Wednesday, April 14, 2010

Rants and raves. Well, mostly rants.

I'm tired. The pollen is kicking my butt. I'm behind on everything. I've had so many things to do. I've had so many things to say. But I feel like I have no time to do anything that does not involve my children. Join the club, right?

Therapy. The all encompassing therapy. Tball. My business. Soccer. Photography. Blastball. Young athletes. My own volunteer work. All that and more on top of trying to retain order within my home and just be a family.

I sound like a broken record.

All this stuff ain't happening. Well, it is happening but it needs to get easier. So I rehired my house cleaners. And oh how happy that makes my soul. They came yesterday and some of that must.retain.order.within.my.home stress has been lifted.

I feel like I have sort of been slapped in the face lately with a few things that have put me in a funk. I try really hard not to let things get to me, but seriously ... one human soul can only handle so much.

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Payton has childhood apraxia of speech. In other words, we are trying to get our 4 year old to be able to say things like me instead of pee. Or bye bye instead of dye dye. It is an ongoing struggle. Watching her speech be broken down to such a level has been really eye opening for me. To see the stages of development from this perspective is something I wish everyone could see. It is breaking my heart that speech is so incredibly, frustratingly hard for her.

She is tired. I'm tired.

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And then ... to increasingly observe other kids staring at her and asking why she can't talk. Although she has no idea any of this is going on, I do. I have always been fine with explaining her speech delay to other kids, but the older she gets ... the more I worry about them judging her.

Like four older neighborhood boys did this past weekend.

She said, "Hi."

They said, "You're stupid."

I presume they called her stupid because she looks like she is big enough to be able to talk, but they have picked up on the fact that she sounds like a young toddler. So now she is being called stupid because she can't talk. Fan-freaking-tastic. Not only that, but Mason was standing right there to hear it all ... coming from his peers. Fan-freaking-tastic.

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Nika is in the third percentile of children her age for fine motor capability. Or so the evaluation says. I ... I don't even know where to start with that one. I feel like she is doing better than that, but I also think that I classify her as younger than she is ... I guess given the fact that she spent two years in an orphanage where she was cared for, but not really taught skills that a child with Down syndrome would need to be taught. I guess that is why? I am also concerned that she has childhood apraxia of speech and we have a detailed evaluation in a few weeks.

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Mason is still struggling a bit with reading and it frustrates me to no end. I feel like no matter how much we work with him on certain things, he has such a hard time wrapping his little mind around it. Yet when it comes to math or science ... he is golden. Clearly he is my kid. So we roll on ... hoping he somehow is not being left behind in light of all that his sisters require.

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Meanwhile the fact that he is growing up so fast has become so evident. The things he says crack.me.up. He has a new found obsession with Justin Bieber. He asked me to upload the song Baby to my iPhone, so now that is what we listen to as we stroll the aisles of the grocery store or as we drive down the road or as we eat dinner or as we try to sleep. Ha.

Then, Mason came to find out that Justin Bieber is on the cover of Teen Bop and other such magazines. "Mom, can you buy this for me?" 

Really? Really. I am having to buy teeny bopper magazines for my six year old? Wow, that makes me feel really old. As did spending our last shopping trip in abercrombie shopping for clothes for him. It really was a weird moment for me to have graduated from Baby Gap ... I mean abercrombie, this is big time, big boy shopping. So crazy.

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I sort of have been really bothered lately by things I have read on an adoption listserve that I subscribe to. This attitude of I-will-adopt-only-the-perfect-child-or-none-at-all ... it seriously drives me insane and it is really hard for me to bite my lip. I try to remind myself different-strokes-for-different-folks ... but honestly, I'm not really sure how one can go into an international adoption and expect that their child will not have developmental delays, cognitive problems or even health problems.

This is par for the course people. No, a child will not always have those issues, but they could. And no, it doesn't necessarily taint the child for life. Or, what if it does? Does that make that child any less deserving of a family that loves him or her?

Urgh.

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Sometimes I just want to hold Nika high in the air and yell, "Look at her! She is beautiful! She is healthy! She deserves to live her life! Down syndrome, developmental delays, cognitive problems and all!"

And then I go on to read about this Tennessee family that adopted an eight year old child from Russia six months ago. Because they could not deal with ... nor find the right means to go about a disruption ... whatever issues he brought with him, they thought it would be a fantastic idea to put him on a one-way flight back to Russia. After arriving in Moscow alone, he gave officials a note from his adoptive mother that explained that she was returning him due to severe psychological problems.

I mean seriously. Seriously?

And now Russia is threatening to stop Americans from adopting from Russia at all. I'm praying and hoping this will not happen, but it is a very real possibility. I pray that one bad egg doesn't ruin the bunch.

Please click here to see how you can help.

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And as if that wasn't enough, I read about a doctor in Florida who is alleged to have "aborted the wrong fetus". Shocker that the fetus that was to be aborted had Down syndrome. After the parents found out that the wrong fetus had been aborted or "killed", they proceeded to abort the fetus with Down syndrome.

