It's all good in the hood

Am I the worst blogger in blogger land or what?

So what's new in the Berrios-Harman household? Not much! We are both busy with a crazy summer semester, Jaidin is busy with going to school (daycare), and being insanely cute!

Jaidin had an appointment at Hope Haven , they are well known for doing evaluations on children with down syndrome. The waiting list for an appointment is a year long, we got lucky because they had a cancelation. They start off with an educational discussion with the parents, then moves on to evaluations in speech, physical, and occupational development. Jaidin did amazing, or in their terms "rockstar" in speech and occupational. Physical is a whole different ball park. He REFUSES to crawl and to get to sitting from laying down. He is capable of doing it but he just won't! It is becoming so frustrating because he is content just laying or sitting on the ground. The therapist that evaluated was amazing!! She said that he doesn't like any type of movement. He refuses to initiate it. Her and his regular PT say the same thing; he can physical do these things but he won't do it. It still makes me sad because I see his peers doing these things and he is so far behind them. I just wish he would stop being so stubborn and DO IT! It's so weird though because he LOVES to walk. He will walk all over the place (with support)! 

He is 14 months, when will he crawl?!?!? 

He is doing awesome in speech, he is starting to repeat words and talking a lot more. Not just baby babbling but we can tell that he is actually trying to talk now. He says "banana" now. He is incredibly smart; we have a few little animal toys that we hold up for him to see, tell him the name, and make the noise that the animal makes, and then ask him "where is the ....?", he always grabs the correct animal, no matter how many times we mix them up. He has aced the toy that the kids pull of and put on the star shapes that go from big to small (I know it's confusing, I'll post a video). If I hold up his pants and his shirt, he will grab the correct item. He is my smart little dude..... who refuses to move! :)

The video is a few weeks old, now he picks them up off the ground to put them on the toy.

Here he is saying "banana"
Overall, everything is good. I can look past the non-mobile aspect. I would rather him have brains than anything else. I know that he WILL get there one day. I have to keep telling myself that... He will get there...He will get there...

Deep Thoughts

Doesn't he look so deep in thought?

A couple videos

Enjoy these cute little videos of Jaidin practicing taking steps. 

Real words.

Phew, I think I have made it out of my funk. Thank you all who took the time to respond, you all made me feel a lot better.  I know that there are families who have it a lot worse than we do but I still have my down days. We are extremely lucky that Jaidin is doing so well; medically, mentally, and physically.  I can't sit here, though, and tell everyone lies, sugar coat everything about this life of down syndrome.

 Everything I write is real; happy and sad. I have not and will not ever sugar coat my words to make down syndrome look like something that it is not. Down syndrome has it's good aspects as well as it's bad aspects. Yes, I do cry sometimes (usually after I have had about 3 too many alcoholic beverages), yes, I wish my son didn't have that extra measly little chromosome (so sue me). Yes, I feel sad for him at times when I think about the fact that none of this is his fault (that was more frequent when he first arrived).  None of that means that I don't love my son more than anything in this world. None of that means that I would go back and change the decision we made to grant him his right to life. He DESERVES his life just as much as you do. He is an amazing little boy who makes everyone smile when they see him (I'm not kidding about that).  I am entitled to have my sad days, I know 100% that these days will happen throughout his life.

Maybe I could be that person who doesn't ever shed a tear over down syndrome, does that person actually exist? Maybe that person exists in public but I am pretty sure that behind closed doors, tears are shed.  It is completely normal, it is a normal emotion to feel hurt for things that don't seem fair to your child and to you. Hearing the news that you will be raising a child with down syndrome is a HUGE shock to your mind, body, and spirit. You couldn't have paid me $10,000,000 to believe that I would ever be raising a child with down syndrome! EVER!! I would see someone with down syndrome and think to myself "I feel bad for their parents".. Well damn, I am THAT parent. I don't feel sorry for myself. I was so ignorant in that sense. 

