Am I Doing Enough? Why Can't My Kid Do That?

I have been thinking about this for a while now, and when I announced here and on facebook that Tessa was walking at 15 months, I knew it was time to write it.

"Mom calm down, I will do things in my own time, just enjoy the little things!!"

When Tessa was born I had no clue what to expect. I had been told to not get my hopes up too much, that typically DS children walk between 2-4 yrs, with 2 being early.
I then started finding blogs, and Facebook pages of other parents of children with DS and seeing what their kids were doing, and how much PT,OT, Speech, and other therapies they were doing and all I could think of was " Oh my god, I am a crappy parent, I am not doing enough for her & oh no, my child is so far behind"
I was seeing other kids close to her age that were rolling over, sitting up, all kinds of things. I would see where parents had multiple therapy sessions a day & every day of the week. I would wonder if Tessa would ever do any of it.

Her Pediatrician would tell me to take everything with a grain of salt and remember she will do it all, in her own time. She would reassure me that even when I was pregnant with Tessa they had a feeling she was not as low tone as most due to her constant & strong movement. Even at birth Tessa was incredibly strong, she has always had very strong legs.

But still I worried. But finally she had a growth explosion and new milestones were met almost every couple weeks. She met most of her milestones close to or shortly after the normal time. Now that she is almost 16 months, she is right on track or past on many things. She doesn't talk other then a few words, but I am not to worried.

I worried about posting about her walking on Facebook and on https://www.facebook.com/#!/NoahsDadcom  because I understand how early she is walking & I also worry that others might wonder if they are doing enough to get their little ones walking.
I have seen some parents post what they have done to help their child achieve their milestones and offer advice.

I am going to be honest about how we got Tessa to walk. It is what worked for us, but every child is different, their amount of tone is different, and I think walking at this young age is rare for DS children.

Tessa never crawled like a regular baby, she spider crawled. Because of this it is easier for her to pull up to stuff, also it made it much easier for her to stand up on her own in the middle of the floor.
Tessa has only had PT, OT, and a Teacher come to the house through the Birth to 3 program, we have not done outside therapy. We tried 2 times when she was 9 months, but she screamed and was scared so we stopped. I take what the PT/OT say and do it to some degree, and then I do what feels right & how I did with my other 2 kids. I have never treated Tessa any different then I did them at her age. I did push her to try, but made it fun as well. I found what motivated her and used that. ( paper, and tons of cheering and clapping)

I hope that other parents don't compare and judge their child's progress or lack of based on what Tessa is doing. Believe me I am so guilty of doing that, I did it for the first 9 months of her life. I would get very sad that she wasn't doing something others were doing.

There are many things she isn't doing, and I still some days wonder why she can't master those simple skills.

Tessa can not:
Drink through a straw
Drink from a regular sippy cup, hers is closer to her bottle nipple. ( that dang tongue gets in the way)
She can not use silverware to feed herself, she still uses her hands so has to be fed the messy things. ( applesauce, yogurt)
She only has 2 teeth on the bottom
She only signs a few things and not correctly, we have learned to interpret what she really means

I hope that I can learn to not compare her to others anymore, I am getting better, but their is still a small part of me that gets jealous when I hear of others mastering the skills she just can't.
I hope others don't feel the same way I do, and have felt in the past.

I am slowly learning to let things go, and really see the beauty in the little things, because in Tessa's world the little things really are BIG!
It is so easy for me to get excited and celebrate other DS children's accomplishments, then to see how far Tessa has come in such a short time.
I will admit, I sometimes see their accomplishments as Tessa's failures.

And before anyone gets all worked up, I don't see Tessa as a failure, I feel more like the failure because I wonder if I did more she would do more.
I feel guilt that she has to work so hard and struggles sometimes.

But, I am learning to not be this way. Tessa is amazing, strong, stubborn & so very determined to do everything. I am so proud of her, and I am learning that I am doing enough for her. What is enough for her might not be enough for another child, but that is because they are all their own person, with their own strengths & weaknesses.
I will continue to "brag" about her new milestones & accomplishments, celebrate them for the wonder they are, I hope everyone else celebrates with her too.
I will also continue to celebrate and cheer on all our new DS friends with each and every new milestone & accomplishment they have too. I feel great amount of happiness & amazement at all our little friends are doing.

What Just Happened???

When I started this blog I said my life can be funny, and some days I wonder if I am on a hidden camera show.

Today is one of those days. Actually my day was fine, it is this evening that has me shaking my head and laughing cause I don't want to cry in front of the kids.

I have waited for the day Tessa would be mobile, and since that day I have learned to be careful what you wish for. She is a little wrecking crew, and leaves a path of destruction everywhere she goes. I am constantly stopping her from knocking crap over on top of herself. She has been to the ER once for tipping a TV tray over and it landed on her face. She was just fine.

