Thursday, January 28, 2016
Invisible Needs
This picture has almost nothing to do with this post. It is just one of my favorite pictures of #1.
I don't actually think people read this blog anymore. That is fine. I just need a space to express some feelings.
#1 has Sensory Processing Disorder. She was diagnosed in the state of Oklahoma, and she was considered special needs.
We have moved to another state and here she isn't considered special needs.
But she is still the same kid. She still has the same struggles. And I work with her on things every day. It is a constant effort to try to get her to function well with her surroundings.
I have a few friends with visibly special needs kids. I have heard them talk about how hard it is when their kids don't make friends or when they are left out. Occasionally they will have people who make a special effort to reach out, but most often they are just left out. Hearing this has always made me sad and we try hard to include other children.
I have a child with invisible special needs. The most common things I am told when I tell adults about my kid are, "She is just fine." "She acts like other kids her age" "It is just a behavior problem and she just needs a little discipline."
She does struggle with behavior. She is often like the other kids her age. She is often just fine. But if you really watch, she is a little bit different. Adults don't really notice unless she is having a meltdown. But kids notice. And they don't like it.
For a while now I have noticed that she has struggles in social situations. When struggles start then she tends to whine a lot. Then other kids start to avoid her. But she didn't notice this was happening. We have been working really hard on not whining. She doesn't always remember though.
Last week she was sad because some of her friends didn't want to play with her. We had a long talk about whining and I told her that they didn't want to play with her because she whined. We have been working SO hard at staying calm and being happy with friends. She is finally starting to improve.
Along with all of this, she is pretty head strong. She doesn't like to be bossed around. There are 2 little girls that we play with sometimes and #1 thinks they are SO great! These girls are both in situations where they don't have to share. One is the youngest child, so her siblings are at school all day, thus she has free reign over her toys. The other is the only girl in her family, so she is used to not having to share any of the girly toys. She also mothers her little brother and bosses him around. He plays along. I have watched these girls look at #1 and run away from her. If they don't do that then they are bossing her around and then are unkind when she doesn't do what they want.
Today we were in a social situation and #1 kept playing with the lights. Every time she would turn off the lights these other girls would run over to turn them back on. I told #1 she needed to stop or we would have to go home. She didn't stop so we left. She cried the entire way home. Once we got home and she calmed down a bit we had a talk. She asked me why the other girls didn't want to play with her. She told me that she turned off the lights because then the other girls would come over and turn them back on. She thought they were finally playing.
Today, I held my special needs child and cried with her as we both felt sad. #1 is "typical" enough that she knows when people aren't being nice to her. She is special needs enough to not know how to handle situations. (And she is only 4) She looks normal enough that parents don't encourage the extra kindness often given to children with visible needs.
Her perfect world was shattered today. She now knows that she is different. And her heart is broken.
As a mom, my heart is broken too.
Tuesday, June 11, 2013
Say What?
#1 is not much of a talker. She wants to talk, but she is super behind on the skill. We practice, and she is improving. She says hi, bye, mom, dad dad (she always says it twice), no, and a new word:
Num-nes
Any guesses what she is saying? After a few guesses from you, I'll tell you in the comments.
Friday, May 10, 2013
Day To Day
Example: Going to the grocery store. This has never been one of my favorite tasks. Now I pretty much hate it. Figuring out how to maneuver a grocery store with two girls was a struggle. But I think I have it down. Oh, but I just told you I hate it. Why would I hate it? Because of all of the lame people!
I realize where I live that a family like mine is unusual. I'm used to the surprised looks. I'm fine with people asking the ages of my girls. We can be a bit of a spectacle. It is normal for me to hear someone comment on how cute #1 is, to then have them look with surprise when they realize there is a baby in a carrier right behind her. But really, friends. Can we work on a few things?