Down syndrome has brought me into this whole new, unknown world. I have met a lot of new friends, online and in real life. This is one incredibly special bond that we all share.  I have learned so much from these people, I have learned so much about down syndrome, more than I ever thought possible. I am thankful for all the people that have been introduced into my life. Jen always says "everything happens for a reason", I believes this too. What is the reason that down syndrome was brought into my life? I want to figure that out. Is it to meet all these people? Is it to fight for what I believe in? I already fight for gay rights. I just can't figure out the reason WHY this happened? I am positive that I will figure this out. It doesn't matter if it takes me 2 years or 20 years, but I WILL know one day. 

I am so lucky to be one of Jaidin's parents. I am so lucky that he loves me so much. I am so lucky that he is a "mom's boy" (Jen is mami, the Spanish version on mom). I am so lucky that he wraps those sweet little arms around my neck and hugs me. I am so lucky that he gives me those wet baby kisses. I am so lucky that he looks at me the way he does with those big blue eyes. I am just lucky.


I mean who else gets to go to Disney World whenever we want? LUCKY!

I wouldn't trade my life or my son for anything or anyone.

A not so happy post

Sometimes I worry that I am not doing enough for Jaidin. I feel like we have let him down by not pushing more out of him. His biggest hurdle is his weak stomach, it is preventing him from crawling. At almost 13 months old he still won't do it. I am tempted to delete my facebook and websites that have anything to do with down syndrome because it is depressing me to see kids his age with DS doing things that he isn't. He is no where near crawling. He just won't do it. He is content just laying on the floor and not moving. It is so frustrating. It breaks my heart to see all the videos and pictures of his peers surpassing him. He is so stubborn, SO EXTREMELY stubborn, it is becoming an issue in his physical development. He sticks to what he knows how to do and refuses to try new things. He does things his way.. It's his way or the highway. The thing is, is that his way, is him not trying to do anything new! It make me cry thinking about how far behind he is when it comes to crawling. Typical 5 month olds are making more progress than my almost 13 month old. 

Jaidin is only severely delayed in the physical aspect. He is amazing at speech; his ST always tells us that out of all the kids with DS that she has worked with in his 15 years, Jaidin has the best mouth control. It is an excellent sign for his speech and articulation. I hope that is true but honestly, I have my doubts about that too (maybe because I am in such a funk about DS right now).  He eats only table food, feeds himself, drinks from his straw cup only all day (except for the 1 bottle we give him right before bed). He knows 5 signs (I feel like he doesn't know enough signs. We have only taught him 5 but he picks up on things super quick). He follows commands "Take them out", "put them in", "Give me". If we say "where is Jaidin?" he points to himself. He waves "hi and bye" without being instructed to, he knows when the appropriate time to wave is. He says, "all done". I know I have mentioned this stuff before but you have to hear it again! 

I shouldn't say he is severely delayed in the physical aspect, I should say in the crawling aspect. He takes steps holding onto things, shifting his own weight now. Instead of standing behind him, holding his hands, and shifting his weight for him, we can sit in front of him, hold his hands, without shifting weight, he can take steps to get to us. He can stand unassisted until he realizes what is happening and drops down. He is doing well with that. His therapists are thinking he is going straight to walking, they said that is fine cause he will crawl after walking but after listening to other DS moms, they said that skipping crawling is bad for his brain development, so that stresses me out even more. His therapists say that as long as he is getting that input in other ways, then it is fine. I choose to believe them who have been doing this for 20 years each (except for his OT but she is awesome and is a 26 year old who has her DrOT).

I know this post isn't a happy one but I am not always happy. Down syndrome does force me to have sad days, I cry over it at times. I usually deal with his diagnosis so well but I do have my moments. It doesn't mean that I wish I would have made a different decision about bringing him into the world, I KNOW we made the right decision for us AND him. It doesn't mean that I am not happy with my life, I am very happy with my life and my little boy. 

sorry to be so depressing today but I have been seeing a lot of videos and pix lately that have been breaking my heart. Or it could be PMS.

Progress?

