31 for 21: Individual with Down Syndrome Owns His Own Restaurant

(original story here)

KALAMAZOO, MI -- The Arc Community Advocates will host its 6th annual Inclusion Conference Friday, Oct. 12, at the Fetzer Center at Western Michigan University.

The conference will focus on issues related to employment for individuals with disabilities. The main speakers will include an individual with Down Syndrome, Tim Harris, the owner of Tim’s Place in Albuquerque, NM.

"I had a dream for over ten years to own my own restaurant. In October of 2010, my dream came true. It feels great to be working in the restaurant and making a living like my brothers. I want have everyone with a disability to make their dreams come true," says Tim Harris. Mitch Morgan of Fifth/Third Bank will also speak about the success their organization has seen in hiring individuals with disabilities.

According to the Bureau of Labor Statistics, in 2011 only 20.8 percent of individuals with disabilities were participating in the workforce through active employment or receiving unemployment benefits while seeking employment compared with 69.5% of individuals with no disability. The Inclusion Conference will offer workshops for individuals with disabilities to help them gain skills for employment as well as workshops for employers to provide resources, training, and information on employment of individuals with disabilities.

Ellen Stone, Executive Director of The Arc Community Advocates, says, “As we move forward in creating a community where all individuals are accepted and valued, we are excited about the potential for this conference to help close the employment gap for our community.”
Registration is $25 and includes lunch for the day. Registration forms can be found at www.communityadvocates.org or by calling 269-342-9801.

The Arc Community Advocates will also be hosting a free film festival that focuses on films discussing employment of individuals with disabilities on Thursday, Oct. 11, from 7-9 p.m. at Rave Motion Pictures in Downtown Kalamazoo.

Tickets can be picked up in advance at The Arc Community Advocates office, 814 S. Westnedge Ave. or can be obtained at the door.

— Story provided by Arc Community Advocates.

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31 for 21: Re-blog: Through Uncharted Waters

Well, my mom was looking through old blog posts about Longvida Curcumin. And she was wondering when we started O on it and when I first blogged about it. It's amazing how fast the years have gone by.

This whole year, I've been thinking it's just been a year and a half or so since we started using Longvida Curcumin with O. But, looking back at blog posts, it was not May of 2011...no, it was May of 2009 that we started using Longvida Curcumin. Wow, it's been THREE years and 5 months since O started taking Longvida Curcumin. Simply amazing. It feels like just yesterday that I was researching all the details of LC, where to get it from and all of that.

So, I thought it would be good to re-blog a blog I had written in November of 2009. It was titled "Through Uncharted Waters" and was in response to a letter I received from a professor of Medicine and Neurology at UCLA. He had questions and was cautioning about us using Longvida Curcumin with O, because he had DS and was young.

I received an email today from Greg Cole, a professor of Medicine & Neurology at UCLA. He works with Sally Frautschy on Curcumin and other things. He was emailing in regards to Longvida Curcumin and our use of it.

His email was a word of caution. A caution to realize that we are "experimenting" with Longvida Curcumin, as it is not clinically proven to help individuals with DS. There have been no clinical trials done on it's safety & use in people with DS. This is a great concern and word of caution and I totally understand where he is coming from and agree.

Whenever we use a supplement that is not clinically proven in people with DS, we are going through uncharted waters and "experimenting." We always need to be cautious and aware of what we are doing. Aware of any changes that are seen with a certain supplement, be it good or bad. And aware of the dosage we use, whether it is too high or too low, or just right.

We've been on the path of using various supplements and "experimenting" with Osiyyah since he was 8 months old (he's 4 1/2 years old now). The way we feel, is that we have to do everything we can for him. Even if something has not been proven in clinical trials. If the research looks promising, is something that looks like it'll benefit him, and as best we can tell is safe to give him, we give it a try. Of course we don't jump into giving him anything unless we have thoroughly researched and am convinced that it is safe & good to try.

It would be wonderful if clinical trials are done, but we can't wait for clinical trials to be done. My brother's life & understanding is on the line. He needs the help right now. This is why we, and many other families of children with DS, take the initiative to use certain supplements well before they have gone through clinical trials.

If we were to wait until something was proven to help children with DS, it would be YEARS and the most crucial time of Osiyyah's development would be gone. I want to do all I can to help my brother reach his fullest potential. That's what I determined from the time he was born and we knew he had DS. To do any less, would not be beneficial to him.

