Evaluation - A gentle giant...????

 

Yesterday was Ethan’s evaluation at school.

Overall I am very pleased with his results.

I don’t have the actual evaluation with me so I am not able to relate the actual testing on here just yet. Hopefully I’ll have it later today and correct any information that is wrong.

Ethan is also evaluated yearly through ECI and at the Down Syndrome Clinic here in Houston, although we skipped our last appointment. Everyone has different views on the DS clinic, I do believe it offers great resources to other families but not necessarily to us. In my own experience they are able to evaluate our children and offer referrals. Well, I don’t find their evaluations very helpful since I feel they don’t see Ethan often enough to accurately tell me his strengths and weaknesses and as far as referrals our pediatrician has been very helpful in providing us with any other specialist (although we still need an endocrinologist –but it tough getting an appointment at Texas Children’s). Then again, Ethan doesn’t possess many health complications where we might have to be seeing more doctors, if that was the case maybe the DS clinic would come in more handy. Regardless I know the Ds Clinic has an awesome caring staff and a great valuable resource to the Ds community and we are very lucky to have a facility as such here in Houston.

And as far as his ECI evaluations, I do find them to be more accurate than the Ds clinic but not as thorough as it could be. The Rise school definitely provided a great evaluation with every concern answered before I even asked it.

They see my little guy every day, they see him on his bad days and on his good days, they know of all the great things he is able to do. His lowest mark was in the communication area, they evaluate him in different areas in communication so he ranged from 9 months to 17 months and I would totally I agree. He is not talking so that definitely puts him at a younger age developmentally along with the fact that he only has a handful of signs. He is very willing to learn and I know as long as we keep introducing signs he will keep picking them up, and hopefully real words will come in eventually. He can’t quite point to all the body parts (nose, mouth, feet and hands might be the only ones he knows) but I strongly believe we’ll get there sometime next year.

His adaptive skills were also on the “lower” side (not as low as 9months though, I believe 12 months if I remember correctly) but I already see him improving daily in that area. He is a great self eater and drinker and he is starting to attempt to dress himself, he might not be able to take off his shirt on command but he can definitely take off his bottoms and diaper in a split second. One of his goals is to give his empty plate to an adult when he is done eating, well he just (like in a matter of days) started to put his own empty dish in the sink. I think his adaptive skills will sky rocket in the next few months. He has become so independent in certain areas that it is frightening. He refuses to eat in his highchair now and likes to sit at his little table all by himself –DO NOT go near him while he eats, he needs his space. He'll even point me away. 

His motor skills are pretty awesome and his fine motor skills still need some adjustments, although his pincher grasp is (apparently) something to brag about! One of his goals is to walk backwards… I guess Ethan has decided that he does NOT want to show his teachers and peers how well he can moonwalk. The kid walks backwards on a daily basis at home as he tries to walk away from me after being naughty.  He finds it hilarious –and who am I kidding, so do I! I actually tried to get him to do it this morning for his teacher, but of course he was being a little stinker. They will be changing his goal now since he has already mastered that task.

I was most impressed that we are all on the same page and that no one is overlooking anything that he is or isn’t doing and that I completely agree with their findings. Sometimes as a parent you might second guess yourself and question whether you are doing something right or wrong, but when a team of people tell you the same thing then that offers some peace of mind.

And I am completely ok with the lower developmental age rankings, I know it. I accept that it is what it is and I cannot help Ethan unless I can fully be ok and understanding of his developmental delays. This is how we will overcome it, by working on his delays rather than dwelling on it. And that is simply my approach, it doesn’t make it better or worse than anyone else’s approach. I know some people become sad when they hear where their child is developmentally and it is ok to be sad. My husband actually told me he was a little sad when he heard how low he “scored” in the communication area. And it is OK. But we can’t dwell on those negative feelings, instead we are going to take that information and overcome those hurdles. (ok hunny… Ethan is badazz, and you know it!)

He is an awesome kid and they all agree he is super cute and charming but that I already knew!  He was also described as a gentle giant –I laughed at that one, there is no gentle giant at home. Rough and tough is all we get at home.  From what they said they have some pretty high goals for Ethan especially for the classroom that he is in. Ethan aims to please so he will get there -when he feels like it.

I truly believe in my heart that Ethan is destined to an amazing level of greatness… My super amazing child.

Because I am SO crafty…

I don’t know what happens sometimes, but sometimes I feel soooo crafty. Just the other night I stayed up till midnight making the girls hair bows… and a Christmas tutu…. A tutu for who… ??? I don’t know, I just wanted to make it and Ethan was happy to model it the next day. Hilarious.

But I also made these other Christmas ones:

 This one is huge so it looks better as a pony tail holder.

(Isn't she so pretty... took her to get her haircut last night ans is totally rocking some bangs.)

