Sometimes I get emotional when I think about what Jaden means to me. It's so profound trying to explain to other's as I often spend time doing, just how enormously special he is to me. Of course all of our children are precious to us. It's just that my love for Jaden is different. It's a love I want to explain to everyone I meet and to whomever meets him. If I have to break down stereotypes every single day for the rest of my life, I'm up for the task. Hearing Sarah Palin's speech a few nights ago, I was brought to tears. Not because she has a son with Down Syndrome. But because finally, someone on a National Platform could ever so slightly touch on the subject for a second of Down Syndrome and Special Needs. This is a community that needs a large voice and never has there been a greater need. So, thank you Sarah Palin for being that voice and for telling the world what we already know, that your son is "perfect" and that you are grateful to have him. I thank God every day for giving me Jaden just the way he is. For letting me learn, in this life time, lessons I never dreamed I needed to learn. Thank you God, for Jaden. I tell people every day, that Jaden is perfection personified. Just as we all are.
Yesterday, picking up Jaden and Lyla from school, Lyla said, "Mom, some of the girls were telling me that a few kids were making fun of Jaden."
I said, "Lyla, if you ever hear anyone making fun of Jaden, tell them one thing, he's no more different than they are. Everybody has something that makes them different, it's just some things are easier for some people to hide. But everyone has something different, everyone! Remember, God is fair and equal when handing out differences." She said, ok, I'll say that. :)
Ok, I've heard the stories about the "Super Genius" kids with Down Syndrome who start reading and recognizing words at the age of 3, (which is sooner than my typical, I think very bright daughter) but truly was a little skeptical. I've spoken to parents who have told me their child was reading at this early age, and have heard first hand accounts of where, when & how it took place, but still thought "I'll believe it when I see it", I admit it.
Until now. We've been working on letters and words for probably 1 year and a half, and have videos, flash cards, leap frog letter magnets, books, puzzles etc. Jaden has gotten fantastic at enunciating all of his letters and words really well, and I was beginning to think he was recognizing letters but wasn't quite sure. I know he loves all of these activities and loves being read to and trying to read. I aldo know when he watches certain shows, he repeats everything or even says things before they come on the show, but typically It's because I think he has memorized the song or words. Until now.
5 days ago, in Barnes & Noble, I was at the magazine rack sifting through some magazines. He was standing next to me saying letters out loud for several minutes until it had drowned into background noise. Finally I looked down at him and he had a magazine in front of him and he was trying to get my attention. "A", "N", "R", etc. was what Jaden kept saying over and over. He was saying the letters and pointing to them in the headline on the magazine. He kept looking up at me to see if I was going to praise him for his knowledge, but shock took over first. I quickly made him repeat what he had been saying to see if he was truly recognizing the letters. I said, "Jaden, where is the 'A'..." He then pointed to the A and said "A", then pointed to the N and said "N" etc. He was clearly reading all of the letters out loud and pointing to the right ones! I started yelling "You're reading, you're reading!" Until everyone sitting quietly started looking over and started clapping! Jaden was so excited, laughing and clapping back. His sister was so excited as well. What a moment, what a moment!
It's moments like this, that I realize how much I need to know he will be alright. Just when I think I'm completely confident in his abilities and future, I realize I'm not. I do have moments of fear and doubt, even though I don't let these moments take over, I still relish the times when he dispells any doubts I may be feeling. It is the reassurance of knowing he will read, he will talk, he will have a productive, fulfilling, exciting life. Do I need him to read now? Of course not. It's just knowing that he's "getting" it. He's really "getting" it. It is all sinking in. Priceless.
Well If anyone is still out there reading this blog or happens to stop by, I apologize for such a long break since my last entry. Obviously, so much has happened in the last 7 months, however all good! The only reason for my break was work, family, business, family, work, family, and work. I hope to be more regular in my entries again and also hope to be able to fit it into my schedule during the day. I miss reading all of my fellow friends blogs. I have so much to catch up on. In the time that I've been absent, one of my "blogging" friends published a BOOK, another few are pregnant again, some have even had more babies! Unbelievable what happens in such a short period of time. Congratulations and the most happiness to all of you!!!