I am so incredibly thankful that we have taken many out of the norm, against the grain steps, because Osiyyah has progressed so well and benefited from them so much. I am convinced he would not be where he is at today had we not started this journey of research back when he was 8 months old. I know that because he visually, before our eyes changed and was a different child, when we started him on the first supplement back then. Granted, that first supplement is Nutrivene-D. But, still, there are MANY people who advocate not to use that supplement, because it is not "clinically proven." If we would've listened to many of the "professionals" in the DS world, we would not be giving Nutrivene-D. I'm so thankful we didn't listen to them.

There is so much that many families use with their kids with DS that are not clinically proven in DS. But, why are they used by so many families? Because someone took the initiative and stepped out of the box and decided to give that particular thing a try. Those who have taken the initiative into uncharted waters have benefited many families. To name a few, Dr. Turkel, Dixie Lawrence, Dr. Leichtman, Teresa Cody, and others.

Our family will always be thankful for the work of people like Dixie Lawrence & Dr. Leichtman in regards to Nutrivene-D. It changed Osiyyah's life. He is not the boy he was before Nutrivene-D.

Or mom's like Chris Hempel, whose twin daughters have Niemann-Pick Type C disease. That's how we found out about Longvida Curcumin. Longvida Curcumin has changed Osiyyah's life also. He can communicate & understand so much more than he was able to 5 months ago. It's amazing.

We will gladly continue to go through uncharted waters and step out of the box to be able to benefit my wonderful little brother and others with Down syndrome.

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31 for 21: Beating Hearts.

This song, which is sung by some dear friends, sums up how I feel about abortion. It brings me to tears almost every time I listen to it.

To think that people could be so heartless to just kill a baby because they aren't "perfect" or aren't "wanted" is sickening.

92% of babies with DS are aborted. That is just a small number of those babies who are killed.

The modern holocaust has caused the death of over 50 million babies since Roe v. Wade became law.

Sigh.




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31 for 21: The Oral Motor Myths of Down Syndrome

Sara Rosenfeld-Johnson from Talk-Tools is one of the best speech therapists/oral placement therapists for individuals with Down syndrome. Reading her books and papers and using her techniques has proven to be very beneficial for O. In regards to the post about tongue surgery, I thought I would follow it up with one of the best pieces from Sara called, The Oral Motor Myths of Down Syndrome. This was also published in our book, Down Syndrome: What You CAN Do.


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There is a visual impression that each of us holds in our mind when we think of a child or adult with Down Syndrome. As a Speech Pathologist in private practice for twenty-five years and as a continuing education instructor for speech and language pathology classes on Oral Motor Therapy, I have learned that this impression is a powerful teaching aid. When I teach, I ask the participants to tell me what they consider to be the characteristics of a Down Syndrome child, or any low-tone child from an oral-motor point of view; without fail, I get the same responses. Their portrayals have become so predictable I have come to refer to them as the "Myths of Down Syndrome". This is what these professionals see: a high narrow palatal vault, (Myth #1), tongue protrusion (#2), mild to moderate conductive hearing loss (#3), chronic upper respiratory infections (#4), mouth breathing (#5), habitual open mouth posture (#6), and finally, the impression that the child's tongue is too big for its mouth (#7).

These seven structural/functional disorders have been plausibly associated with Down Syndrome, so why label them myths? Because the children my associates and I have worked with over the past fifteen years no longer exhibit these characteristics. The therapeutic community has inadvertently allowed these myths to flourish because we didn't recognize that they could be prevented. These abnormalities emerge in most children by the time they enter early-intervention programs. What has been missing in our treatment which has allowed them to develop? How do we pursue prevention?

A quick review of some oral motor development basics. Children are born with two cranial soft spots. One on the top of the skull at midline and the other under the skull at the midline. Soft spots facilitate the birth process, allowing plates in the skull to overlap, easing the infant's downward progress. After birth, the plates return to original position, eventually joining between 12 and 18 months of age. When the plates meet at the top of the skull, they take the shape of the brain's contour, giving us a round-headed shape. In the Down's population, this closing of plates may not occur until 24 months of age.
The identical closing of plates occurs under the brain in the plates of the hard palate. Just as the brain lends shape to the top of the head, the tongue shapes the palate. During the closing of the palate, if the tongue is not resting habitually inside the mouth, there is nothing to inhibit plate movement toward midline. The result: myth #1, a high, narrow palatal vault.

