Why I Don't Support the World Down Syndrome Day Conference 2013 at the United Nations

As most people in the Down syndrome community know, World Down Syndrome Day is March 21st every year (3/21). The United Nations has a conference every year.

As it is written on worlddownsyndromeday.org,

Down Syndrome International is delighted to announce that the World Down Syndrome Day Conference will once again take place on 21 March 2013 at the United Nations Headquarters, New York, USA.

This year's World Down Syndrome Day Conference is entitled: "Right To Work".

When I saw it again this year, I felt like I should say something. As much as I support Down syndrome awareness, I do not support the WDSD conference at the United Nations. You may wonder why, so I will explain below.

The United Nations has brought forth multiple treaties which are horrible and extremely detrimental to our freedoms in America. We'll just focus on the treaties involving families. One treaty is called the UN Convention on the Rights of the Child (CRC). You can watch a documentary on the CRC and the dangers of it here. There is also the treaty called the UN Convention on the Rights of Persons with Disabilities (CRPD). This treaty is a big reason I do not support the WDSD conference at the UN.

One might wonder what the CRPD is, as you may not have heard about it, or may not know the details of it. You can view the full treaty in PDF here. You can also view more about the UN Committee, who is responsible for and behind this treaty here.

Article 1 of the CRPD states the following,

The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities...

That sounds so wonderful, right? I mean, we want people with disabilities to be able to have the same rights as people without disabilities. So much of the treaty says things along these lines. No discrimination in education. No discrimination in healthcare. No discrimination in work. No discrimination in the community. Over and over again. And it goes on and on (37 pages to be exact). But....there's more to it.

Article 7, Section 2 of the CRPD states the following,

In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.

This is the main and biggest problem I have with it. I do not want a committee of 12-18 "experts" (as the CRPD calls them) to decide what they believe are the "best interests of the child." This completely takes away the rights of the parents, so that parents may easily be held liable for something they do or don't do. If this committee of 12 gets a report (as they are supposed to get from each country that ratifies this treaty) and there are things in it that don't fit with what they think is "the best interest of the child," then they change their recommendations and say what needs to be done.

People might try to argue and say this won't happen. But, read Article 23, Section 4:

4. States Parties shall ensure that a child shall not be separated from his or her parents against their will, except when competent authorities subject to judicial review determine, in accordance with applicable law and procedures, that such separation is necessary for the best interests of the child. In no case shall a child be separated from parents on the basis of a disability of either the child or one or both of the parents. (bold added)

 

The quote right above shows that the power is in the hands of "competent authorities" to "determine....that such separation is necessary for the best interests of the child." That is very bad news.

So, what if you have a family whose child has an allergy to a whole slew of foods? Or, a child who is homeschooled? Or, a child who has allergies to certain medications? Or, what if a family does not vaccinate? The list really could go on. The parents in these situations knows what is best for their child, therefore they take the appropriate measures. They make sure they eat foods which are good for them and they aren't allergic to. They make sure they don't take medications that they may have an allergy to. They teach them at home to make sure they receive the best education, because they might need a little extra help or have problems in school. They don't vaccinate their children, because they are concerned about the problems with vaccines. But, this committee of 12, or the "competent authorities" in the Country, who are the ultimate deciding factor on all of this could come a long and say these good things the parents are doing, which are for the "best interests of the child," are wrong and not "in the best interests of the child." They become the authority to constituate what are "the best interests of the child." They take away the rights of the parents, family & caregivers who actually do know what is best for the child.

It's sickening to me to see this. It sounds so good on it's face, but it's horrible. I love my brother with Down syndrome and I do not want a far away, international body of 12 so called "experts" to have the say as to what is best for my brother. Because, they.don't.know.

There are plenty more problems with the UNCRPD, but this should be enough to stop someone in their tracks and take a second look at this.

There is plenty of support and awareness for people with disabilities in the United States. Many of these "protections" this treaty calls for are already covered in the Americans with Disabilites Act. We are doing a fine job without the United Nations. And I hope, by God's grace, it stays that way.



