A Set-back

To contact us Click HERE
The other day I found myself thinking that Chelsea had been pretty well-behaved lately. No episodes of incontinence, no eating of toys, no pulling the hair out of her dolls, nothing out of the ordinary for any kid. I met with her teacher a couple of days ago and she told me how much she had matured and how much better her behavior had been lately. Right about the time I started feeling pretty good about seeing results of our hard work...major backslide! I got some pudding out to put her pill in. After she took her pill, a customer needed taken care of (we own a greenhouse). I left the pudding sitting out on the counter. When I came back, she had eaten it with her hands like some kind of feral creature. She knows that she is not to touch food on the counter without asking. I won't go into the places she puts her hands, but I don't want them in food I'm planning to eat. Well, fairly minor transgression, so I just scolded her and reminded her of the rule. She pouted for a minute, then went back to watching a movie. A little while later, I gave her a plate of ravioli for supper. Another customer wanders in and I go out to tend to them. About 15 minutes later I went back into the house to find my while dog's neck encircled in spaghetti sauce. Chelsea has hurt our dogs before, and we have a solid rule about touching the dogs without an adult in the room. I suppose I needed a rule specific to choking the dogs. Needless to say, I was furious...and Chelsea is grounded. I don't think it will ever really get better, it just abates for awhile and then comes back with a vengeance.

Problem solved....for the moment

To contact us Click HERE
The Depo shots failed miserably. What was supposed to solve a problem actually made it ten times worse. Instead of having to deal with the "problem" for five days a month, we had to deal with it every day for six months. God bless her doctor, she put her on birth control pills. Not only has the problem stopped, but Chelsea's mood has greatly improved. She will take the pills continuously for three months, then off one week, then repeat. She is getting an interesting case of acne, but that's easier to deal with than the other problem! Hooray!!!!

For those who don't know

To contact us Click HERE
I often get get comments pointing out how depressing my blog is at times. I am quite certain that many find it to be a "downer" when perhaps they were looking for something uplifting. I thought maybe this would be a good time to bring to light the reason we have Chelsea in the first place, for those who don't already know. Perhaps knowing how we came to be Chelsea's guardians will explain why our experience is so different from those who are parenting a Down's child by choice. It is a rather long story, but I will summarize it.

On July 13, 1999, Chelsea's baby sister was murdered by her mother and step-father. After much emotional trauma, dealings with Child Protective Services, and two murder trials, my son was given custody of Chelsea by the courts. He was a newlywed at the time, and the combination of the murder itself and having a disabled child placed in their lives with little warning caused their marriage to disintegrate and they divorced. My son tried valiantly to care for Chelsea on his own, but amidst his grief over his murdered child and his divorce, did not cope well. Chelsea was not thriving and learning as she had been before his wife left. In order to protect Chelsea and give her some kind of chance in the world, my husband and I agreed to take her until he could get his life in order. It has been years now, and he still cannot seem to cope with her. I understand this, because I can barely do so myself.

I had only been married about a year when Chelsea came, having been happy and enjoying my life for the first time in years. Being middle-aged and suddenly have a disabled child to care for does not lend itself to happiness. I had always looked forward to that time in life when my boys were on their own and I could once again get to know myself as something other than someones caregiver. One event, on July 13, has had such a ripple effect in all of our lives, but I cannot let go of the thought that Bethanie's murder not only ripped a part of my heart out forever, it also cost me my happiness. If you really take the time to think of the emotional dynamic that takes place every day as a result of these events, you may have a better understanding of why my blog is not all about the wonders and joys of a Down Syndrome child. I will love protect Chelsea until my last breath, but I can't help but mourn the lost years of my life, just when I had started to enjoy them. For more information about Bethanie and her murderers, see my blog "Never Another Child" http://neveranotherchild.blogspot.com/ Thanks for reading.