Tonight Tessa is cranky from not taking a nap. ( her choice not mine). Travis was sitting at the center island eating a bowl of cereal ( just started) and Kaden was upstairs, I was right next to the kitchen on my computer, and Dennis is working late.
All of a sudden I hear Travis say "Tessa, NO!" and then I hear a huge crash! I look over at the Kitchen to see Tessa on the floor, the 3 tiered cart full of school supplies & a Texas shaped basket that was on top of it all on top of Tessa (almost, Travis caught most of it). I run into the kitchen to see Tessa fine, I grab her, call Kaden down to play with her while she is in the Pack-n-Play.
I go back into the kitchen to see little yellow things on the floor, not sure what they are, Travis is picking stuff up, and then I see it.....


Yes, that is the Texas shaped basket, and yes, that is also milk!



See the milk is almost all gone from the bowl, and it is all over the stuff I should have cleaned off of there a long time ago!



More mess, and that is the cart she tipped over!

When Travis was jumping up to save Tessa, he spilled his cereal all over the counter, floor, mail on the counter. I knew I should have gone through all the crap on the center island. All I could do was laugh, because I wanted to cry.
So while cleaning it up Kaden is playing with Tessa, she is completely unharmed and oblivious to what has happened, until........
I hear Tessa start crying and I ask Kaden what happened, he won't answer me and is backing away from the pack-n-play! Uh-Oh.. Kaden tells me he accidentally dropped a toy on Tessa's head.

I think if this is how my mothers day weekend is going to go, I might just want to make a quick run to the liquor store right now.
Life around her is never boring.

Tessa Has A Surprise For You!!!

Tessa has been an amazing fighter since the day she was born. She is so full of spunk and is going to do what she wants when she wants. I always joke that someone forgot to give her the memo that she has DS.

She has always met her milestone close to when she should have, and always did it in pure Tessa style. I always wanted her to be walking by the time we take her to Disney World in October of 2013, she will be 2 1/2 by then. I had told PT/OT this was my goal with her, and I became saddened and a bit discouraged when they said  "most children with DS walk between 2 and 4 yrs. That I shouldn't get my hopes up." I felt crushed because I had never heard that, and the thought of her not walking till then was hard to accept.
We had PT/OT and I did most of the things they said to do, but I also just treated her like I did the boys, and did what I did with the older 2. She sat up when she was ready, she never crawled like babies do, she had her own way of doing it, and she didn't care what others thought. She eventually learned to pull up to things and walk along them. Then one day she stood up in the middle of the floor, I was so surprised!! She would also take 2 to 3 step, and we have been working hard to get her to do more. Sometimes she would do a few more, and I couldn't wait to be able to say she was walking.
Yay Tessa!!!


Little did I know my little girl had more big surprises up her sleeve.....

PT/OT came today, and they officially declared what I have dreamed about and wished for since Tessa was born.

TESSA IS WALKING!!!!!!!

It brings tears to my eyes to even type it. Tessa is only 15 months and 1 week old. She walks across the living room, she stands up, sometimes with toys in her hands and walks. When she is feeling stubborn or is tired she does her version of crawling, but she is walking more and more.This just started to be a constant thing in just the last week or so.




 Watch out world here I come!!!



15 Months & Rude People

Tessa is 15 months!! I don't know what day we are to say she officially is seeing as how April only has 30 days and she was born on the 31st. But it is now the 3rd so we are good!

First some stats on Miss Tessa.

She was born 4 weeks early weighing a whole 4 pounds 7 ounces, and was 18 1/2 inches long. He tiny little head was only 11 inches.

She is now 17 pounds 12 ounces, 29 inches and her head is 16 1/4 inches. She has gotten so big, yet she is so very tiny still. She is the size of a typical 9 month old, in fact her brothers were this size at 9 to 10 months.
She is doing great, but she did lose some weight since her last visit. We are not concerned since she has become very mobile since then.
Tessa is meeting all the milestones of a 15 month old without DS! And she is exceeding a few. They have said she does not have low tone in her legs, and is very strong. She showed the Nurse Practitioner how she stands up in the middle of the floor, then squats down to pick up something, then walks a few steps to the chair or where ever it is she is going.
It really isn't long before she is walking, she does it more and more here at home and goes farther each time.

She is doing great, we have her totally off Zantac, and she is finally able to handle whole milk without formula mixed. We have to start giving her a vitamin, and will be giving her a My First Flintstones, but I have to crush it up since she only has 2 teeth. Poor baby got her 3 shots and was a bit mad that they did that.