Can this be prevented? Let's return to the infant at birth. What is not commonly known is that even children with severe low tone at birth, including Down Syndrome, are nose breathers. They maintain their tongues in their mouth and upon examination their tongues are not abnormally large. Orally, these children look pretty much like any other infant with the exception that they have a weak suckle. This critical observation draws us to the connection between feeding muscles and muscles of speech.
In quick order, a cascade of events unfolds for these babies with weak suckle. Many mothers tell me they genuinely wanted to breast feed their newborn but were unable because the child had a weak suckle and/or the mother did not produce sufficient milk. Absent a medical problem, the difficulty is often that the child's suckle was not strong enough to stimulate the mammary glands into producing adequate milk flow.

In this scenario mothers are traditionally encouraged by physicians to use a bottle. Bottle feeding is fine, when done therapeutically, but mothers should be given meaningful choices. Further, when bottle feeding is suggested for these infants, the hole in the nipple is often cross-cut or enlarged to make it easier for the infant to suckle. The child is held in the mother's bent elbow and the bottle is held on a diagonal, nipple down. Visualize this - the milk flows easily into the infant's mouth, but what stops the flow, allowing the child to swallow? Tongue protrusion; myth #2. Excessive tongue protrusion is a learned behavior that creates a physical manifestation.

Keep visualizing this infant with low tone/muscle strength. There is a sphincter muscle at the base of the Eustachian tube whose function is to allow air to enter the middle ear. If weak muscle tone reduces the effectiveness of this sphincter muscle, then in the described feeding position, milk is able to enter the middle ear. The result: chronic otitus media; a primary causative factor in conductive hearing loss; myth #3

Fluid build-up in the middle ear, and the resulting infection, circumfuses throughout mucous membranes of the respiratory system and frequently becomes the originator of chronic upper respiratory infections; myth #4. The nasal cavity becomes blocked, the child transfers from nose breathing to mouth breathing and we have myth #5. The jaw drops to accommodate the mouth breathing, encouraging a chronic open mouth posture; myth #6. Because the tongue is no longer maintained within the closed mouth, the palatal arches have nothing to stop their movement towards midline and we end up with a high, narrow palatal vault, making full circle back to myth #1. The child's tongue remains flaccid in the open mouth posture, at rest. Lack of a properly retracted tongue position is myth #7. This enlarged appearance of the tongue is therefore not genetically coded, but rather the result of a series of care-provider related responses to the very real problem of weak suckle.

Understanding this scenario provides insight into the characteristics seen in these children when speech and language therapists begin to work on correcting their multiple articulation disorders. Addressing the oral muscles/structure from birth offers a more effective, preventative therapy than the wait-and-see approach taken today. These physical features are not predetermined. Our therapeutic goal should be to normalize the oral-motor system through feeding beginning in infancy.

In infancy, nutrition is of primary concern. Our job is to balance nutrition, successful feeding and therapy. Goal one is to change the position in which the child is being fed. Mouths must always be lower than ears to prevent milk flow into Eustachian tubes. The bottle position is altered to introduce the nipple from below the mouth, vertically encouraging a slight chin tuck. In this position the child draws the milk up the nipple predominately with tongue retraction. This position and retractive action prevents milk from flowing freely into the child's mouth. The child no longer needs strong tongue protrusion to enable swallowing. It is also important not to make the hole in the nipple larger.

Can children with weak suckle draw the milk into their mouths in this position? Yes, if you don't use standard glass bottles. Bottles with the disposable liners, in either 4-ounce or 8-ounce sizes, can be filled with either pumped breastmilk or any variety of formula, and the air can be forced out causing a vacuum. This type of bottle can then be fed to the child in an upright position. If the child has trouble drawing the milk up because of weak suckle, you can facilitate the draw by pushing gently on the liner. When I have used this technique with even the most severely impaired children, it has been successful. After a week or so you will be able to push less as the muscles will begin to get stronger. Facilitation is generally eliminated within 3-6 weeks.

Breastfeeding mothers follow the same principles. Hold the child in a position where its mouth is lower than its ears. Stimulate the mammary glands while the child is suckling to increase milk flow. This also enables the mother's milk to come in stronger. As the child's suckle strength increases, the need for gland stimulation will be eliminated.