Here's a quick update with Jaden, now 3-1/2 years old. He's been in a "typical" pre-school up until a month ago and was doing fabulously. The only problem is, he isn't "Fully" potty trained, and can't move up into the next class until he is. Developmentally he's ready to move on, except for this one little thing. He's 80% potty trained at home, but at school, he's not assertive about telling the teachers when he has to go. Unless they ask him regularly, he won't go on the potty. So we pulled him out of school and now have a wonderful woman come to the house who spends 3-4 hours a day with him. She is amazing. She takes him to the park, teaches him reading, writing, music etc. She's his friend and teacher and allows me to work. So, we're hoping he's potty trained soon. Once he is, we'll put him back in school.
I sometimes can't believe the stereotypes with Down Syndrome. The one that doesn't seep to apply to Jaden lately that much is "They're such sweet, lovable, caring people". Yes this is probably true most of the time, however, Jaden would better be described with different adjetives. I would be more quick to say he is feisty, disobedient, rebellious, rambunctious, curious, funny, happy, angry, sad, loud, talkative, and wild! "Sweet, lovable, caring" would be left for other times in describing him. So we have a wild 3 year old at home who is probably like most other 3 year olds and he's doing amazing! His favorite thing to do now is break dance. It's very funny, I'll upload a video soon. When we say "Jaden, break dance", he gets down on the floor and spins around, and break dances. More updates, soon and I look forward to hearing from you, if you're still out there!
Well we are completely ecstatic to announce some big news with Jaden. He's been adapting fabulously at his new school, and he absolutely loves it! His Teachers are AMAZING and so loving! There are never less than 4 teachers for all 12 children. It's such a beautiful environment for him. The teachers can tell us everything he does from the minute he arrives until the minute we pick him up. They give us every detail of his day and are always so proud of him. Usually they have pictures of video of him with the other kids throughout the day. They are constantly emphasizing how he is just like all the other kids and is fitting in beautifully. He follows along with all of the activities and plays very well with the other children. The most exciting thing to report is on his potty training. His teachers can not believe that after only 2 weeks he is going to pee pee on the potty! They bring the kids to the potty throughout the day and said that Jaden is now peeing almost every time they bring him. So, we had to step up our game at home and start being consistent. Jaden has been going on the potty at home for over 6 months, it's just we haven't been consistent. He knows exactly what he's doing when we say "poo poo" or "pee pee", and he even says the words now.
The teachers told us to get on it with him at home, so we have. And wouldn't you know, it's working! We take him 5 minutes after he eats and ask him if he has to go "pee, pee", he says "yes" so we take him to the potty and he waits until his pants are down, then goes on the potty! Then we ask him if he has to go "poo poo", and he'll say "yes" or "no" or "all done". If he says "yes", he then will go poo poo on the potty! The "poo" thing is pretty easy too because he is pretty "regular" with his schedule, morning and night. This is sooo exciting! The thing that I'm most proud of is that he knows how to hold it, and he knows exactly what he's doing. Also, he likes being in control of going to the bathroom because he's really tired of his diapers. We bought him "pull ups" but won't start with those for a few more weeks. We could kick ourselves for not being this consistent many months ago, because honestly, he's been ready for this for at least 6 to 8 months! I honestly didn't know that you were supposed to take them 5 minutes after every meal and after they wake up and before they go to bed. Lyla never potty trained like this, she just "got it" over night, so to speak. We have the potty seat that goes on the toilet and the portable potty to catch him quicker. Most importantly, he's excited!
Well, being that Jaden is having trouble adjusting to school, we've decided to increase it from 3 mornings a week to 5 mornings a week. The original plan was to bring him Tuesday through Thursday. Well, with 4 days off inbetween, the re-adjustment on Tuesday proved to be very difficult for him. So, we've decided to do 5 mornings a week until he can get used to the routine. It's such a beautiful school. Only 6 children per teacher and only 12 kids in the class. There is also one aide during the day to help out. They do music, arts, reading, singing, activities, outside play, etc. I've been going 2 times while he is there to check up on him through the window. Everytime I go there, he's either refusing to eat his food or crying. But, I've been going right around nap time everytime and he's getting used to the nap time schedule which is 2 hours later than his typical nap. So...here, in Jaden's own words, is his experience. I know it will get better, and I really feel this socialization and structure will be very helpful for him. (I hope...)
