on doing a piece of too-hard homework because the teacher said it was homework
- her laughing at a joke
- her insistence that her brother not DARE to bring his dog to our home (she’s scared)
- her pleasure to discover a gift of jewelry

These things OH SO MUCH make her seem to be what she IS: a teenage girl!