For example: Today I went to Aldi. It is a great grocery store with awesome prices. There are a few quirks for those of you not in the know. They don't bag your groceries. They take the food right off the belt, scan it, and put it back in the cart. Also, you have to "pay" a quarter to get a cart. You get your quarter back when you return the cart. We made it through the store with #2 in the car seat at the front of the cart, and #1 in the main part of the cart. She loved that I kept handing her new toys to play with. "Oh look! A box! And a can! And another box!!! My life is awesome!" (I'm pretty sure that is what she was thinking.) We even managed to buy eggs and get them home in one piece. (Well, 12 pieces.) While shopping I had quite a few of the normal comments I get. That's cool. #1 was squealing a lot. But she was super happy so I didn't stop her. It's not like we were at the library or anything. I heard (and I guess that there were more comments I didn't hear) one woman say under her breath "she could probably keep her kid under control if she didn't have two to deal with." EXCUSE ME? Who are you to say something like that? My girls were both being very well behaved. If you are allowed to make any noise, then so is my 18 month old.
When I went to return my cart I had both girls with me. It is getting hot here, #2 was asleep, and I knew if I put the girls in the car and when to return the cart #1 would scream and wake up her sister. The problem was, you can't get your quarter back if anything is in the cart. I pushed the cart to the return area and passed a couple that was smoking. "Oh, look how sweet" the lady said. "She is adora... wait! Is there another baby there?"asked the man. I smiled and told him that yes, there were two and they are both mine. He then proceeded to watch me struggle to return the cart while holding a squirmy toddler and a baby in a car seat. While I was doing this he commented that I, "must have a really hard time doing normal things like grocery shop with those kids." Huh. Ya think? Maybe you could put down your cigarette for a minute and return my cart for me? I realize that you may have had to step about three feet to do this, but that would have been much kinder than just watching me struggle and commenting about it.
Oh, and probably my favorite comment I get from people: "Did you know you don't have to have your kids so close together? There area ways to prevent that...." oh... gosh... I'm so embarrassed I didn't know that. I sure wish I had known you before so you could have imparted your great and wonderful wisdom earlier.
Maybe we should just be nice? Maybe you don't have to approve of the spacing of my children but you could just keep your opinion to yourself?
And just one more story. This last week Hod and I were out shopping for Mother's Day. He wanted to get me some jewelry with an emerald. Right after finding out the ages of the girls (18 and 3 months) the sales lady perked up and asked, "Oh, so do you want an emerald because that is their birthstone?" Ha! Nice math lady. But if this month is May and emeralds are the birthstone for this month.... how can an 18 and 3 month old have May birthdays? People are funny. At least she was nice. :)
Monday, April 15, 2013
Just A Moment
Wednesday, February 20, 2013
Adjusting
I love my girls so much. #1 has a few little quirks. For example, when she is really sad she will find her favorite pink blanket and bite it. I don't know where that came from. This morning I had #2 on the floor as I was changing her diaper and she was screaming. #1 came over, and though at first I wondered if she was trying to smother her sister, gently offered her favorite pink blanket for her sister to bite on. Yesterday #1 tried to sit on #2. We had a very quick, very firm talk about why that wasn't ok. She went to the other side of the room and sulked for a minute, then came back and gave #2 the sweetest little kiss and pat on the head.
Today we have all been awake for less than three hours. So far I have given 3 baths, changed 5 diapers, and changed 4 sets of clothing.
Last night I got 2 1/2 hours of sleep.
This morning I had a beautiful 10 minute cuddle session with #1. She smiled at me and gently rubbed my cheek.
Monday #1 threw up on me.
After a lot of work, I have gotten #2's schedule to shift about 5 hours. She came home from the hospital almost completely nocturnal. She is starting to respond a little to me. Blinking her big eyes and pursing her little lips into the sweetest "O".
I taught #1 how to tickle #2. Not that she laughs yet, but #1 thinks it is the coolest thing ever.
#2 is already obsessed with her pacifiers. #1 was never really into them. This is awesome because it is really quite easy to calm her down. It is a little less awesome because if the pacifier falls out at just the wrong moment she kind of loses it.
#1 is doing marginally better with eating. She will now eat chicken and beef. Now we just need to get her to sleep. She was doing great, but then we brought home her sister and threw her entire world upside-down.
#2 has the hiccups. It is so cute!
I almost can't believe how my heart has grown to love my family. Yeah, I'm exhausted. Yes, most days there are moments where all three of us are crying. But I am blessed to have two amazing daughters and one supportive husband that deals with the craziness.
Sunday, January 20, 2013
Almost Not Perfect
Height 75%
Weight 25%
Average the two together and she is only at 20%. If she gets down to an average of 15% we have a problem. She is slowly falling off the weight chart.