Here's the Update from Jaden's Post Surgery results. We had his 2 week post op check up yesterday. We told the doctor that we have seen remarkable changes in sleeping and behavior in general. First off, Jaden is sleeping with his mouth closed for the first time since he was born. He no longer snores at all, and is sleeping peacefully and quietly! He is also no longer sticking his tongue out! We gave Dr. Singer a big hug and thanked him for making Jaden feel so much better. Dr. Singer said that after getting the results back from pathology regarding the removed adenoids and tonsils, he was amazed that they were 3 times the size that they should have been and were infected! We would never have known this had it not been for the surgery. I can not say enough how happy we are for Jaden! He also said that there is no more fluid in the ears due to the tubes! He was thrilled with how quickly Jaden healed and how fantastic he looked! We don't have to see him for another 6 months. He is sleeping so peacefully through the night now as well! I highly recommend looking into this if your children are having sleep/congestion issues!
Daddy got Jaden to say "Momma Hot" as a joke, and now he's thinks it's very funny to say, so he keeps doing it! We're already trying to get him to stop making the poopy sound, which we thought was funny because he's potty training right now, but now, he does it non-stop! So, we've switched over to some other phrases! He's getting really good at putting 2 and 3 words together now, so we're obviously very proud of him, and Jaden is very proud of himself as well! We think it's funny!
I've been out of the posting/Reading Picture for a while now because so much has been going on! I hate the fact that I've slacked off with This Blog!
We had My Parents visiting from Ecuador, and then We as a family went to California for a week! I will say, that we absolutely love California and plan on moving to Santa Monica before the end of Summer if all goes well!
Jaden has been doing fantastic, so much talking, running around and just in general being a Typical Boy! Of course everything that goes along with being a "typical 2 year old" isn't so fantastic all the time, but we'll take it, we'll take it! He doesn't like to listen, he loves to do things for a reaction, he loves throwing, yelling and causing comotion, but he does it all with a mischevious grin that turns me into the biggest softy I Vowed I would never be!!!!
It's never too dull around here, that's for sure! The latest update with Jaden is His ENT Dumped Us/Him as a Patient! We received a letter in the mail a few days ago saying that Dr. Kay no longer wanted to see Jaden as a patient because he felt he would be better served elsewhere! I guess it turns out, they thought we didn't want to follow his directive dating back to the first visit when Jaden was 1. I really don't want to bore with all the strange details. But, I must tell you the basics!
Dr. Kay (A very nervous, strange, impatient man By the way), supposedly suggested a repeat visit 2 months after Jaden's initial visit. He claims we decided not to show up, however we never knew we were supposed to return 2 months later, or we would have. First Problem. Of course his office never called to remind or re-schedule this supposed visit. And Trust me, we write down every single appt. for Jaden, so either this was an oversight, or we forgot completely, or he never told us to come back at all, either way we had no idea we missed an appt! Second problem: Visit year 2, Dr. says Jaden's ears look great and everything looks great, tonsils etc. Then he does a hearing test which Jaden fails (even though we know he hears great), says he probably has wax and it could mean he has fluid that he didn't see. So he proceeds to scrape wax out of ears which brings out sounds in Jaden I've never heard as we both hold him down. After all the wax is scraped out, (which is a perfectly normal amount Dr. says), he then does see a small amount of fluid, but no infection or redness. So..he says we can put him on antibiotics to clear fluid. I ask "Why, when there is no infection and from everything I've heard & read, Antibiotics rarely clear fluid and if they do, it returns." to which he says: "Well, antibiotics are all we have right now, yes I am right that they will NOT WORK 91% of the time but DO work 9% of the time." To which Husband and I say, "No thanks, we'll wait to see if fluid clears up." to which Dr. says, "Ok, sounds good, that's fine, we'll re-schedule in 6 weeks." All the while the Dr. never gave Eye contact once, because he was inscribing in his electronic Notebook/scheduler the entire visit, just like the first time we were there. He also kept referring to Jaden as a "Downs Kid" over and over. And I would have corrected him politely and said that since the 1950's people have not been referring to kids with DS as "Downs Kids", but I never could even get a word in as we were rushed out the door.