Now for the Rude People part:

I had Tessa in her stroller and she had her glasses on when we walked in the clinic. This is a Pediatric clinic, so it is all kids ( and their parents). There was a woman and her daughter checking in, in front of us. They girl looked to be about 10 and was a very sweet girl, her mother however needs to learn to not say exactly what she is thinking out loud.
I walk in the mom turned around looked at Tessa, and Tessa smiled at her, the mom then does a double take, starts laughing very hard and loudly and says to her daughter, "oh my god you have to see this baby, I haven't seen anything so funny in my life." Her daughter doesn't turn around so she again taps her daughter and says, " oh my god you have to look at this baby, I have never seen anything so funny."
By this time I am ready to say what I am thinking and punch the woman, but instead I give her a very dirty look, her daughter looked very embarrassed by her mom.
I then went up to the desk to check us in and said "Tessa is here!" the receptionist said oh my goodness, Tessa you just keep getting cuter and cuter, to which Miss Tessa smiled about.
I have been going to this clinic for aver 14 yrs, and worked there for 3 1/2 yrs, they all know me there, and I think they knew I was a bit pissed off at this woman

I am so surprised at this woman, how would she have liked it if someone said that about her child?  I don't for a minute think she was trying to say Tessa looked cute, I have had parents come up and say they think she is cute. I have had people stare, whisper and turn away when I look at them because I can see them staring, pointing and whispering.
I think perhaps some people look at Tessa and think "oh god, I am so glad that isn't me" or "poor baby". I understand this, because before I had Tessa I would see a child with DS or another disability and think "oh god I am so thankful my kids are fine." To some, and I was one of them at one point, Tessa is their worst nightmare. There are not many or probably any moms that while pregnant say " Oh I really hope my child has DS or is disabled in some way."

I do get it, but I don't get how some people think it is OK to stare or worse laugh at my daughter to her face & mine!!!
I will either have to get thicker skin or perhaps on occasion speak my mind to them as well.

Sick kid, College info, Life....

Just when I think I am having a slow day or a slow week life throws me a curve ball.

I thought this week was going to be a simple, quiet one. Tessa had her teacher come today and Friday we have a Orthopedic eval. That is it nothing more, simple!

Last night Kaden comes down to tell me his shirt is sticking to him, OK it is humid upstairs. Imagine my surprise when he took his shirt off and he is covered on his chest and back with a red bumpy rash. I used a cool wash cloth to cool him down, then out a fan blowing on him. This morning he still has it. I throw him in the shower and still there.
Check with school nurse, he can stay at school. Great.
Tessa's teacher comes, good visit, nap, and run pick the boys up, and hurry to the Dr.
Kaden might have strep, thus the rash, but..he also is getting a ear infection too. Thankfully we got meds, problem solved.

Travis brings home a card with info about college and the school is having a thing for parents tomorrow night. Wonderful, I wasn't planning on going, but think it might be a bad choice not to. Quick call to Dennis to see if he could watch the 2 younger ones, looks like it is possible. Great, check one more thing off my list.

This time of year is like this. I look at my calendar and it has maybe 2 or 3 things on it, then out of the blue I am adding things for almost everyday of the week. It is like this till school gets out, then it is calm and relaxing.
Sadly I don't see this happening this year, Tessa will continue with PT, OT, Teacher, Speech, various Dr appointments, then for added fun Travis will be taking Drivers Ed too.


At this rate when October 2013 finally rolls around we all will need our vacation big time.

They Just Keep Growing

Some days I wish my kids were a bit older or more mature for one reason or another, and others I wish they would slow down. With Travis I am torn, I love seeing him grow and mature, yet feel like I can't always remember every little detail when he was a baby, the moments I never wanted to forget.

Yesterday I went to Travis's annual IEP meeting. I always am a bit worried before these cause I am never sure what they are going to say. The trend lately everywhere is to push these kids off their IEP's cause it saves the schools money in the long run. So far we have been lucky that he seems to hang on to that last little bit of their guidelines to qualify. As most with kids that have Aspergers or really any disability when it comes to schools a diagnosis from a medical professional means nothing when trying to get services in the school. They have to meet educational guidelines, and they are not always easy to meet. Most parents are forced to fight the schools just like we fight insurance companies.

Elementary school and Middle school were always tough for Travis, he was bullied and generally picked on for no reason other then he was "different". I was very upset when I found out that he would not be going to the same High school as most of his friends. Friends he had been in school with since 1st grade. But in the long run it is actually working out to be a great thing. He still sees the friends he isn't with and still has some he knows at his school, but the bigger thing is he has made many new ones. He joined the Robotics Club, has had some amazing teachers who have inspired him .

At yesterdays IEP meeting they had his case worker, his guidance counselors  , and 3 different teachers came in during the meeting. The very good news is Travis still qualifies for services, but he will have the amount of time he spends with his case worker greatly reduced. This is good because he has been missing out on some classes he wanted because he was losing a whole class period everyday.