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Life on the Ranch: Lily, O's Bunny

Little O had named one of my bunnies that I had kept as a baby a year ago or so, "Lily." It was kind of "his" bunny, but then he said I could sell her. So, after sometime, I sold her. He then was disappointed I sold her and said he wanted to name another bunny, "Lily."

I had an idea come into my head that we would get a French Lop doe (I've kind of always wanted one anyways), name her "Lily" and she'd be O's bunny.

He kept asking me when we'd get "Lily", but it took some time since we had to find the right one first. Well, about a month and a half ago, we found her. She ended up being a French Lop cross, but he likes her a lot, so doesn't really care. O is so cute to watch with her, as he is so gentle, caring and so concerned that she's always okay.

Lily's gonna be a big girl, but thankfully she is super mellow, so O has no problem carrying her around (she's already about 6 lbs at 11 weeks old!).

Hopefully we'll be able to train her to walk on a leash soon too. O's walked her on a leash once already, but she needed to grow into the harness a little bit more before we try again.


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8 Blessed Years

8 years ago this month, my life changed forever. O & his twin sister, Yo, were born. 

I was 16 years old at the time and had been running the house with my then 14 year old sister, Ez, because the twin pregnancy was tough on my mom. Finally, one Wednesday night, my mom went into labor, so down to the hospital we all went. After a long night, the twins were born. 

Ez & I had stayed with my mom in the hospital all night, so we were exhausted as we stood in the hall outside of the operating room waiting for the news of the twins arrival. Eventually the nurses wheeled them by us in a little bed. I remember their tiny little faces both staring up at us as they whisked them by. They were so small. So cute. And we were so excited for their arrival. 

Shortly after they were taken into the NICU, my dad came out of the NICU saying, "there is some bad news..." I know I've posted this before, but it's so clearly etched in my memory of their birth. I remember exactly where we were standing and I have a picture of that moment frozen into my head. After my dad said those words, in the second before he finished his sentence, my sister & I's hearts sunk, not knowing what he was going to say. My dad finished his sentence by saying, "it looks like the little boy might have Down syndrome." Our hearts were relieved and I felt like I could breath again. We both said, "that's not bad." 

And his diagnosis is not bad. I was completely clueless at the time as to the details of what Down syndrome was. In my 16 years of life, I had never once thought about having a sibling with a "syndrome" or special needs. But, was the excitement of having two new siblings going to change because one had a "syndrome"? No. It's just another step along this journey of life. And I determined to jump on the bandwagon with him and do whatever he needed and whatever we would need to do. 

I quickly learned a lot about Down syndrome. That first year there was a lot of learning that had to be done. And it had to be done quickly, because a little guys life and well being depended on it. 

Throughout the years, we've had our challenges. But, it's just part of this journey. I couldn't be more thankful that God put O in our life. I'm so thankful he was put into a large family, because it has been a tremendous help for him. Having so many "cheerleaders" around him all the time, has encouraged him to get to those milestones.

It's hard to believe O & Yo are 8 years old now. I remember not being able to picture what it would be like when he would be 5 years old, let alone 8. I remember when I first joined certain listservs and I would be getting advice from parents with "big kids" who had Down syndrome - their kids were 5, 8, 10 years old - and that seemed so far off.

It has been a blessed 8 years. O struggles with some things still, but is thriving. He is doing so well, it's truly a blessing. His biggest delay has always been his speech clarity, but most of us (who are around him all the time) understand him. He says full sentences, just needs help in clarity.

Seriously, I think a lot of people would be way better off if they had the blessing of someone with Down syndrome in their life.



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31 for 21: Beautiful Fall Weather!

Just a couple pictures from the walk up to visit Grandma & Grandpa yesterday. I missed my first day...and we're just 4 days into October. Oh boy. But, hopefully I can stay on top of it :).

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31 for 21: 5 years ago...

I wrote the following piece 5 years ago when my brother was just 2 years old. Since I'm short on time tonight and tired out, I thought it would be good to share this post again. What a blessing he is!


Looking Back Through The Past Two Years

I remember when mom was in labor.

I remember when mom was taken to the OR to deliver the twins.