Problem 3: Next day after 2nd visit, Jaden's ear is bleeding, and filled with dried blood to which I call the office, and trust me, I never call Dr's Offices for Anything!!! To which they said, they could see him in a few days, to which I said, we'll be coming in now beacause my son's ear is bleeding. They were rude, abrupt and condescending and assuming I was exaggerating because afterall, I'm a mom! I said that I wanted to make sure my sons ear drums weren't punctured because he had scraped out the earwax the day before, and now his ear was bleeding. So...I brought him back in to which Dr. Kay (South Florida, Boynton Beach), looked for 2 seconds and said his ears were fine. I then left feeling like this guy didn't give 2 sh.ts about my son!
Problem 4: I called back a week later thinking about adenoids and tonsils and how much difficulty Jaden still has breathing when he is sleeping and how congested he is all the time. After reading so many other parent's stories and experiences and speaking with Jaden's OT who has a Daughter with DS who just had her tonsils and adenoids removed, I decided this was probably a much more proactive approach. So, I called the office to make another appt. to talk with Dr. Kay about Adenoids instead of waiting 6 weeks. I went to the visit the following week and Dr. Kay says when he walks in the door: "Sorry it's me you have to see and not Dr. Spector", To which I said "What, what do you mean?" To which he says: "My notes say that you no longer wanted to see me and that you requested Dr. Spector." I then shook my head and said I had no idea what he meant. (First Big problem, especially since he seemed even more nervous and edgy than usual). I then proceeded to ask him about adenoids and tonsils, and that since Jaden was sleeping at the visit, he could hear what I meant about his breathing. He said, "Yes it's definitely his adenoids causing his congestion, fluid and breathing issues and that 30 years ago when kids had fluid, they just took out adenoids." To which he suggested a sleep study to confirm that it was tonsils and adenoids, or just adenoids causing breathing issues. I said great. He walked me out, I was told to call back next day to schedule sleep study.
Called back next day, was told I would hear from sleep clinic about making an appt. within 24 hours. 5 days later when I hadn't heard from anyone, I called back office to which they informed me, Dr. kay would no longer be seeing us in his office because I did not want to follow protocol and because of Jaden's "Underlying" condition. To which I was told I would be receiving a letter in the mail in a few days. I won't go into what my husband said or did after that, or what I said and did because it doesn't show the best in me, I will just say I was slightly upset.
We have now come to realize that in all of Palm Beach County there are only 2 Pediatric ENT specialists, and in Broward County all of 1!!!!! So...too bad for you if you don't like the ENT and they don't like you, you are completely Screwed!...Now we have scheduled an appt. with an ENT in Broward who was recommended by several other mother's to us, and we have an appt in Early April! Yes, that's right, Early April! If we want to get in sooner, we need to call the office everyday to see if there is an opening for the next day. That's all we can do, too bad for us! Very Frustrating, and I know there are parents who deal with much worse, so trust me, I'm not really complaining. It's just a reminder that our current Medical System is in need of a MAJOR OVERHAUL! Thank goodness Jaden is Ok, and he will be until the appt. but it is a sad state of affairs here in South Florida!
I've decided, upon my Husbands urging, to start posting pictures everyday, of my jewelry. He thinks I don't "show it off" enough. So, I have given in and will try hard to remember to put up pictures of some new pieces. I have been really into making my Rings lately. I am a big fan of Huge Cocktail Rings, and well, anything large in jewelry frankly. So, I'll post a few pictures of some newest rings. I realize jewelry is not saving the world, or anything more than superficial and pretty, but I do love making it!
This Ring is a Gorgeous Large Faceted Smoky Topaz Stone with a beautiful Vermeil Bead Cap. The Ring itself is Gold Filled Wire. I can make it in any size! I sell this style for $25.00! Great Price, Right!? I wholesale my jewelry to Boutiques, so If you know anyone with a store, or if you are interested in anything you see, please email me! I love hearing from you.