A simple change in the position relationship of the child's mouth to the bottle/breast can improve long-term oral-motor skill levels. That one change prevents a series of abnormal compensatory patterns to develop. It is so significant that I have incorporated feeding intervention into the treatment of all my clients with oral-motor issues regardless of age or diagnosis. Even my third-grade "regular" kids who are seeing me for an inter-dental lisp work on developing muscle strength and tongue retraction through feeding.

If Speech and Language Pathologists accept the premise that normal speech is superimposed on normal oral structures and functions, then the call to provide early therapeutic feeding intervention takes on an importance that we must both acknowledge and affect.

Originally published in Published in ADVANCE Magazine August 4, 1997; Reprinted with permission from Sara Rosenfeld-Johnson.

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31 for 21: 10th Annual DSAT Buddy Walk is coming up!

The Down Syndrome Association of Tulsa is celebrating their 10th Anniversary of the Buddy Walk this year. Our walk just happens to be on October 21st this year (ya know, Trisomy 21!).

A few fun facts about the DSAT Buddy walk:

-Last year our walk was the 6th largest in the nation.
-We have the largest walk across the whole nation that is entirely staffed by volunteers

I think those are some pretty cool facts! Way to go DSAT!

If you're in Oklahoma, come on out to the walk. Visit the website at this link: www.dsat.org/buddywalkhome.html

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31 for 21: How Do Politics Fit In With Down Syndrome?

I've mentioned a few times the last few months that we have gotten involved as political activists. I try to keep a lot of the details of that off of this blog and just refer over to my other blog. But, this is an important issue and I want to address how politics affects (or can affect) the lives of our loved ones with Down syndrome.

Over the last 4 years, my eyes have been opened to the insanity that is going on in our government. It's never been a surprise that our government is corrupt, but there were things that I thought were good for our nation, when in fact, they are not. An example of that would be the PATRIOT Act, which sounds good on it's face to supposedly keep us safe from terrorists, but is in reality an act with bi-partisan support which basically says "the 4th amendment doesn't matter."

We all know that politicians rarely do what they say they are going to and they don't keep their word. When I came across a politician who actually upheld the Oath that he took to the Constitution, it was a breath of fresh air. That politician's name is Congressman Ron Paul. Through the past few years, I have become enlightened, largely because of Ron Paul, on so many issues facing our nation. Not the least of which is Liberty & Freedom. (If you don't know who Ron Paul is or don't know much about him: Google Ron Paul ;).)



This is where we see how politics can affect or already has affected the lives of individuals with Down syndrome.

To those of us involved in the world of Down syndrome, it's a known fact that 92% of babies prenatally diagnosed with DS are aborted. Such a sick reality. Our current President has continued to promote the killing of innocent lives who are not even able to have a voice. The fact that so many of our politicians - on both sides of the aisle - could care less about these lives, says they don't care about Liberty. For if they did, they would work to protect life, because without life, there is no liberty.

The current administration is working hard to pass the UN Convention on the Rights of Persons with Disabilities (UNCRPD) as well as the UN Convention on the Rights of the Child (UNCRC). A couple years ago I shared about the UNCRC here.

Anytime the UN - *think big government*- gets involved in our Country, it's bad news. The above two Conventions sound all warm and fuzzy, but they are not. These conventions are doing two things: 1) taking the rights of parents and families to raise their and giving it to the state government, the federal government and an international governing body. 2) taking the rights of parents and families on how best to raise and care for an individual with disabilities and giving it to the state government, the federal government and an international governing body.

There is no way I want the government telling me what is best for my brother with Down syndrome. The government has no care for my brother. They don't know his needs. They don't know what is best for him. They don't love him.

Are they going to think that we are doing something which is not in his "best interest" because he doesn't eat wheat or cow-based dairy and therefore force us to feed him something that we know causes him great harm?

Some of you may think I'm out to lunch for saying the above things. But, when the government is given powers that they should not have (according to our Constitution), they are known to abuse it.

I don't want my Nation to ratify these above conventions. The UN can leave America alone, please! Or, I should say, it would be nice if the United States left the UN. But, we must have politicians in office who will stand up to the UN and not allow these treaties to be ratified. Right now, it's a close line on who will stand against these treaties and who will be for them.