The break is over, even if she isn't home yet

To contact us Click HERE
We have a few days left, but already I am preparing for school to start, getting her room cleaned, and having anxiety attacks about how I will schedule my doctors' appointments around her school schedule and the absence of anyone to babysit or get her from school if my appointments run over. I have appointments with specialists, and those can be all day events. I am worrying about how I will keep up with her laundry, because our dryer is irreparably broken and we can't afford a new one (or even a good used one). I worry about how I will take care of her if my family doctor's predictions of my final diagnosis come true. I think I am worrying too far ahead, yet I feel like I have to. They say that God never gives us more than we can handle, but I think that being 50 and taking care of a Downs child, being dirt poor, and having a possible diagnosis of MS (and no health insurance) hanging over my head is a bit much.

Chelsea's Homecoming

To contact us Click HERE
Well, on Tuesday evening, Chelsea came home without much fanfare. My son dropped her off at around 7:30 pm and she had school the next day. She sat in her room watching a favorite movie for about an hour, and then asked me what time her dad was coming back. When I explained to her that she was back with us now, that her time with dad had been just a little vacation, she smiled and jumped under the covers. She was asleep in five minutes. I had no idea that he had not explained anything to her. She had not had a bath, and he didn't bring her clothes until 10:30 that night, clean but thrown unfolded in a box. Not my idea of preparing for the first day of school. That's just not how I live. I have everything ready the night before, baths over with, clothing laid out, etc. I like a nice, calm, organized morning. To make matters worse, I overslept the next morning, so it turned into a mad dash to get ready and get out the door. Chelsea took it all in stride, I, on the other hand, was a very unhappy camper.

Support Group

To contact us Click HERE
We had our monthly Down syndrome support group meeting at Pizza Hut this month, hoping to get more people and kids, and it seemed to work!  We had a great turn out and met some great new people!  
The newest addition to our group is Ryder, who is 11 months old and is the cutest little boy ever!  Be sure to check out Ryder's blog! He has some very fun stories to tell!  


Can't wait to hang out with everyone again!  Thank you everyone for coming and the great conversation!

Down Syndrome and Abortion

To contact us Click HERE
There is a new noninvasive prenatal test available that can determine if your unborn child has Down syndrome.  It is a huge ethical and moral debate.  The problem is, there is an enormous amount of misinformation and stereotypes about people with Down syndrome.  I have heard parents tell horror stories about when they got the prenatal diagnosis that their unborn child may have Down syndrome.  The doctors and other people told them a number of myths such as "It will be too hard to raise a child with a disability" "Your child may never smile" "Your child will have to be in a special school" "Your child will not be a real part of society".  I want to know....where did these doctors get their medical degrees?  Obviously they did no work with any child with a disability.

New Zealand's government actually uses this pre-natal test to promote abortion of unborn babies diagnosed with Down syndrome because the "economic costs of screening outweighed the high costs associated with the long-term care needs of a person with Down syndrome."  They have a 90% abortion rate for these children.  I just don't understand.  Is the United States going to become like that?  Even with all of the awareness programs and advocacy, I often fear we are not far behind.  Why are we trying to be God?  God made and created everyone, in the womb, before they were born.

So how do I feel about the test?  I would have loved to have it!  We spent 7 months with the information that Noah has a "greater than 50% chance he will have Down syndrome" (based on the results of non-invasive screening).  That was it.  Yes, we could have done an amniocentesis to know for sure, but there was still about a 1 in 1,000 chance that that test will end in a miscarriage.  I was not going to risk the life of my baby just to know for sure.  It did not matter.  Noah was coming no matter what.

Of course, if I had a test that had no risk of harming my baby, I would have done it to know for sure.  I wanted that information so we could be ready, not to chose whether or not to kill my baby.  Because we knew we had a high chance Noah would have Down syndrome, I got prepared.  I contacted local support groups, the local Down syndrome clinic, read as much information as I could in those seven months.