This next ring is a Faux Amber Stone, (looks real) with a Vermeil bead Cap and it is on Gold Filled Wire. This one is Super Cool looking On. $25.00
This Final Ring, is One of My Most Favorite Styles to Make. A Swirly Mixture of All Different Faceted Stones, Pearls, Crystals and Glass to make a Huge Fun Cocktail Ring. This one is Faceted Carnelian, Pearls, Quartz, and Crystals with a Hand painted glass Bead in the Center. $25.00
Our Thinking Is Our Only Disability Ever!
Posted by L. Noelle Labels: down syndrome, Eugenics, Jaden, thinking is our disabilityWe've had a great weekend! The Super Bowl is on as I write this and being in Sunny South Florida, it's kind of weird that it is 60degrees outside, windy and rainy! We're getting ready for our trip to Aruba. It's the first time I've ever been away from Jaden, but my Parent's In Law are coming in to watch him and his sister. I'm not worried about the kids as much as I am about me. I am very attached to them. We've never had a Honeymoon, so this is going to be it! I am excited but also a little conflicted about not being able to be with them.
On another note, Jaden has been walking/running everywhere. He seems to really love running when we're not at home. The minute we're in a Restaurant, Store, Outside, Street, he wants to run. And while he's running, he's laughing hysterically and trying to talk. It's so funny how he loves talking when he's walking, and screaming! Very funny. I can't tell you how long we have been stuck between the holding our hands and walking and just letting go and walking faze...About 1 year! Honestly! I knew the second he started letting go, he would be so happy because he's been wanting to be independent since he started standing! He's definitely a Free Spirit, just like his sister.
On an even different note, we met this lovely Couple while out to Breakfast this morning. They were remarking on how cute Jaden was, and how smart he was etc. We started talking and next thing you know we were talking about Education, Health Care "Disabilities", Prenatal Testing and More! What a great conversation. They were visiting from Chicago. I was just passing on some information about how we all need to change our Language when it comes to Differences. Words like "Disabilities", "Special Needs", and "Handicapped" need to be replaced with words like "Different Abilities", "Different Needs", "Differently Abled". I mean afterall, how would any of us feel if we were referred to as Disabled?! It doesn't sound good, or make anyone feel good. One of the Gentlemen I was talking to has been living with HIV for 18 years and has been a Social Worker Counseling HIV positive People and their families within the Prison System! Wow, what a Job! He told me that he is considered Disabled because he has HIV, and that he doesn't like the label!
What a Profound Conversation, I tell you. They agreed Emphatically about how we all need to be discussing the issue of Prenatal Testing and how we are turning into a Society which Turns a Blind Eye to the Eugenics which is Occurring right now!
Imagine if we all changed our language, one person at a time? Imagine the powerful impact we could have if we "Gently" corrected people when they used the words like Handicapped and Disabled? What if we all switched out those words for more positive ones! Pass it on!
Tubes, Tests, Passport, Aruba (Not Necessarily in That Order)
Posted by L. Noelle Labels: adenoids, down syndrome, healthy, heart, Jaden, tonsils
You've Never Seen A Kid Who Loves The Camera More!We got Jaden's Blood Results back yesterday. His annual blood work. Everything was normal. I am always happy to hear that his thyroid is ok. They even test for lead now...Interesting. I didn't know lead exposure was on the rise again, I thought that was years ago a problem. We also took him to the annual ENT to make sure hearing was good. Well, we know he hears fine because he repeats everything we say, he talks non stop, if I call him from another room he looks for me, he responds to every little sound, so we weren't worried. First the DR. checked his ears and said they look fine, as well as everything else. Then he went in for his hearing check which he failed. So the lady said he probably has fluid in his ears. Now, I wouldn't be surprised if he had a little fluid even though he has never had an ear infection, because he does get congested sometimes and does have a runny nose a lot, which we always attribute to some sort of allergies. I'm trying to figure the allergies out. Anyway, he went back into the Dr's chair and he said he would have to take out the ear wax (all "healthy normal" amounts that every child should have he assured us) to get a better look. So, there he went, while Jaden screamed at a level I've never heard him, and his dad held him down, the Dr. took out all of his ear wax! Finally when Jaden caught his breath, the Dr. took another look and did found a "small" amount of fluid in the ear.