So let me get this right. The fetus that did not have Down syndrome was "killed", but the fetus with Down syndrome was "aborted"? Is the method of death not the same? Is a fetus with Down syndrome not worthy of life, so it is not classified as being killed? Is this what we have come to as a society?

And ... the fetus with Down syndrome was described as "deformed". Okay, having an extra chromosome does not make you "deformed"!

*stepping off soap box*

And had I finished this post last night like I intended to do ... I would have said ...

Goodnight.

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22 comments:

  1. Great post. LOVE the pic of Kyle and Nika!

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  2. Great post - I'm in tears - life feels unjust and people focus on the wrong things - if I could hit something and vent I somehow feel like I'd feel better - but you put it into words - the stuff that is REAL and important - thank you for being a voice for what is right....

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  3. Bethany,

    You've had a rough week! Sometimes the weight of this world is just too much to bear. Hope your week finishes on an upbeat. Praying for something good to happen :)

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  4. I hope the Russian adoptions are not stopped- I wish the Russians would look at all of the families like yours and let that shine brighter than the Tennessee family. Sucks when one persons awful actions speak so much louder than all of the good. Ugh. And for the neighborhood kids- I'll bet I know what ones they are, and they made fun of William when he was little so we built a fence to keep them out. Lovely!

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  5. Wow, what a week! These are some powerful issues.......definitely emotionally draining:( I hope tomorrow brings tons of sunrays:)

    Sorry that Mason is struggling so much with his reading:( Maybe, just maybe, this fondness for Justin Bieber (who by the way, my Mason, 7 yrs old, is quite fond of too), and this Teen Bop magazine, just might be the answer to your prayers. I think children will apply themselves when doing something they really enjoy. Who wants to read "school textbooks", after all, the word "school" is attached to it. Maybe this magazine will be the spark??!!

    Good luck:)

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  6. oh girl...
    tears pouring down my face.

    i hate that kids are calling her stupid. awful.

    i hope the latter part of the week gets better :o)

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  7. wow I have so much to comment on where do I start? I guess I will just start and you can figure out what the comments are to lol

    I asked W's speech therapist about apraxia and wanted to know if she thought he had it. she replied with "probably" and gave me handouts the next week UGH!thanks for the help with that one
    grrrr

    Mean kids just suck!!!Let me get my little hands on them :)so frustrating

    Reading will come to Mason, give it time, once it "clicks" he won't want to stop

    2 stories lately which have literally made me sick to my stomach....stupid adoptive lady "returning" child and Fla Dr.... WHat the hell is wrong with people today?seriously???? Children are not "perfect" my "typical" children surly are not either how do you respond to such ignorance and stupidity?

    I really pray this does not ruin international adoption in the future

    hummmm I think Im finished :)

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  8. Right now..i seriously could just SCREAM!!! People are absolutly wrong!! I am soo sorry that your girl got called stupid.Kids are just so mean and i hate that!! Im sure we are going to be coming to that road soon too and i really dont know how i will handle that i know not very good...and them articles well that just makes me SICK!!!! I just have tears coming down my cheek..I pray for a better week for you and your family..hmmm i wonder if Avery has apraxia..never knew anything about it..ill have to research it more but it sounds like it might fit her..thanks;)

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  9. Well put. Lets go out for a beer :)

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  10. I hear you Bethany. Tough stuff to deal with. Hope better days are ahead, and more wisdom for the world and every circumstance you just wrote about.

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  11. AWESOME post! Hats off to you for writing with such honesty - I share many of your thoughts and have just not had the energy to go there. Not yet..

    Not that any of the issues you brought up do not deserve a mention but the one I am stuck on is your 6yr old looking like a teenage cutie with his sunglasses on. WOW!
    And wanting to read TeenBop?! :)

    *sigh*

    All kidding aside, I have found myself so overwhelmed with the stories you mentioned as well as Sam having Apraxia that I have had to step away from the media and much that has to do with news and online even. People, conversations.
    I can not seem to find an even footing AND take on the emotional hurt, not right now..


    Hang in there.

    One more thing, when your cleaners are done with your house, do you think they would mind coming over to mine?.. maybe just do some laundry..?

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  12. you have so much going on your life, and i guess we all feel the same way, i only have one kid and i feel it, but i have learned to stop and enjoy. when i start worring too much to be tired about therapy and stress out about not really being able to help much as i would, i stop, and enjoy. i stop therapies, and start just playing and enjoying my kid. it really works. and i really think it works for them too.

    i would love to know more about apraxia. i think is something i have not heard here in Mexico, or at least here in Monterrey. and i dont know if Elias has it. Elias speaks too much, but people wont understand him much. and yes it frustrates him. he is developing some behaviours that im sure is because of his unability to express.