 And the girls are just dying for after Thanksgiving to wear these!

And look at my Thanksgiving area –cute eh!

 I made those cake stands with old candle holders and silver trays.

 

I’ve also been on a spray paint kick… but that’s another story. 

The month of giving thanks - Holiday Decor

I know I haven’t been too up to date with this whole Thanksgiving thing, but seriously I already had a head start than most of you since I started working on my Thanksgiving crafts the weekend before Halloween! So HA! And rest assured, I am very thankful for many things, today and every day.

And since it has just been confirmed, Thanksgiving will be at our house, I am working on a few extra touches to add to the house. We havent had Thanksgiving at our house for maybe 5 or 6 years, so yeah I am excited.  That also means something is brewing that hopefully my guest will enjoy (insert evil laugh!!!). I am just giddy with the thoughts of some of the things I want to do! And it all needs to be done by this weekend, because then it is time to start working on Christmas stuff! (Dear Hubby, we need to work on the play room so I can work on my craft section so I can stop crafting in the kitchen and living room….)

-And speaking of the Husband, today is his birthday! Happy Birthday HUNBUN. Thank you so much, especially these last few days, I am very proud of you and you know I LOVE you dearly. XOoXXxxOo (Nacho Libre…hehe)

I surprised him at work today with Jack in the Box breakfast, along with 2 chocolate overload cakes from there! Some of you might think, “WHAT, JIB??? Seriously??? Is that all you can do…?” And the answer is yes. I work full time, I have limited time to cook or bake, I have to take the girls to school at 7:30am then drop off Ethan off at his school, then try to be at work by 8:30am. And the husband is very grateful for the things I do manage to do, like breakfast this morning because he knows how hectic our lives are. He’s pretty awesome for being so understanding of our circumstances and not being one of those overly demanding husbands that expects you to be in the kitchen all day long, even though you have a full time job as well. Yeah, he’s a pretty cool guy.

Here is a peak of how things are coming along.. .I also have a “thankful” banner I made…somewhere else in the house. There is no spellcheck when you use a pencil to write words… so originally my banner said “THANKFULL” yup, it did.( I am thinking a Thanksgiving tree under the turkeys...)

 

I had seen this (the turkey family) on Pinterest,

Source: eighteen25.blogspot.com via Erika on Pinterest

and I remembered I had just found this picture frame in the entryway closet and we went to work! Each family member traced their hands and we colored them to look like Turkey’s. Of course Ethan had to be placed after his Daddy, that is Daddy’s shadow.  My super cute turkeys!

 I made the big medallion thing by rolling card stock into cones and gluing it all together. I am going to add more of the little fan ones.

Pictures of us I edited and framed. I LOVE. (I even made a tshirt flower and taped it on the frame. I made it while watching American Horror Story... anyone else watch that show?...creepy!)

 

 My house is like a cave and everything is so friggin dark! 

Here is what this picture looks like:

This one is also framed, but its away from this area... I regret going so dark on it, but I still dig the picture!

There is seriously something about being able to use things related to my family to use as décor that totally just rocks my socks… along with handmade crafty stuff…

Today, I am thankful for Pinterest!

-erika

The beautiful face of Down syndrome - another confession

I have a confession (yes another one).

What -TWO posts in ONE DAY!!!??? Yeah I know… pigs fly as well… but I was looking at some recent pictures of Ethan and I can’t get over how handsome my little boy is. Which led to some feelings I had when I was pregnant.

When I was pregnant with Ethan and we were told my screening test was positive and had a marker for Down syndrome, soon after I googled “children with down syndrome” and got all sorts of pages up. Some of which had tiny faces of children with Down syndrome.

Can I confess that when I seen those faces I cried. 

 I cried because I did NOT want my child to have Down syndrome, I did NOT want my child to look like “them”.

I got on online forums and read people’s stories, some parents insisted on deeply loving their child, saying  “I LOVE my child with Down syndrome, they are my world…” clearly I though, those people are delusional. How can someone ever love a child like “that” to that extent.

And I cried some more.

Deep down inside I just knew that Ethan would have Down syndrome although we hoped for the “best”. I didn’t necessarily pray that he did or did not have Ds, I left that up to God… but I did hope he didn’t.

Well thank God that everything was in His hands and not mine. No decision was left up to me, this is what He gifted me with and I was going to accept it no matter what.

Now I look at these children with Down syndrome and I see a beauty that no words could ever describe. I am so ashamed that at one point I was judging these children based on their looks. In my defense I was uneducated about these individuals. I never had anyone to speak the truth to me about people with Down syndrome. I never knew what an individual with Ds was capable of. I never knew how alike they were to me and in a way superior to me.

I am so ashamed of who I was before my son, but thank God that he is mine and that I am no longer the same person.