Does this look like a kid with Fluid in his ears? I ask you!He explained that he doesn't know how long it's been there since he obviously has no infection now, and other than that his ears look fine, not red or inflamed etc. I then said he's never had an ear infection, how does the fluid get there, he said Jaden HAD to have had an ear infection at one point, that went away on it's own, that we didn't know about, that is why the fluid is there. Wow, that sucks. Poor little guy had an infection at one point, and we had no idea! He never has a fever, always is fine, never complained, tugged at his ear, seemed sick etc. I started thinking back over the last few months with his bad teething bouts..Maybe it was that. The Dr. then said that almost all kids have this problem when they're little because of the size of the ear canal and their physiology. The only thing that can prevent fluid build up is time, they actually have to out grow this problem, he said usually by the age of 3 or so. That is why older kids don't end up with this problem. He said it had nothing to do with DS and that his ear canals were a fine size. So....he said he could prescribe antibiotics which have a 9% effectiveness rate of clearing up the fluid (that's right 9% not 90%!). But, he said it's worth a shot to try and clear up the fluid. I said, if the percentage is only 9% and we know he currently has NO infection, I didn't want the antibiotics. The Dr. said that's fine, let's see him in 6 weeks and see if the fluid clears up on it's own. If not, we will have to consider tubes in the ears.
At The Park on an Unusually Cold Day in FloridaHe then showed us the tubes, about the size of 3 ballpoint pen tips, (super small) he says the procedure takes 5 minutes, and it really makes a huge difference. They can be left in for 6-12 months. That is the most effective way to make sure there is no fluid build up until he can grow out of this problem. Since his hearing is obviously fine and good, the fluid has to come out or his hearing can be permanently affected, all of which I already knew. Honestly, it's no big deal to us. I know he'll have to be sedated, but if the procedure is 5 minutes (2-1/2 minutes each ear he said), then I won't think twice about it. I do know Jaden's weak spot is his sinuses and we've been so fortunate up until now with his health. I am not concerned with a few plastic minuscule things going in his ears to ensure no fluid. So, back in 6 weeks we go to see how his little, perfect ears are, poor little guy. Maybe the fluid will be all gone! He did say he only had a "small amount" which I guess is better than a "large amount", things could be way worse...I always say!
Posing for DadFriday it's his annual Cardiologist exam to see if his little PDA closed. The Dr. said that even if we came back in a year and it hadn't closed, they wouldn't do anything probably because it was so teeny weeny...they could barely see it on the Echo. So..that will be the last of all of his annual DR. visits. I am going to take him to a Holistic Dr. though, and see what we can do about his nasal congestion. We have him eating so healthy, no sugar, no processed foods, pretty much no dairy, no juice unless we juice ourselves, healthy snacks etc. We really try and have a healthy house, that's why I'm pretty perplexed as to what is causing his allergies, if indeed he has them. It could be something in our house. We'll figure it out.
Yah! I will get rid of all of my fluid!On a really good note, my Husband surprised me for our Anniversary/Birthday/Valentines Day (my B-day and Valentines day are the same day) a trip to ..............ARUBA! I knew he was up to something when he said I had to get a passport! We go next week! His parents are coming in from NY to watch the kids! Wow, what an amazing surprise, right! I can't wait. Very exciting. The last place I went out of the country was Mexico, no Bahamas. But that's it for world traveling and me. We definitely want to do more traveling. Nothing like a little trip to break up the Monotony!
I Love My Dad
Dad Love's the Idea
Jaden Loves the IdeaWith a Universal "800" number, any New or Expecting Parent can call, 24 hours a day, this could be a way to take the Uncomfortable, or intimidating feeling out of having to seek out information. If every Doctor's Office and Hospital, instead of giving folders, video tapes and brochures to parents at first, simply gave this One, Simple number to call, informing the parent that on the other end would be All the Newest, Latest, Information, and Local Resources in one place, I think it would be easier for Doctors, Genetic Counselors and Hospitals to remember to give it. ON the other end of the phone would be a Parent, with the Right, up-to-date information, answers, news, local resources and research. Also the parent answering would be able to share their personal experience if the Parent wanted to hear it or asked for it. The information given by the 800 number parents, will all be the same, and verifyed by a Dr. as to make sure everything was accurate and current.