If you have a prenatal diagnosis of Down syndrome, do not be afraid.  A child with Down syndrome is like any "typical" child, they may just hit their milestones a little later than a "typical" child.  Arm yourself with information, and even more importantly, find a local support group.  I cannot tell you how invaluable these people will become to you.  They will become friends and give you the inside hints and tips!  Check out my my Helpful Resources and Who to Contact First  and Links You Can Use pages.


Please watch this video: http://www.youtube.com/watch?v=0_JViGmEnHA&feature=youtu.be

("Let the Waters Rise" by MIKESCHAIR)

Noah's Brother

To contact us Click HERE
Noah has a wonderful big brother, TJ, who loves him very much.  Everyone that knows TJ, knows Noah just because TJ talks about him so much!  He loves giving him hugs and kisses, says he misses him, tells us to clap for Noah if he does something good and has told us he's so proud of Noah.

Noah enjoys bath time with TJ

So how do you explain "Down syndrome" to a three year old?
At first it was easy, Noah was a baby and TJ had to be gentle when playing with him so we told TJ that Noah has Down syndrome and that means he's not as strong as other babies.  He took that answer but now TJ is asking why Noah isn't walking yet and why he isn't talking yet.  And Noah is strong, so I feel that answer won't suffice anymore.
Also, when I asked TJ what Down syndrome meant, his last answer was "he's not as smart as other babies."  Ugh.  I don't think he even knows what that means but we are very persistent with him that Noah is as smart as other babies and to never ever ever say that again.  
TJ is a very smart little boy.  So I decided to explain exactly what Down syndrome was; which is an extra copy of your 21st chromosome.  We explained we all have 46 chromosomes, except Noah who has 47.  He said that was a big word!  
So we further explained that Noah just doesn't grow as fast as other children.  He obviously understood that a lot better.  Although when asked why, I just explained God made Noah that way, to make him extra special.


I want to get TJ involved at an early age in events held by Down syndrome support groups and even Special Olympics.  I want TJ to grow up accepting everyone's different-abilities and stand up for those who cannot stand up for themselves.  
I think TJ will always look after Noah and take care of him. I don't want TJ to ever feel embarrassed because of any differences Noah may have but actually be proud of those differences.  Right now TJ does not notice any differences.  Even when playing with a five-year old boy that has Down syndrome that can't really talk yet, TJ had such a good time with him, he keeps asking us when he can come over to play!  
I think we are on the right track with TJ and I really look forward to getting him involved and seeing him grow into a strong, loving young man.  And his love for Noah just warms my heart!

Looking after Noah as he learns to walk

Being Gentle

To contact us Click HERE
When Noah was younger I was always so afraid of being to rough with him.  He was so "floppy" because of his low tone and just seemed so fragile.  But Noah is growing up.  He is standing now...which means his is falling...a lot!  There usually isn't a day anymore that I dont go to daycare to pick him up and I have to sign an "Incident Report" because he fell over and hit is head on something.

With standing UP comes falling DOWN

His brother, TJ also isn't the most gentle with Noah.  Noah takes it all in stride though and usually doesn't even notice that he just gave himself a huge welt on his head from falling over.  So I started playing with Noah a little more rough and he loves it.

First he will crawl away and I will grab his legs and drag him back on his belly.  He will roll over and I tickle him.  He laughs and tries to crawl away faster and I drag him back.  H loves it.  Sometimes he will crawl away and if I don't drag him back right away he will stop and peak at me in the corner of his eye like "well, come on Mom!"  
Then I started wrestling with him...in a gentle/fun kinda way.  He will try to get something so I will pick him up and put him against me, roll onto my back with Noah on top while tickling him and roll over and put Noah on the floor and keep tickling him.  He also really like this.  
I also started swinging Noah either backwards (while having my arms wrapped around him) towards the ground or pretend dropping him where he's facing the ground.  I love hearing him laugh!  I'm just worried too much of that and his lunch will be on me or the floor!
I'm glad I am finally able to physically play with him.  He is a little boy!  Little boys need to rough and tumble!