 His electronics teacher said he wants him to take a certain class next year based on his performance and potential and said that sometimes they cancel classes if there are not enough kids signed up but he is going to make sure this one doesn't and that Travis gets in it. He also said Travis is doing better in his class then all the other kids and in fact has many extra credit points, where his grade is beyond an A+.

Then his History teacher came in she said she is so excited for Travis because she recommended he take AP History next year. While it is much harder she really believes he can do it, and because he loves History so much he will thrive in this class. I am excited because I feel he sometimes he isn't challenged enough & at the end of the year he will have a chance to test out and get college credit as well as high school credit. She said he is a wonderful student and if everyone of her students were like him her job would be so easy.

Next was his Physics teacher. He said he is very impressed with Travis and it has been many years since he has had a student like Travis. When they are doing things in class he said Travis will ask many questions and the other kids get looks on their faces like "Hmmm. I never thought of that." He said that on many occasions Travis will ask questions that he has to stop and think about the answer or he needs to find out cause he doesn't know. He says Travis is very inventive and takes a leadership role in the class.

The only negative anyone said was sometimes he turns his work in late, not often but sometime. We discussed this and found it is an organizational issue and while kids aren't allowed to carry a backpack in school they do have exceptions and those kids are given a backpack pass. This is something we are considering.
I was in complete shock over some of the things the teachers were telling me, because Travis is a very shy, nervous kid. To hear he is taking a leadership role and one commented he seemed very confident, was not the kid I have know for these past almost 15 years.

However the more I have thought about all this, there more it really isn't shocking. Travis has grown and matured A LOT in the past year. He isn't my little boy anymore, and he has become more confident and independent. He knows what he wants to do in his life and he is on the path to make sure he gets it. He is already thinking about college, and knows he most likely will be going to one far from home. This is something he is OK with and doesn't see any issue with it.
Travis has become his own person, with his own mind and thoughts, and I have learned to let him go and continue to grow and mature. He has strong opinions about many things and isn't afraid to voice them. I sometimes have to take a step back and wonder who is this and where did quiet, shy Travis go?
I am so proud of him, and proud of who he is becoming and I am excited to see where he goes. I think people who haven't been seen him or been around him in a while will be surprised as well.

Soon he will be driving, graduating and going off to college, and next thing I know he will be married with kids. I use to worry about my kids growing up and moving away, but I have to say the thought of Travis going off to college doesn't scare me anymore. I find I am so excited to see him go because he is so eager to learn and grow that I feel he is destine to do great things. I was told my someone when he as a baby that they had this feeling that Travis was special, and that he was meant to do great things and make a huge impact and difference in this world. I didn't think much of it, but I have to agree now. Something about him is different, he thinks a lot and challenges even the teachers to think hard and sometimes outside of the box.

Look Out World, Travis is coming and he has a plan and mission!!

Why???

I have many ideas for a new post, and had planned on writing about one of them, until last night.

First a little background. I have not spoken to or seen my mother since August, and then it was a few words and only for a 10 minute time. This is also the last time she saw or talked to my kids. Had we not been at a funeral for my great Aunt this wouldn't have taken place. The back story to all of this is LONG, and I may post about it at a later time. For now I will say it was a decision that was long over due, and I haven't regretted making in one bit. Since this choice I also am not friends with her on Facebook, however I had my privacy settings so she could see pictures of the kids if she figured out how to do it.
I trusted the people I am friends with on Facebook to not save and share pictures of my kids without my permission.
Last night I learned that isn't a good idea. Imagine my surprise when I looked at my mothers facebook page and see she has right there on her page a picture of my daughter, with her email address above it and she also has commented on the picture on her own page.
Now the funny thing is I text 2 people that I think might have saved the pictures and sent them to her, neither respond, however within 5 minutes of these texts the picture comes down. I spoke with one of the people and feel comfortable that she didn't do it. I really hope I am right too.
I am so hurt and angry someone would do this. I would never do something like this to any ones child's picture. I also have to wonder just how many pictures were sent. There is a reason I never send her any, please respect that!!!!

I have changed some settings on facebook, and  I am hoping I don't have to delete the pictures completely. I have made many friends within the Down syndrome community on there and enjoy sharing Tessa's accomplishments and pictures with them.

I am saddened by this whole thing, and find my trust in people has been damaged. I just wish people would be more respectful. I have a ton on my plate this week and this is not something I wanted to be dealing with.

I have thought a lot about this all night, ( Tessa didn't sleep much, I'm running on 1 1/2 hours of sleep) and I need to just continue on and take action when and if I see the need. I just want to live my life the way I have chosen, and wish people would stay out of the choice my husband and I have made regarding my mother and her contact with us & the kids. Trust me, I have very good reasons for this.
I hope who ever is behind this realizes what an ass they really are, and how far they crossed the line on this.

As for me, I intend to keep doing what I do, and will resume my silly life & sharing the good and bad with all of you.