Lyla Loves the Idea too!This is something that could make a huge difference in the Direction Down Syndrome Information is heading in. The Old Way, and Current way of getting information to parents, is still falling short, a New way, perhaps, needs to start. I bet there are a lot of parents out there who would be willing to answer the phone to help out a new parent! I know I would.
Waiting Patiently for Breakfast at our Favorite Restaurant on the BeachYesterday was such a great day for us. Jaden went to his Gymnastics Class in the morning, which he absolutely loves! And he walked all over the place. All the parents were cheering for him and the instructor who has known him since he was 1 year, almost started crying, she was so happy for him. He was really showing off. He is so fearless, it's great. I love the fact that he always jumps right in and does everything the other kids are doing. His coordination is so good now too and his strength is great also.
Daddy loves taking Self-Portraits!I can't wait to get him into pre-school a few mornings a week, because I really think his development will take off from there. He is so social, and when he's around other kids he immediately trys doing what they are doing. Actually, he's kind of the "tough" kid. I was afraid he would be this push over, where other kids would take over and he would just follow, but it's not like that at all. He is so strong willed and opinionated, he knows exactly what he wants, and he won't let anyone push him around. You should see the way he beats on his older sister all the time, she's 5 years older than him and there are times when she is crying. Not that we tolerate that, it's just that part in me that smiles a little knowing he is going to be just fine. It's amazing the stupid stereo-types you have in your head when they announce "He has Down Syndrome." I can't believe how inaccurate they are!
Wondering where the food is, and why is the sun in my eyes?So we're getting some T-Shirts made for Jaden. Here's what they Say:
Front of shirt: I'm smarter than you think! - Back of shirt: Are you smarter than I think?
Front of shirt: I know I'm Cute! - Back of shirt: That's what an Extra Chromosome Will Do!
Front of shirt: How Many Chromosomes You have? - Back of Shirt: I have 47!
Front of shirt: No, I'm not always in a Great Mood! - Back of shirt: Are You?
Front of Shirt: No, I'm not Asian! - Back of Shirt: I just have an extra Chromosome.
(The last one might offend some Asians, but people tell us all the time he looks like Maddox because he has a mohawk sometimes, and they also tell us he looks slightly Asian) We always laugh when we hear this because we know, they don't know!
These are just a few of the one's we have. We have so many more sayings. We think the response will be good because people are aways saying "hi" and kissing Jaden, and he waves and says hi to everyone and kisses everyone, so we think the shirts will really crack people up!
Another Self-Portrait, don't ask how many we have!We are so happy with how Jaden is Talking also. This is the amazing thing about him. Since he was born, the kid hasn't stopped babbling and talking. He has always been amazing at immitating sounds and facial expressions, since he was tiny. Speech is usually the most difficult thing for kids with Down Syndrome, so I have always braced myself for the inevitable, that he would have a lot of difficulty in this area. Yet, all his therapists have always said how remarkable it is for him to immitate the way he does. He has always been gifted in this area. If we say "No" he says "no" and shakes his head, "yes", He says "yes" and nods his head. The thing is, we don't give him expressive gestures to give it away. For example, if I say no, I don't shake my head also, I only say the word. Then he Shakes his head and says "no". I don't know how many words he can say, but if I counted it would be TONS! Obviously we're estatic because he just turned 2! The best part is he recognizes so many things now, and just blurts out the word for it! Sometimes I have to double check to make sure I'm not hearing things! Obviously it doesn't always sound exactly like the word, but we know exactly what he's saying! If there is a cat on the TV, he says, "Cat!", same with baby, doggy, fish, bird, tree, cup, etc. I love it when people say, "He's SOOOO Smart!"... What a Great thing to hear, when that's the antithesis of what you think anyone will ever say! I always think back to his first pediatrition who after he was born, called me to confirm the blood results that he had an extra chromosome, and she told me the news as if she was telling me he had a terminal illness. In fact she was practically crying. That was a pivotal moment for me, I told her "Please don't feel sorry for me, There is Nothing wrong with him, he is active, healthy, smart, funny and super cute! Save your emotions for the parents who really have done a lot of suffering, or are currently." She then told me how brave I was, and how she wishes more parents could have my attitude, and all I thought as I shook my head was, She is the reason parents are so afraid! That was the last time we spoke, I then found my 2nd pediatrition. We're actually on our third now. More about that subject another time!