I remember when Ezzy & I stood in the hallway outside of the OR awaiting the twins arrival.

I remember when the NICU nurses whisked the twins by us in the hallway.

I remember when I burst into tears after seeing their precious and tiny faces.

I remember when Abba came out of the NICU saying "it looks like the little boy may have Down syndrome."

I remember when the first & only thought I had was "that's not bad", and I purposed to be there for him.

I remember one of the first times I saw him he was under an oxygen tent and so tiny.

I remember when the twins were so tiny; their heads were smaller than the palms of my hand.

I remember when the doctors suspected he might have a hole in his heart.

I remember when he had the echocardiogram on his second day of life . . . how we waited and watched in silence for the word. After silence for a few minutes the man who did the echocardiogram said, "Everything is good." Tears of utter joy and thankfulness to God were shed.

I remember when Stacey A. heard the good news about his heart, she about dropped the pizza on mom!

I remember when he gave a little smile at only two days old.

I remember when mom tried to nurse him one of those first few times; he just laid there and wouldn’t do anything. We had to hold the oxygen on his face.

I remember when he had all those IV's in him. And, a feeding IV in his umbilical cord. The tape from the IV's were hurting and cracking his fragile skin (we had the nurses fix that).

I remember when he had the IV taken out of his umbilical cord at 3 days old. I almost passed out!

I remember when he was moved into an incubating bed because he wasn't keeping himself warm . . . now the oxygen was in his nose.

I remember when we would open up that bed to hold him, or just stick our hands through the holes to be able to touch and rub him.

I remember when we would take him out to hold him, or try to have him nurse; we had to be so careful about the IV's and all the cords that were on him. We had to watch his O2 sats too.

I remember when his little arms and legs had the IV's in them and that stiff board taped around his arms and legs.

I remember when we would try to give him a bottle in that incubator bed and he would just lay there and hardly do anything.

I remember when he had a gavage tube in his nose so that he could be fed and gain some weight.

I remember when she was discharged, after 6 days in the NICU. It made it very difficult because she couldn’t go into the NICU anymore.

I remember when we would have to leave him in the NICU. He would be awake, with his big, bright eyes starring at us, and we’d have to lay him down in that little bed . . . with no one by his side. That was so hard and sad!!

I remember when we did the "24-hour-boob-a-thon"! Going in every 2 hours so mom could nurse him. We had to show that he could come home and survive!

I remember when mom proved to the nurses that she could care for him at home . . . we just wanted him to come home with us!

I remember when the doctor agreed to let him come home after 13 days in the NICU. We were praisin' the Lord!!

I remember when he came home. I spent hours just sitting on the bed holding him, since the oxygen tanks were hard to haul around. But, we eventually started carrying him and his O2 tanks everywhere!

I remember the so many trips we made back and forth to the hospital to "weight checks" on him every couple weeks to make sure he was "surviving."

I remember when we'd question the docs, go back and forth with them and show them that he was fine with the slow weight gain he had. Little did we know what we'd find out in just a few months, the answer was right there the whole time.

I remember when he was able to get his oxygen off. 6 weeks after being home.

I remember when the docs questioned mom on vaccines for him. I'm so thankful for the speech she gave them – they were silenced. Praise the Lord we did not vaccinate him.

I remember when we had the last appointment at Olive View, what a relief we did not have to go back.

I remember when we found Dr. Kolchins. We were relieved to find a doctor who seemed to know a little about DS, we didn't have to tell him everything.

I remember when he called and said his thyroid was "borderline-hypo." We were kind of sad, but thankful that it was just that and not something worse. Little did we know that he had this problem since BIRTH!

I remember when we asked the doc for time to research. It was amazing what we found!

I remember when we started finding out what hypothyroidism was . . . it explained him to the tee!

I remember when we found out about TNI. We thought the info looked good and we had nothing to loose, but all to gain. God used TNI to improve his life SO much.

I remember when, after just days and within weeks of giving him TNI, he started to gain weight, look so much healthier, his face filled out and was not skinny anymore, he didn't look sickly and scrawny anymore, his hair started to grow, he started to grow, his tone improved greatly, and he started exceeding in gross and fine motor skills tremendously.