Walking: She has done it once for Hod and once for me. (Well, not actually for us, we have both just caught her doing it once.) As of right now she is still in the normal range for not walking.
Talking: She doesn't really. But she is able to communicate a little, so we are still in the normal range for that.
Sleeping: She is on a regular pattern, but not yet sleeping though the night. The pattern suggests that she should be able to sleep through the night, but she just isn't. For her age that is still considered ok, but just barely.
However, unless we see some major progress in the next three months we get to start meeting with a ton o people. If she starts to really walk, then they expect her weight will plummet. If her foot size is any indication she is just going to get taller, so she really needs to eat better or she will fall off the weight chart. If that happens we will be meeting with a dietitian. I am going a little bit crazy trying to get her to eat. The only foods she will always eat are milk and yogurt. Everything else is so hit and miss it drives me crazy. I no longer prepare food for myself because I know I will just end up eating what I make for her. I have a friend who is a dietitian and she has already given me a few tips to get some extra calories in her milk and yogurt. Coming from a family that has struggled to lose weight it is strange that I am working so hard to get my daughter to gain weight. I think she gets that from her dad. (Seriously, before he started a new med that can make you gain weight he could eat pure fat and not gain weight. You know the stuff you cut off of your steak cause it is just fat? He could eat it, and enjoy it, and still stay the exact same size.)
If she doesn't start walking by her next well check we will have to meet with physical therapists.
If she doesn't start sleeping through the night then we will have to run a bunch of tests to see if she maybe has sleep apnea or something that is preventing her from really resting. (And according to my Dr, the answer isn't just to ignore her when she wakes up at night. We talked about that extensively. With her current sleep pattern that isn't the problem I guess.)
If she doesn't become more vocal then we will start speech therapy.
Now, I realize we have 3 months. That is 1/5 of her life. That is a long time for a kid her age. I just worry that with #2 showing up any day I will have a hard time working as much with #1 as I need to in order to give her the best chance of making the goals we have set.
I talked to the Dr about possible ... What is the politically correct way to say it? Is this just a small developmental delay, or is this going to be a permanent life long problem? In some ways she seems SO smart, but the fact that she is all but behind in everything makes me nervous. As of now the Dr doesn't think it is anything like that. But I still worry. I have quite a few friends with special needs kids. They go through a lot. I can't really imagine what life will be like if we join that group and I have such a young baby as well.
I've never really felt like a paranoid parent. I have actually had a lot of moms tell me that I am super chill for a first time mom. I'm not so chill anymore. Most days feel like we are fighting all day as I try to get her to eat or speak or walk before I will help her with things. I thought we were dealing with possible tantrums before but that was nothing compared to what we are doing now. I miss my sweet happy girl. It is so hard to watch her throw fits and have to ignore them. I know what she wants. I know how to make her stop. But then she won't learn. Then she will just stay behind.
I've had a lot of other moms tell me that I don't need to worry about it. All of these things will happen when they happen and it isn't a big deal. That is what I thought too, but apparently if she is behind in all of these things there could be something else going on.
I love #1 so much. In the past few weeks we have grown closer as I have slowed down to spend more quality time with her. Our days of just the two of us are rapidly coming to a close and I will miss them. Don't get me wrong, I'm excited for #2 to join us, but I know that will change everything in our lives. I cherish the time I have with #1.
So yeah. That is where we are. I hope that I'm just worrying over nothing and in the coming months something will just magically switch on and all of our problems will work themselves out.
It is going to be an exciting three months!
Thursday, December 27, 2012
Anxiety, Diabetes, Pain, and Advice
Today Hod wanted #1 and I to meet him for lunch. We went to a little burger place and discovered #1 needed a diaper change. They didn't have any sort of changing station. Hod went to change her in the front seat of the car. As I waited for our food he called me in a panic. #1 had MAJOR diaper rash (she had been in the diaper for less than 25 min, I'm really not a major slacker. She had been fine then.) And she had managed to get urine all over the seat. She was actually getting blisters it was so bad. She doesn't have a dr yet so we went to the local urgent care. While there I was in some pretty intense pain. Not labor, but not right. The dr saw #1 and talked to me, telling me I needed to go to labor and delivery.