Working with Textures

To contact us Click HERE
So I am continually working with Noah to try textures.  Stage 3 food is out.  So we are on to just plain food, chopped up, which I have to put back into his mouth by his molars.  He is actually getting much better at it!

Daycare reports he has eaten all kinds of things from broccoli (which I didn't really like) to pancakes to eggs to Spanish rice.  I have tried all those at home too.  And since Noah has a sweet tooth like myself, I decided to try homemade chocolate chip cookies.

The only food I have ever seen Noah pick up with his own hands and feed himself is chocolate pudding and chocolate cake.  So I was hoping cookies might do it too.  No such luck.  I did, however, take out the baked chocolate chips from the cookies and feed those to him and he really, really liked those!  He at all the chocolate chips out of the cookie!  (He also liked the cookie dough...shhhh!)

I like the cookie, but I refuse to pick it up

Mmmmmm chocolate!

I also tried broccoli again this weekend, which he again, did not like.  Tried raisins which Noah seems to throughly enjoy.  Also tried soft bites of pizza (just dough and some sauce) and he seemed to like that.  And finally macaroni and cheese (the Spiral kind-which are the best kind!) and he did really well with that too!  We are really making some breakthroughs!  Now if he would just pick up his own food!

This is the "I'm not picking up the food" hand position

Still working with the correct tongue movements

I don't think Noah tries to spit out his food (the food he likes), I think he just hasn't gotten that rotary motion with his tongue yet.  My OT tells me usually after they start walking, they start getting the correct tongue movement.  He really works his tongue but usually I have to push the food back in a couple times before it actually goes down!  But he's not gagging, and he seems to like the food for the most part!  Woo Hoo!

Weekend Bonding

To contact us Click HERE
This weekend started rabbit hunting season, and yes, John hunts rabbit.  So Saturday mornings to Saturday afternoons are mommy/baby bonding times!  Saturday Noah and I played, walked, tickled, giggled, he continuously bit my finger as I tried to put food in his mouth and wanted more cookie dough than I wanted to give him.

Saturday evening was church time.  Noah enjoyed pulling himself up to the back of the pew, looking around (especially up at the lights), rattling his toys and pulling my hair.  And TJ came up with me to sing at the closing song!

Then Sunday we took the boys swimming at our local YMCA.  Noah just LOVES the water!  He even kicks and is not afraid to put his head under or get his ears wet.  I love taking Noah swimming!  TJ liked floating around with the fun-noodles and I tried to "make" him swim but he just doesn't quite get it yet but he will.

Then we just spent the rest of the afternoon playing.  It was a fun weekend with me and my boy!

walking practice

Did Noah Just Sign?!

To contact us Click HERE
During Noah's meal times I always sign "more" a few times and sometimes after he eats the food I will clap and say "Yeah!  Noah wanted more!" It's funny, I was just talking with some new friends the other day, over dinner, how I sign to Noah but I don't know if he really gets it or understands.  Then yesterday, while Noah was in his chair to eat he used his index finger on one hand and pointed to his palm in the other, repeatedly.  I have seen other kids sign "more" this way, but I've never shown Noah that way.  I really didn't think much of it at the time.  I figured he was just playing with his hands and clapping.

Then tonight at dinner, Noah ate both his baby foods and I was walking around the kitchen looking for some "real food" to give him.  He started getting very vocal and I told him "Hold on Noah, I'm looking for food" and I looked over and I swear he was signing "more" again with his index finger pointing to his other palm.  (I also swear he said "more" but I'll let that go for now)

So I immediately run over and was clapping/signing and going "Yeah!  Noah said "more"!"  "Do you want more?"  Of course, he wouldn't repeat that motion.  Did he sign?  I'm not sure but I am going to hope he really did and is starting to communicate with us more expressively.  I tried to get some pictures of the action but he wasn't too willing to participate!  He wanted his mac n' cheese and boiled potatoes.