I remember when we went back to Olive View and got his blood work records. We were shocked to find out that he had major thyroid problems at birth. We were told his thyroid was fine, when it was not. Knowing this could have changed those first 8 months tremendously! But, praise God we were able to find out about his thyroid and TNI when we did!

I remember when he learned to sit . . . only a month after starting TNI. His tone was so improved!

I remember when he learned to drink from a sippy cup at 10 mths old.

I remember when he could stand at 12 months. God had improved his life so much in just months!

I remember when we found out about and met Dr. L. We were very thankful to find a doc who told us way more about DS than any other doc. We learned from him, instead of having to teach the doctors.

I remember when he started to crawl. It was his own way of crawling, but he was crawling! He got around very speedily!

I remember when he got his first two teeth at 15 months. They were two top molars. We thought he’d look funny, but about the same time his middle top teeth came in. Shortly thereafter his middle two bottom teeth and his bottom two molars came in. At 23 months, two more bottom teeth are coming in.

I remember when he learned to drink out of a straw at 13 months old. That honey bear straw cup from TalkTools worked so well! He learned in 2 DAYS! He was finally able to drink out of other things, besides a sippy cup. This was a great improvement for his oral motor therapy! He's on Straw #1 still at 23 months old, but he's improved so much. And, Lord willing won't be on Straw #1 too much longer.

I remember when he did his first sign, "please."

I remember when he did another sign, "eat" and another "owie." Now, he does just about any sign he's shown and he remembers them really well.

I remember how he signs "I love you" all the time. Even at times you're not expecting it. What a sweet-heart!

Now, 2 years later, he is doing so well. God has been so kind and merciful to him and us. Looking back through the past two years is amazing. Things have changed so much from when the twins were born. They are such a blessing and joy to have around. Even though he is slower than his sister and normally is 2-3 months behind her in his skills, he's still a blessing. And, God has created him the way he is! He understands a lot more than we realize, I think. May God continue to give him understanding! One of my favorite verses has got to be:

Psalm 100:3-5

"Know that the LORD, He is God; It is He who has made us, and not we ourselves; we are His people and the sheep of His pasture. Enter into His gates with thanksgiving, And into His courts with praise. Be thankful to Him, and bless His name. For the LORD is good; His mercy is everlasting, and His truth endures to all generations."





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Something Funny From the Little O-Man

Blogging has been on the back burner so far this year. But, I thought I'd pop in here and share a cute little story about O. He's quite the character and seems to do more and more funny things the older he gets :).

Today we were doing flash cards. O has the hardest time remembering the two letter words we read, “in”, “it”, and “is”, but he can remember 4 or 5 letter words so easily (kind of a weird puzzle there!)!

Anyways, we got to the flash card with the word “in” on it and he had no idea.  After trying to remind him, make him think and focus, and he still didn't remember, I told him the word was “in.” O replied with "oohh", with the tone of an "oh duh" kind of response :). I said “you always forget that one.” Being the silly boy that he is, O, as he made a funny face and was pointing to his head, said “need to get it in my brain!” Hahaha! We all were laughing at him.

He then proceeded to tell me he needed to get some other words “in his brain” as we went along with the cards, since we all laughed at that statement.





O comes up with some of the quickest, most hilarious statements sometimes! Such a blessing!

There are statements probably every day that I could share from him!



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7 Blessed Years!

This month O and his twin sister, Yo, turn 7 years old! It's amazing to think they are already 7. Wow, times flies!

It feels like just yesterday that we had that chaotic and stressful, yet joyful day at the hospital.

My sister and I waited outside the operating room where my mom was having the twins (she was in the OR in case she had to have a C-section) to hear the news of if they had been born yet or not. Soon enough, two nurses rolled the twins by in a little cart, slowing down just enough to let us take a peek at them, as they continued on their way to the NICU.