This is one reason why it's important that we have elected officials in place who will keep their oath to the Constitution. If we have elected officials in place who will do this, then we would not be sitting on the fence wondering if these treaties would pass - because congress would simply say NO.

Another issue that could greatly impact lives of people with Down syndrome is Obamacare - or government run health care (also known as "Romneycare"). I don't want the government mandating that I must buy health insurance. I also don't want the government telling me that someone has to be on a waiting list for a procedure because their life is not as valuable as others, simply due to them having an extra chromosome. It's very likely that situation could happen with socialized medicine. It's not good.

The overall conclusion as to how politics fits into the realm of Down syndrome is simple: Love.



I will close with this: Do you realize why people like myself got politically involved? It is because I’m not going to sit by and watch our nation be destroyed by politicians who don’t care. I care for our soldiers who are dying as they are sent to useless wars. I care for the lives of unborn babies who are aborted by the thousands. I care for the lives of my brothers, sisters, family, friends and all of you – my fellow citizens.


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31 for 21: Thoughts from a Mom of a 31 year old Girl with Down Syndrome

I received an email a couple weeks ago from a mother who has a daughter with Down syndrome who is 31 years old.

While I do not advocate the use of tongue surgery and I believe it is unnecessary, there may be a time that it is necessary for a particular child. I thought it would be nice to share this mother's story, because it has a neat ending. I will address in other blog posts more about why I feel tongue surgery is unnecessary the majority of the time.

I am a little slow on the blogging but I do have a 31 year old DS daughter and feel good about where we are with her. When she was just three years old we had a tongue reduction surgery done. The surgery was shown on PBS; from England, done on a 12 year old DS boy. I went to a plastic surgeon in Cleveland, Bahman Guyuron, and asked if he could do the surgery. He had never done this but felt it was certainly something that could be beneficial. His words: Imagine if you bite your tongue and it is larger and how your words are slurred. Think about having an extra inch of tongue in your mouth; how would you sound? His speciality was cranial facial surgery; I saw him on a morning show in Cleveland on TV while nursing my new DS baby.

    The reduction for Carrie that time was a pie-shaped wedge cut at the end of her tongue. It was stitched top and bottom. It was done over spring break and she was in the hospital for three days. (I stayed with her and the third day she was running up and down the halls.) The tongue heals quickly and by the time she went back to her preschool at the local school for special needs children she was doing well. I received a note from the speech therapist that week expressing her excitement that Carrie was making so many new sounds.

    Fast forward--Carrie attended regular school but always in a special ed class with some inclusion. She had another tongue surgery at age thirteen as her tongue had become large again. The doctor opted for the same surgery at the end of the tongue but I think he also trimmed the sides as well. As any teenager, this was a major event for Carrie but she healed well.

    Today she works daily at a sheltered workshop. She reads to the little children in an early intervention class once per week and in the same preschool class she attended once a week as well. The children love her! They are very attentive to her reading and I am pleased that she is doing something of value for the children and the parents of those youngsters. It is a win-win for everyone!

    I am saddened that Carrie is the only child I know (with DS) that has had the tongue reduction surgery. Dr. Guyuron has done many more surgeries and spoke at a meeting of the National Down Syndrome Congress some years ago. Carrie is very social and is able to be more social because of her ability to communicate.

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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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31 for 21: October means....

October means a few things....

....Fall is well underway
....the leaves are starting to change color
....the weather is starting to cool

But, it also means....

....it is Down Syndrome Awareness Month
....Buddy walks are going on around the nation
....And it's the 31 for 21 Blog challenge

What is the 31 for 21 challenge? The goal is to blog every day (31 days) in October for Trisomy 21 (Down syndrome). It doesn't have to be about Down syndrome, but the goal is to raise awareness about Down syndrome.

So, here we go! After not having blogged much at all for months....let's see how this goes. Scheduled blog posts will be my friend, I'm sure :).

Just to briefly describe what Down syndrome is....Down syndrome is a genetic anomaly where a child is born with 3 copies of the 21st chromosome instead of the usual 2. The average person has 46 chromosomes - 2 of each. But, a person with Down Syndrome has 47 chromosomes. Because of the extra chromosome, it causes multiple genes/proteins to be overexpressed, which leads to the characteristics (as well as certain health problems) associated with Down syndrome.

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