It looked a lot better than this but I couldn't get the picture

Also I want to point out that Noah ate ALL his mac n' cheese and check out his bib; spotless!  He would even bring the food back into his mouth with his tongue if it accidentally came out!  I've learned that the food has to be on his back molar in order for him to really chew on it though, otherwise he pushes it around and it comes out.  Good job little man!  So proud of you!

Check out that clean bib!  Ate ALL his food!

New Glasses Prescription

To contact us Click HERE
Noah had an eye appointment today where they checked his prescription and it has actually gotten much better!  And Noah was very well behaved while the doctor checked out his eyes so it made it less stressful for us.

First he flashed a light in Noah's eyes and made him look certain directions, keep his head still and look certain directions and watched what his head and eyes did.  He said with and without his glasses, Noah will tilt his chin up to look straight.  When Noah is looking down, his eyes are almost perfectly straight, but when he looks up he crosses his eye and his one eye will shake (nystagmus).  At this point he said there will inevitably be surgery in Noah's future to the eye muscle.  He said they just had to first figure out if they need to correct the muscle that controls the nystagmus or the eye crossing.

Then they dilated his eyes and we had to wait until that took effect, about 1/2 hour so they could check his prescription.

Getting ready to see the doctor

The one question we get most often is how do they check babies eyes for glasses?  Basically they shine lights in his eyes and from the reflection off the eye they can tell the prescription.  The first part of Noah's appointment was to see what his eyes were doing and how they were reacting.  After the dilation, they check the actual prescription.

Such a good boy!

After they dilate his eyes the doctor puts round lenses in front of each eye and flashes a light through it into Noah's eye; just like they do when adults go to the eye doctor except we can say what we see.

Noah will not wear his glasses anymore and when the doctor first looked at him, he thought maybe it was because of the fit, but after they dilated his eyes he found out it is because his old prescription is too strong!  I can't quite remember how he worded it but Noah was four points (?? something) nearsighted and now he's only one point, which is great!  So that's why he probably keeps taking them off!

What's taking the doctor so long?

Furthermore he said, after seeing how well Noah is currently doing and with the correct prescription he thinks surgery will now not be needed!  The correct prescription should make his eye not cross which in turn will hopefully correct the nystagmus.


We recently bought new glasses for Noah.  I absolutely love them.  So directly after our appointment we went to the optician's office with our new frames and had his new prescription lenses ordered.  Those should be done in about a week.  I am going to do a whole post about frames soon because we have tried many and I feel we are close to the best kind for Noah.  Currently he has MiraFlex frames, which are durable but not adjustable.  We are now switching to Tomato Glasses, which seem great and will hopefully be a much better fit for Noah.  Yes, we did try Specs4Us, a brand specifically for children with Down syndrome but they just were not right for his face and they are wire.  (we also have Solo Bambini frames) More to come with comparisons between all the brands soon!

Trick or Treat!

To contact us Click HERE
Tonight was Trick or Treat night in our County and it was a PERFECT night for it!  80 degrees and sunny all day and warm and clear at night.  TJ got a bag full of candy while Noah visited with grandma and grandpa and helped hand out candy.   This will be a short post, it's been a long day and I need some rest!

TJ was a dragon and Noah was Superman

Next year Noah will be walking to get his own treats!

Blowing Bubbles

To contact us Click HERE
Noah loves baths; loves swimming; and is now blowing bubbles in the tub!  It is so cute.  You can hear him make the "brrrr" noise while he is blowing bubbles and he does it over and over.  Then he will turn his head to dip his ear in the water- not sure why he does that, maybe trying to hear himself?!  But then he will continue to blow bubbles.  He is the cutest.  And he gets angry when we try to take him out of the tub.  The water can be ice cold by that time, he's wrinkled like a prune, but he does not want out of that water!  (I think he tries to pee on me for revenge, but I got him numbered and know how to cover him up quickly before that happens!) ;)

Blowing bubbles...

and more bubbles...

and even more bubbles!