I actually think he's a genius! We've always said, maybe the extra chromosome has given him an advantage! The other amazing thing about him is he Loves to get us to laugh! He will go out of his way to do some goofy sound, or gesture or expression to get us to laugh, and once we start laughing, he starts!
We love him!
Super Close up
Eating his Corn Puff (Super Healthy and Good)
Showing Mommy his Teeth
Smiling
Well, Since Jaden LOVEs posing for the camera, and I mean he stops everything the minute he sees the camera, I decided to take some good close-ups of him. The only problem is, he kept crawling toward me when I was taking the pictures and they are REALLY close up! I was trying to get a good picture of his teeth to show how straight they have come in, however I couldn't get him to show me.
We got some great news yesterday from his Speech Therapist. She said that he is doing everything right at age level, and we are now working on skills from 2 years to 3 years old. This is so exciting and encouraging. Especially since he just turned 2! Of course if he wasn't doing this well, we would still love him the same and be just as excited for everything he is doing, but everytime I get this sort of encouragement from a "Professional", I get this warm and fuzzy feeling that everything is going to be ok with him. That he won't be this helpless creature when he starts Pre-school, and that he won't need constant help and aid throughout the school years. I want the same thing every parent wants, for him to be self-reliant, self-sufficient and independent in as many ways as possible.
It's interesting because I've said this so many times, but My husband and I don't consider ourselves to have a "Disabled" or "special Needs" kid in any way. The reason is, because he is so easy, so "typical", so "present", "with-it", plays independently, talks etc. When we go to his therapists 3 times a week, we see all sorts of kids coming and going. Some are in wheel chairs, some, you have no idea why they are even in therapy. Some kids will never walk, some will never talk, hear, see, etc. What I have learned from having Jaden is, all these kids have a purpose. It isn't for us to feel sorry for them or their parents, or to wonder why God is so cruel to some people. All things I have felt many times when I've seen kids who seem less fortunate than my own. What I realize is that all of these kids have personalities, souls, expressions, feelings, thoughts and PURPOSE on earth. The startling thing to remember is that Millions of Dollars is spent on Prenatal Testing Research, so that Dr's can better tell parents sooner in the pregnancy what might be "wrong" with their child. Imagine if all of this funding that goes to prenatal test developments, actualy went towards trying to help "cure" or "treat" the existing children that do make it here! Why is the abortion rate at 80-90% for Down Syndrome? Why aren't parents getting encouraging, up-to-date accurate information about what Down Syndrome really means today, instead of what it meant 60 years ago? Why aren't "Genetic Counselors" giving Positive, Uplifting stories that many parents of children try to pass on to expecting parents, instead of just passing on Archaic Information?
When you have the "perfect child" for your first child, and everything goes exactly according to plan, without any illnesses, set backs, errors, everything is meticulous, and by-the-book, it is almost a handicap in itself in a weird way. This is what I now see, what I've come to realize. What happens is, the world congratulates you on your perfect child, everyone is so happy for you, she crawls, eats, talks, walks, plays, interacts and on with your life you go. You brag about all of her accomplishments even though most people don't care, and you feel like you are so lucky to have the "perfect" child and then pity all of those "poor" parents out there who have "less than perfect" children.
You even wonder, if you're like me, how you got so lucky? How is possible after all the "bad" things you've done in your life that you can end up with such a "perfect child"? I know many, many parents who have "perfect children", some have 2, 3, 4 or even 5! How can one family have so many "perfect children"? What did they do to deserve such amazing gifts like this? Something right, i'm sure. Then you enter the "less than perfect" child, the one al the pregnancy magazines and books warn you about. The kid that is caused by not taking all your vitamins, eating all the wrong foods, exposure to the wrong substances, the one all the tests try to screen for, the reason "late term" abortions are legal, the reason parents do abort, give up for adoption. What if that is you? You are the one who gives birth to one of these so called "statistics", "warnings", "diagnoses", "labels", "freaks". Then what? You either have to change your perspective and outlook, or you're in BIG, BIG trouble!!!!!
I'll continue more about this tomorrow.