That day changed our lives for the better. Within minutes my dad came out of the NICU and told us it looks like there might be some "bad news." Our hearts sank, not knowing what he was going to say. He then continued, "it looks like the little boy might have Down syndrome." Hearing him say that was to our immediate relief. We both thought, "oh, that's not bad." That's where our journey began and Lord willing, He will give us many more blessed years with O (& Yo).

The twins would stay in the NICU for 2 weeks (Yo was released after 6 days). It was a trying 2 weeks to say the least. O came home on oxygen and had oxygen for 6 weeks after coming home. That was a new challenge as well, but we learned how to cope with it quickly.

Now....

Yo is a blessing and a big helper, both for O and the rest of the family. She's a very independent little girl (in a good way) who learns things quickly.

O brings much laughter and fun to the family. He most certainly takes life a little slower and laid back, but it's good to slow down in life sometimes :).

It's neat to have a little boy who at 7 years old......still likes to be cozy and cuddly with his siblings when he wakes up in the morning (he normally sits on my lap while I'm doing work at the computer when he wakes up in the morning). And who likes to have someone be cozy with him when he goes to bed at night.

We find ourselves doing the funniest things sometimes, because O gets so excited over it and it makes us all laugh. For their birthday, we had a little picnic in the forest on our property. It was O's idea and he was so excited. Little Yo was pretty thrilled as well, but O's a little goofier than Yo. So while O claps while jumping up and down with excitement, Yo will just be smiling.

The last 7 years have had their share of trials, but more importantly, many blessings.



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Life On The Ranch: Winter Walk

I've been a total slacker when it comes to blogging lately. I just haven't had enough time to blog on a regular basis at the moment, although hopefully I'll be able to start picking up on the blogging.

For now, I will share some pictures from a walk I went on with the kiddos the other day. This winter has been so incredibly mild, I almost feel like I'm in a winter from the California High Desert again :).

We've had so many beautiful days that are 50-60 degrees.

Although the temperature doesn't feel like winter, it certainly looks like it with all the bare trees.

Peppy, the llama. He's a funny little character!

O wanted to play a hide-and-seek game on the walk, so we all did.

O's trying to find the rest of the kiddos!

O checking out something up high :).

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Wordless Wednesday: Helping In The Kitchen

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"I'm Sorry"

When someone hears that you have a child with Down syndrome, sometimes they respond with an "I'm Sorry."

There's nothing to be sorry about when you find out someone has a child with DS. Nothing. Sorry that they have a child with an extra chromosome? It's not that big of a deal. Sure, there are challenges that come along with it, but it's not a problem to be sorry about.

Our typical response to this is, "We're sorry everyone doesn't have a kid with Down syndrome."

And that is the truth. We often say this, even around our home, because O is a big blessing to our family. He makes us laugh. He's so happy. It would be good if more people had someone like that in their life.

I thought of this when I was getting O ready for the bed the other night. He was getting his Pajamas on (which are his favorite thing to wear lately :)) and he put them on all by himself. I layed them out for him so that it's very obvious where he needed to put his legs, his arms, etc. After he got them on, he threw his arms up in the air in excitement and jumped up and down with laughter. He was thrilled because he did it all by himself.

Then he put his thumb up and said "O cool" and ran and gave me a big hug.

He was excited over such a little thing. But, it really makes your day when you have someone who is excited about life. Especially the small things.

When he did this, I thought, how could someone say they're sorry we have a child like this?

Don't be sorry for us. We're glad that we have someone with Down syndrome in our life.



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21 Things I'm Thankful For...

First off, Happy Thanksgiving (at least to those readers who are in the US :))!

Since it's Thanksgiving today, I thought I would share 21 things I'm thankful for about O.

I'm thankful....

...That he's my brother
...For all the progress he has made through the years
...That he has Down Syndrome
...For his laugh
...For his smile
...For his hugs & kisses
...That he likes to be cozy & cuddly still
...That he is able to read (even if it's just a few words right now)
...That he speaks in sentences (even if it's not clear to everyone)
...That he can swallow pills
...For how he says "Pajamas"...."Fafafas"
...For the small things in life (like all of the family holding hands while walking that he gets so thrilled about)
...That he likes to clean
...For how he jumps up & down and claps his hands when he's excited
...That God has used the vitamins O takes to help him excel
...That he understands so much
...For how he says "I love you" (I uv woo)
...That he was born into such a large family (it helps him so much!)
...For his health
...That he is potty trained
...That he says Mom, Mommy, Me, My and Molly (they've been such a challenge for him to learn!)