We called some friends to watch #1 for us and headed over to the hospital. This is what we now know: I am borderline diabetic. After the three hour glucose test my Dr's nurse called me and told me I was fine. No other details, just "fine". Today I learned that if my numbers had been just one higher I would be listed as diabetic. I'm that close, and you couldn't tell me to limit my hot chocolate? No wonder I have felt so lousy.
Along with this I have "floating anxiety". Basically I am so stressed out that I am hurting myself. This is why I can't sleep and why I am in so much pain. It is bad enough that if I don't figure out how to change something I will have to be medicated or it could harm #2. Oh, so you mean all the times I tried to talk to my dr about how I was feeling and he quickly told me "your baby has a normal heart beat, you're fine." He was actually wrong? Lame-o. I have been thinking of getting a new dr for a while, and today was the final straw!
After finding all of this out, I talked to the nurse in labor and delivery about doctors. She told me that in an emergency she would love to have my current dr, but if she wanted to be listened to, she would find someone else. So she gave us a recommendation. We asked for the phone number. She just had the dr come in and give it to us. I am very excited to try this new dr! Even just the 5 min we talked I felt like she has learned more about me than my current dr did in a month. So glad to have a dr I can feel confidence in!
Saturday, December 15, 2012
Molding Young Minds
Friday, December 7, 2012
Love It!
Not long after we moved to our current place, I often found #1 looking at books. (I posted a picture, but I'm doing this from my phone so I don't know where the picture will be.) I love that she loves books! Her current favorite is to grab a book, crawl over to me with it, pull at many arm till I give her my hand, put the book in my hand and then stare at it expectantly. It is so cute, how could I turn her down? Though I am sick of "Moo, baa, la la la" it is fun to watch her face light up as we read the story. For some reason the last page always makes her laugh a little. I don't get it, but it sure is cute!
Monday, November 19, 2012
It's Alive!!
Well, with #2, it couldn't be more different. Around 11 weeks I thought I could feel her moving. (I know, that is super early, but there was something moving around inside of me and it wasn't a normal feeling. It was new.) Hod has been able to feel her for a few months now. She is a wiggler and a kicker! Most of the time that is just fine with me. It makes me giggle when I get a minute to sit down and read, and I rest the book on my tummy only to have #2 kick it off. I have been amazed at how it feels when she kicks. It is so different than with #1.
Part of me thinks that #1 and #2 are already friends. Well... maybe friends is the wrong word. Every time I am sitting with #1 and #2 kicks, #1 gets a concerned look on her face and hits my stomach. Then #2 kicks back and they go on for a bit. I think this is how they communicate their plans for the night time. They have this awesome schedule where every 45 min #2 will kick my bladder as hard as possible, thus waking me up and often making me run to the restroom. Along with this, every 4 hours #1 is waking up and wanting to play.
This makes for a pretty tired Paily. But it is a lot of fun feeling all of the kicking going on!
Thursday, October 25, 2012
This and That
In other news: #1 has her first birthday on Saturday! It was this Thursday last year that I was finally able to meet her. What a sweet girl! And I have been AMAZED how much she has changed in the past week. She is so close to walking. She is also just seeming much more mature. It is like something just switched on in her comprehension center. Now when I take her empty cup and tell her that I am going to give her more, she doesn't scream, she just looks at me excitedly. It is quite wonderful. She is also exploring the option of pushing boundries. As bad as it is, it just makes me laugh when I tell her no, and she gets a big smile and moves to do it all again. I'm having to work very hard on my serious face. Her giggles may be cute, but we do need to learn here. But it's so hard to be serious with that sweet smile and laugh! She is also finally sleeping for longer stretches through the night. I think with all of the craziness of our life she has had a really hard time. This has been evident in her sleep. It has not been uncommon for her to wake up every 2-3 hours. That is way to often for a one year old. But this past week she is normally waking up once around midnight and again around seven. (Most people would count waking up at 7 as morning, but she is still tired and with a little coaxing will go back to sleep.) Naps still leave something to be desired, but I blame that on all of the random people stopping by my apartment. Seriously, friends. You do not need to beat down my door. And your knack for stopping by approximately 3 minutes after my daughter falls asleep would be laughable if it wasn't so darn inconvenient.
Anyway, life is good. But I better run. #1 is chewing on the coffee table again. "Dear, you aren't a beaver. If you're hungry, I'm happy to get you some food!"