And now I see my son, so beautiful, with the most gorgeous brown eyes that are the shape of slanted almonds, his soft tiny ears that I caress at night… a face of an angel. But he is more than just an angel face, he is a person full of life and persistence…and I admire him.

He is my world –and I am NOT delusional. 

-erika 


and dont forget to read my other post from today - help Sophia get home!

Wishful Wednesday - For Sophia to meet her mom

I know I am blessed… even on bad days, I am blessed.

I am grateful to have my children –safe and sound under my arms, loved and cared for by me every single day.

All you parents out there, you know what I am talking about. I don’t have to go into details of what I feel, because most obviously you all feel the same. And for those of you that have children with Down syndrome or some other condition or different ability, you know exactly what it is to love a child that the world deems to be different.

I am thankful to have my children and to be able to cherish and love them daily.

One day I hope to adopt a child with Down syndrome. Emotionally we are there, financially –not even close. 

I am extremely moved by those that do adopt, especially children with special needs. Then there are people like my friend Megan, who is a single mother and is in the process of bringing her sweet Sophia home from Eastern Europe.

Sweet Sophia is slightly older than Ethan and also has Down syndrome. Megan has SO much money to raise before she has to travel, an outrages amount of money, but I know that with God everything is possible.

To some of you that means nothing, but to me that means the world. That a woman could love a child so much… a women that doesn’t have any biological children, yet she chose to adopt this sweet precious girl that is so much like my son. That moves me to tears and I am grateful that Megan has been moved and touched by God to bring this precious child home.  

There are times that I am at home and wrestling and tickling Ethan, and as I hear his sweet laughter that radiates through my body, occasionally, I think of Megan, I think about all of these little laughs she does not get with Sophia and I yearn for her to feel the same wave of love.

I wish I could do more for Megan.

All I can do is share her story and blog (My Journey of The Heart is her blog). I hope you can consider donating to her adoption fund. A generous person has offered to match donations up to $1000 between now and Thanksgiving. I hope you can give at least FIVE DOLLARS ($5)… your $5 will then be matched and be $10. Five dollars is saving a life. I beg for you to PLEASE consider.

Thank you –deeply,

Erika

Taylor Swift Concert & A Rather Embarrassing Confession - Weight

This year, our Buddy Walk will be held at Minute Maid Park on December 3 (in the Diamond Lot, outside of Minute Maid Park.) So having our BW there has had some perks! One being that they provided DSAH with Taylor Swift tickets for last Saturday! Woohoo! I was able to take my girls and baby sister to the ever-so-awesome concert.

Gabby was over the moon about going! It was definitely a great concert, TS definitely put on a theatrical type of show. Andrea was not so fascinated and fell asleep (eh, what do you expect from a 7yr old) but Gabby rocked on the entire night. She sang just about every song and screamed till she almost turned blue.

Me and the girls haven't had a night out like that in a while and I definitely appreciate being able to have some girl time with my girlies. Especially with Gabby who is just growing faster than any parent ever wants their baby to grow up. She is a beautiful child with a heart of gold. She impresses me with her words and actions. I pray that God continues to give me the strength and wisdom to effectively raise this child and I pray that God guides her in her journey as well. 

Isn't she just too cute!!! Ahhh... I hope them boys stay away for another 10yrs!

and my baby girl... that fell asleep!

Guest appearance, Nelly - singing Just a Dream.

***PLEASE DON'T FORGET TO DONATE (and/or register to walk) TO ETHAN'S JACKRABBITS!

DONATE HERE!

We appreciate all that DSAH does for us and our community, thank you all for your support! MUCH appreciated!

*Weight – A rather embarrassing confession

Well I have been blogging off and on about my weight loss (or the lack of it). I was on a mission to lose 10lbs by my 30^th birthday (in one month) which was on October 6. Well that DID NOT happen. There was way too much going on in life to concentrate and dedicate myself to weight loss. So I probably lost 2lbs by then. Which is better than nothing.

Not until the week of October 24 was I able to really focus on myself. I tried for a few days off and on before then, and got a few work outs in, but nothing major happened, of course nothing was going to happen if I didnt do this 100%.

But as of today, I am 6lbs lighter than I was back on October 24!! And that is something to be extremely proud of!

I will confess, I had reached my most ultimate heaviest weight at the beginning of this year. The holidays hit me hard last year and I will take full responsibility for my (unnecessary) pigging out and drinking too many holiday drinks!

I probably weigh in at what I was weighing the day I went in to give birth to Ethan. Yes. Embarrassing for sure.

The year we decided to conceive Ethan I was at my healthiest and leanest weight ever, at 134lbs, in a size 4 –feeling incredibly good about myself. But I was overly consumed by working out. I was working out for about an hour – 1.5 after work, I didn’t get home until almost 6 and the kids went to bed at 8pm, so there was hardly any family time left with my children. I was circuit training with weights and doing HIIT workouts… I was a monster. My children and husband came in after my obsession.