Most of all, I'm thankful that....

God has blessed our family with a child with Down Syndrome.

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Difficulty in Feeding a Baby with Down Syndrome

I received an email a couple days ago from a mother who is having difficulty getting her baby to breastfeed and take the bottle. My mom shared our experience in getting O to nurse here, but I thought I'd share a little more.

We had a very challenging time getting my brother, O, to eat in the early days. He was in the NICU for 2 weeks after he was born and had a gavage tube for much of that time. We finally had the NG tube taken out and my mom went into the NICU every 2 hours to breastfeed him. It was a lot of hard work, but he eventually caught on. Here’s a few thoughts, so hopefully some of this may help:

-Have you gotten in touch with a La Leche Leauge consultant? They have all sorts of tips and info on breastfeeding a baby who is having a difficult time. They helped us A LOT with Osiyyah!

-Have you tried using Nipple Shields? I know it sounds funny, but they help a lot of moms who have babies with a difficult time breastfeeding. You can order them online and a La Leche League consultant should have some or know where to get some.

-Have you tried using a SNS - Supplemental Nursing System? It’s a bottle that has a small tube coming out of it. You put your milk or formula (my mom pumped and used her milk) in it and then tape the tube next to your nipple. So, when your baby is nursing, she will be getting whatever she can from you, but also getting extra from the SNS. It doesn’t come out real fast, so it shouldn’t choke her. You can also use the SNS on your finger or pacifier for her to just suck on.

-Have you tried the Haberman (SpecialNeeds) Feeder? This is used for babies who have difficulty with bottles and nursing. 

-How do you hold her when you breastfeed her or bottle feed her? When my mom breastfed O she would have him in almost a 90 degree sitting angle. It seemed to help him get more down, easier and it wouldn’t drip out of his mouth.





-My mom also would have O's twin sister, Y, nurse until she had a let-down and then Y would get taken off and O would get put on. This milk is called the "hind milk", which is higher in nutrients anyways, but it was also easier for him to nurse because the milk was right there.


There's also a couple things to consider if you have a baby who doesn't want to nurse because they get tired quickly:

-How is the thyroid? A low thyroid (hypothyroidism) is very common in DS and it will cause sluggishness.

Does the baby have a heart condition at all? A heart condition will very often make a baby not want to eat much.

I know it’s very discouraging to see a baby who has little interest in nursing. I know it took a lot of work to get my brother going good on the breast. He had a bottle once, but we did not want him getting it much because we didn’t want him to get used to it. Once we did get him breastfeeding, he nursed until he was 2 years old.

Just keep trying and hopefully the baby will be able to do it well as you keep pushing her along!


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How To Choose What To Give?

I know it can get overwhelming at times as to what supplements to give, how to afford them, etc. Every family has their own set of supplements they give and the reasons why they give them. Yes, some are the same across the board, but you will typically find a variety of additional supplements that each family uses.

When the discussion of different supplements arises on various message boards, one can feel overwhelmed at times as to what to give.

Should I be giving that too? Oh and that supplement? What about this supplement that I just heard so-and-so recommend?

If you gave every supplement every person suggested, the list would be incredibly long and really expensive.

This is the way we do it:

I research things and I look at all the pros and cons of every supplement. Then, I look at what I feel, from research and our current situation, is the most important for O and he takes those supplements.

Longvida Curcumin is a large expense every month, but that one is an "unquestionable" supplement. One that, because of research and what it does for O, we won't do with out.

The "base" supplements he takes are:

Nutrivene-D Daily Supplement & Nighttime Formula
Longvida Curcumin
Ginkgo Biloba
Zinc
Vitamin D
TMG
Blueberry
Methylcobalamin B12
DHA

There are more supplements that O would be taking, if we were able to do it. At some points we do add more on and then that's just factored into what he needs to take. The supplements I would add on, if possible are:

Coenzyme Q10
EGCG
Seabuckthorn (possibly)

But, because I feel O is getting what he needs with the current supplements he takes, I'm not going to stress over not being able to get every good supplement into him.