    But im thankful that kids dont stare much, and they dont ask much, yes they get surprised about him having 5 and not being able to talk, but still they like to play with him, few time , but at least is something. when it was his birthday, i brought a cake to his classroom and asked the kids how many years elias was , and some of them answered 2. i thought it was cute, but yes it hitted hard. they look at him as the baby, but then the teacher told me that if he is 2 he must be smart to be in a class with 4-5 yrs old kids. lol.

    anyway, dont know if you have read about communication partners, its a really good way of having communication therapy without stressing much about speech. really. check it out. is wonderful

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  13. I've never commented before, but I have read your blog for quite some time now. I too have three children (all girls) and two with Down syndrome - both biologically mine. I too have been getting very discouraged with speech/apraxia and just lack of progress! My youngest daughter is turning four this summer and we are working on the most basic of sounds and putting sounds together and it has just been really tough lately. I rarely get down about the challenges that we encounter, but I really need some progress here! So, I'm writing just to thank you for reminding me that I'm not alone and that we'll make it! Take care and keep up the good work with your kids and keep on posting - I'm reading!

    Sarah Baird
    thebairds@charter.net

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  14. I love that you son like Justin Bieber, so does my younger sister. Those sunglasses he has on is something I swore I saw on some tv show that Bieber wore too haha.

    As for everything else, hold your head up high. Things will get better, just have faith.

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  15. It's been a heavy week. The adoption story. The abortion story. Almost every blog I read has something about feeling sad and having a difficult time with Down syndrome. And my feelings and public complaint on fb about toilet training woes didn't help me either. One thing that blogs help me is to see that we are ALL dealing with something whether it be delayed speech, eating difficulties, toileting problems, behavioral problems, school issues. We all have something. It helps to know we are NOT alone in this journey.

    P.S Love, love, love the picture of Payton asleep on the couch with her backpack on. And I think you should hold up Nika up high on shoulder everywhere you go. She'd do wonders for international adoptions. I don't think they get any cuter!

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  16. I heard about that little boy from Russia being returned and I thought about you and your sweet little girl. I hope they don't close down for adoptions, that would be so sad. I am sorry you are having to deal with so much and are down. I hope that the next days bring sunshine and renewed strength. Your a wonderful Mom, you have wonderful kids and those who have see the light that our kids radiate will be the ones that buoy you up.

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  17. It breaks my heart when I read that other kids are calling Payton stupid....sometimes you just wish to live in a bubble to protect your kids from the evil on this world. A fear that I always have is that other kids are going to be mean with Allyson…...how can that be if she is so sweet,; however, other people do not see the beauty that you see in your children. It is easier said than done but we have to learn to live with that and educate people around us. My heart goes to you
    Luciana

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  18. The mean boys are horrible - please be very rude to them next time you see them! I did want to say our daughter was in the lowest reading group in 1st grade, got a little better in 2nd grade, and now in the 5th grade is a faster reader than I am, and has excellent comprehension skills. She read the 1st Twilight book in 2 days. So do not worry about your son AT ALL. Believe me, I wish I could bring her back to her old teachers and show them what a strong reader she is right now. That's only one thing on your stress list, but I can take that one off for you! Hoping for a little more peace -

    Victoria

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  19. Hey Bethany, buying Teen Bop make you think of the days you made your mom buy it for you with NKOTB on it? - LOL That's all I could think of when I read that, and I bet you slept with it under your pillow like I did! I almost emailed you when I heard about what this ignorant woman did, really how could she? Does she have no conscious or soul? Hugs, summer lovin' will be here soon.

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  20. I still can't get over the mean boys...especially when she was saying hi to them! I think it helps to vent these feelings, I know it helps me to read them and realize I am not the only one with struggles.

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  21. Bethany,
    This is a great post and puts into words feelings that so many people are feeling!!! I am sorry that all of this seems to come in waves and the weight of SO MANY THINGS that you and Kyle have to deal with are coming down on you. I have tears in my eyes reading this post! For your feelings for Payton as the older boys called her stupid (oh, that makes me so mad and hurt for her and for you guys), for mason and his struggles with reading + being the awesome big brother that he is to payton and nika but sometimes having to hear friends from the neighborhood being mean, that is really hard! for nika with some of the struggles she still is facing with speech and fine motor skills, the russian adoption issue, and i had no idea about the family in florida who had their "wrong" baby "killed" and then "aborted" their other "baby"! that is AWFUL AWFUL AWFUL!!! I actually wished yesterday I had your phone number! I had not read this post, but I had an experience at Marshall's (TJMAXX) that came out of the blue and hit me really hard because it was unexpected and it had to do with Whitney. I have been fortunate not to really experience much as far as negativity regarding her Ds and yesterday I had my first experience with it and it caught me off guard. I felt like I needed to talk to someone who knows what I am going through and I think you do such a wonderful job with your kids and all you have going on that you popped into my head as the perfect person who could understand what I was feeling (there are many others whose blogs we read who would also be great to talk to). anyway - keep your head up, you and kyle are doing such an AWESOME AWESOME job with all of your kids! I just wish I had a way to tell you that you could protect all three of your kids from mean kids, but unfortunately I don't think any of us have that figured out yet (if you do figure it out, please let me know... i would love to protect anne ane whitney for the rest of their lives!)

    hope you guys have a good day today!

    Laura

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  22. i'm sorry for all the speaking struggles and anyone being called stupid. i dislike that word very much. i can't believe the story about the child adopted from russia. WTH? We all need to rant sometimes. may you be overwhelmed with joy to the point that it's annoying tomorrow!

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