Then my pregnancy with Ethan was rather emotional. With the high risk of miscarriage and then the markers for Down syndrome, I didn’t want to be worrying over irrelevant things such as my weight and whether I was eating according to my diet and if I worked out or not.

After Ethan was born I was weighing in between 155-160 and I could wear a size 10, sometimes an 8. Breast feeding made it difficult to diet and workout properly, as soon as I ate less my milk production would drop and I decided to not stress over it much until I finished nursing Ethan. I say “nursing”, the truth is the kid never latched on only to soothe himself, I pumped like a cow for 10 months.  

By Ethan’s 1^st birthday I did weigh in at 150lbs, but that was short lived with all the birthdays that followed and then the holidays. By the beginning of the new year, I was at an outrages weight. I couldn’t even zip up my size 10’s.

So off and on since March of this year, I have been dieting and working out… I managed to stay at around 166 and I kind of become stuck at that weight, sometimes a pound or two less or more. I have lost between 10-15lbs lbs since the beginning of the year. It is really hard to say since at one point I refused to even go on the scale at all and no telling at what my actual weight was.

But this morning, I can officially say that I am back in the 150’s! 159 this morning! We are making progress.

I do not know how I ever lost control over my weight. And this is all really embarrassing to confess to the world, and especially my husband who reads my blog, I am just glad that he loves me for me and the support that he gives me, whether I take a break from working out or I am hardcore dieting and working out.

By the end of the year I hope to be in the 140’s, even if it is 149. By the end of this month I hope to be at 155. I KNOW I can do it. I’ve done it before. I have been getting 30min workouts in on most days and that is pretty manageable without it overly consuming my life. And if I want to increase that time I will have to wake up early so I do not take time away from my family. It’s all about finding the perfect balance and having the determination and will power to do it.

Sometimes we don’t think we have the will power…but it is there, deep down inside and we have to reach in deep and go for it.

I know this is a topic that a lot of us women face, and it can lead us to feel so desperate and depressed but it’s certainly something we can take control over. If you are going through this, YOU CAN DO IT! Don’t get lost in the feeling of desperation, it will overwhelm you.

Last night I couldn’t sleep at all –why? Because my underwear were loose and were rather uncomfortable! Yes, I just made another embarrassing confession but I rather my underwear be loose than tight! And I want you all to join me in the My Underwear Are No Longer Tight Club.hehe!

-erika

I am a slacker - no doubt

Oh – My – Goodness – Did I just drop off the face of the Blogger World…???

Nah,  I’ve just been slacking. I am a slacker.

So the hubby was sick, Ethan was sick, I have been sick… and finally the world is coming together! Yay!

Obviously I FAILED with the whole 31 for 21. But the important thing to remember is that we, us parents of a child with Down syndrome, do not have to blog everyday to raise awareness. Everyday that we wake up we are raising awareness by our actions. I encourage you all to live positively and happily.  And that my friends, is something I live by (even on the days that I am down and whining, I manage to get over my fits and turn my days around.)

Halloween was awesome! I took that Friday off of work to spend the majority of my day at Ethan’s school. They had a parade in the morning, followed by a party in the afternoon. 

Ethan was an Oompa Loompa… and definitely the talk of the day!

 Oompa Loompa wedgies are awesome!

Crying at the party... he wasn't too happy about eating cookies or caramel apples -he's a weird kid I tell you!

The rest of the weekend was just one whole amazing time. Gathering of Friends (DSAH – Down Syndrome of Houston annual festival) on Sunday. 

 We like ponies....

 No, never mind, we don’t like ponies afterall…

 Comparison from last year:

Originally Ethan was going to be a cowboy, but that just seemed so generic and usual... but he did get to wear his Cowboy costume for Sunday when we went TrunkorTreating.

-with his super cute Kitty cousins.

 Cutest cowboy ever!

For Halloween we always go to a festival instead of actual trick or treating, just seems safe compared to actually  being out in the streets. 

 We entered Ethan in the Halloween costume contest, but it was RIGGED and he didnt even win at all! Some stinky Flamingo, Sock Monkey, 50's girls won... (yes, I am a sore loser! so what!)

 -seriously....a  stinky flamingo beat this uber cute Oompa Loompa! 

 My Bumble Bee and Indian girl... precious girls of mine!

and our annual Halloween pic we take each year for the past 5 yrs... (except last year)

So that sums up what Halloween was like. FUN.

I took the girls to see Taylor Swift in concert (thanks to DSAH for providing the tickets) this past Saturday…. Had a blast! Will share those pics tomorrow!

Until then – Have a great day people!

-erika