There are some things he is simply not able to handle, even though they look like they should be good for him, according to research. Like Probiotics, Piracetam, Nutrivene's Daily Enzyme, or Folinic Acid, to name a few.

If your child can't handle a certain supplement, then maybe he will never be able to handle it, so therefore it's not beneficial for him or her. Or, maybe the child is too young and he will be able to have it again as he gets older. Or, maybe he needs a lower dose. It takes a lot of figuring out to see what works best for your child.

There are also some supplements which many families give, even to young babies, that we simply will not use with O. Or, certain dosages of supplements. Because through research that I've done, I don't feel it is safe to give him.

One of those supplements that we would not give, and many people use, is Prozac. There is no way that we are comfortable giving Prozac to O. I'm quite sure there are other supplements as well, but I can't think of any off the top of my head.

There is a certain Ginkgo Biloba dosage that is recommended by the Changing Minds Foundation which I feel is extremely too high of a dosage. So, we give the recommended dosage from Trisomy 21 Research Foundation & Nutrivene.

If there's something I'm not sure of, I'd rather be safe than sorry. It's my brother's health and well being we are trying to help, not damage, in giving him supplements.



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Specs4Us...Erin's World Frames

Over the years, especially since O has had glasses, we've wanted to get the frames specifically designed for children with Down Syndrome.

Specs4Us, with the line of frames called Erin's World, were designed by a mother who works in the optical world and happens to have a daughter with Down syndrome.

As their site states,

SPECS4US was created and founded in 2004 by Maria Dellapina with over 25 years in the optical industry and the mother of a four-year-old with Down syndrome. She saw a definite need for this frame line.  After two years of searching for an eyeglass frame to fit her daughter, Erin, Maria decided to use her knowledge as both an optician and mother to help Erin and others like her.

We've always had to adjust O's glasses SO much every time he gets a new frame, just so that they would stay on his face. We'd adjust the nose pieces, the temples and even have him wear a strap to keep the glasses on. No matter how good we would have his glasses adjusted, within no time they would be slipping down his face. He'd have to push them up constantly or he would be looking over his glasses.

Plastic frames seemed to fit O somewhat better, but they still weren't sufficient. And we were always limited as to how much we could adjust each frame, otherwise they'd push against his eyes too much and his eyelashes would hit them.

So, after awhile, we found a new optical shop and Marilyn at the shop, was willing to try to get these frames and have them covered by O's insurance. Previously, his insurance wouldn't cover them.

After just a bit of talking to the folks at Specs4Us (they were so friendly and very helpful!), they sent Marilyn 4 frames for O to try. Every frame fit his face well, so it was a hard choice as to which one to choose!

But, in the end we finally got a Specs4Us frame for O and it has made a HUGE difference! These frames would work so well just for any little kid who doesn't have much of a nose bridge.

The difference between Erin's World frames and regular frames is explained on their site,

“Erin’s World” is the frame line specially designed to fit children with Down syndrome superior to the typical frame.  Unlike other frames, the bridge is adjusted to fit on their smaller noses and the temples (some people call them arms) are designed to help keep the glasses from constantly slipping.

I took a few pictures of O's Erin's World frames next to his regular frames that he had been wearing so you can see the comparison.

The Erin's World frames are the blue wire frames and his old frames are the black plastic frames.

As you can see in this picture below, the temples are set much lower than the regular frames. And the nose bridge piece is set much lower as well.

 

Erin's World frames are so worth it! They've made a huge difference for O and how he's been able to see. He doesn't have frames that slip down his face anymore. He doesn't have to look over the top of his glasses anymore either.



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31 for 21: Life On The Ranch....Piglets!

Two weeks ago my brother's pig had 9 piglets. They're all doing great and quite fun little babies! A few days ago O and I walked down to the pig pen to take a few pictures and play with the piggies.

Enjoy the pictures!

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