Lately, I have been down about the progress Jaidin is making on his crawling, which is NONE. He can get on all 4's but he won't do it. He literally hates it. It is a full on battle at therapy all the time when she tries to put him in that position. He has no issues doing it when he wants to though. He still won't crawl! I don't understand, it's like he is content just laying or sitting on the floor. He definitely does not like to try new things. He is so extremely stubborn. He can stand (unassisted for about 5 seconds) and all that other good stuff but he just won't crawl. We have the crawling track, he scoots down it but thats about it. I feel like we haven't done enough for him or else he would be crawling now. Maybe we should have put him on the track more. We hardly did. Ugh, I wish I could go back in time.

We have him in full time day care 4 days a week. He is in the toddler room (ages 12-24 months), we are hoping by watching them, he will attempt to do more things. This is only his 3rd week, so we will see how it goes. He already started feeding himself since being there. I don't know if you remember but that was an issue before. He just wouldn't do it, he knew how but refused. Now he will feed himself his whole meal. We are trying to stay positive about the whole crawling situation. People have me worried though (I worry about everything) cause they said crawling is extremely important for brain development. What if he doesn't crawl?!?!?! Ahhhhh.

Anyway, he is so smart! He knows 4 signs now; eat, all done, more, and milk. He also waves hi and bye at appropriate times, and if we ask him "where's Jaidin?" he will start patting himself on the belly. Same goes if we show him a video of himself.  His ST is convinced that he say's "all done". We noticed that he was making this sound.. A DUH, it never clicked to us that it could be "all done" but her being the ST that she is, caught on. We are not sure if he uses it appropriately but we are excited that he is actually saying something. 

We have been doing the same exact routine with him since he came home from the hospital, maybe we have missed a total of 3 days; bath, diaper, lotion, PJs, milk. So now as soon as we put on the PJs he is looking at us doing the sign for milk, over and over again until we give it to him. He is my smart little guy.

Change of subject.


I totally forgot to update the blog about his birthday party. It was fun, except for the fact that he was Mr. Grumpy pants. Elmo came to help celebrate, he seemed to enjoy that. He cried during the singing of Happy Birthday and while trying to get him to eat his cake... Sighhhh, what can ya do? Everyone else had a good time, and he got some pretty sweet clothes. 


I'm gonna leave you guys with some birthday pix. Sorry for taking so long to post them!

Celebration

Down Syndrome is not the end of the world. 

Today we celebrate that one measly little chromosome that has become a part of our lives.  Some might question why we would want to celebrate a day dedicated to down syndrome but the answer is simple: Why wouldn't we? We celebrate gay pride, we celebrate black history month, we celebrate things that are a part of our life.

Today is World Down Syndrome Day.

Down syndrome is a part of our lives but it is NOT our life nor our son's life. Sure, we take him to therapy a couple times a week, who cares? I don't care! I actually enjoy watching my little guy accomplish things that most parents take for granted. I love the fact that down syndrome has given me the cutest little boy in the world, with a hilarious sense of humor and a hint of an attitude. 

Down syndrome does not own us.

We celebrate today for being different. We celebrate the love that we have for these special people. We celebrate the fact that down syndrome has made us all better people. We celebrate that we can all pretty much write a book on genetics since being introduced to down syndrome. Just kidding.  


Today I celebrate life.


Today I celebrate that my son is here in my life. I celebrate that we made the right choice of bringing him into this world. I celebrate that my son was given to us so that he was able to make it into the world. I celebrate his life. I celebrate for every person with that extra chromosome who was lucky enough to make it into the world.


My heart hurts.


Amongst all the celebration, my heart hurts a little as well. My heart hurts for all the babies with that one extra chromosome who were not given the chance to be in this world. My heart hurts for the parents that didn't give those babies a chance to be celebrated. 


I encourage everyone to always fight for our kids. Always fight for more research to enhance their lives. Always fight for inclusion. Always fight for the respect that our children deserve. Always be an advocate for our children.  


I encourage you all to celebrate these beautiful human beings.

Check out more stories of this great day here at My Stubborn Miss.