Monday, October 22, 2012
Perfect
Enter my dear Hod. Anything before 9:00 is too early to him. Right before we were married Hod was living with my parents (long story). One of the first mornings I got a call from my sister around 9:30 asking me if Hod was dead because he hadn't surfaced yet. For much of the beginning of our marriage I would wake up around 8, and then wait around for an hour or so before forcing him out of bed just because I was bored. But slowly over time, he has converted me to sleeping in. Now, I can happily sleep til at least 8:30.
However, the days that #1 sleeps past 7:30 are few and far between. To allow me to continue my laziness I just pull her into bed with me and give her a bottle. Some mornings she goes back to sleep, some mornings she doesn't. Either way, when she really does decide to wake up after some quite enjoyable snuggling, she is just full of smiles. She likes to play with my hair, and my lips, and make cute noises, and her eyes sparkle, and she does my heart good.
Even though it is earlier than I would like, it is pretty much the perfect way to start the day. I hope I can find a way to continue it after #2 gets here.
Monday, July 30, 2012
Sleep!
Last week I spent 3 nights at my Mom's while family was visiting. The first night was a living terror. The second night was really good. The third night left something to be desired but it could have been worse. I was excited to come home so she could return to decent sleep in our home. (Well... kind of decent. She never sleeps for more than 3 hours in a row, but I needed her to get back to that.)
I don't know what happened, but she lost it. It is like we never sleep trained at all. When we put her to bed she SCREAMS for anywhere from 10 min to 70 min. She does this for naps, for bed, always. She has also started waking up at midnight and wanting to play. No matter how much I haven't played with her she has still taken 2-3 hours to get back to sleep. She has also learned how to pull herself up really well. Last night I caught her as she jumped up while flinging her head forward and trying to get out of the crib. So she spent the rest of the night with me, cause I was too tired to fix her crib.
Hod and I talked this morning. We lowered her crib again and now I can not pick her up unless she is standing. This makes night time feedings a problem. Before, when she would wake up, I would help her lay down and then prop a bottle in her mouth. (I know, you're not supposed to do that... it leads to ear infections. I've been doing it for 6 months and she has never had an ear infection.) I can not prop a bottle anymore. So, this is what we did. We spent the day rearranging one of the spare rooms, and moved her. Tonight I will feed her once, but it must be after 1. I am expecting a rough night with a lot of screaming. I warned our downstairs neighbors and I'm a bit nervous. But it just has to change! Wish us luck!
In other news, for a bit of venting.... I really hate drivers sometimes. Let me tell you probably my biggest driving pet peeve. Imagine with me, cause I'm sure you've had this happen, that you are sitting at a stop sign and want to turn... let say right. While you are waiting for a time you can go, another car pulls up next to you because they want to turn left. However, they can't see past you, so they pull up further than you, thus blocking your view. Oh, do you not have this problem? Are you in a van? Cause I'm in a car. I drive a cute little Mazda wagon. Me and my little "Zoom, Zoom" (or "swimsuit" if you know that story) car are short. Vans, Jeeps, SUV's, large trucks, they are all a few feet taller than I am. So, not only are they blocking my view with their length because they pull so far into the intersection, but with their height. Many of them could look over my car, but they seem to forget that. Then we can do the struggle of I pull out further, they pull out further and we are both going to get hit by cross traffic because we end up so far into the intersection, OR I can just be ticked and wait. That is what normally happens. But I was there first! It also happens to me when I'm trying to turn left. Why can't they wait their turn? Or, look over my car. Or look through my windows, they aren't tinted. (I've looked through the windows before so I don't ruin their view.) Really, please, do Paily a favor, and don't do this to people! It is just rude.
*And, lest anyone think it is just a dumb thing where I am from, in the 4 states that I have lived in and driven in for over 6 months all have had this problem.*
Let us all be nice, and let us all hope that my daughter will sleep!
Friday, June 29, 2012
Fat Lip
Sunday, June 24, 2012
Jail Time
About 10 days ago, we had my family reunion, then I had a friend stay with us. All of that time really threw off #1's schedule, so she's been struggling with the whole putting herself to sleep thing. Tonight, however, she went down very nicely.
Then, about half an hour after she fell asleep, she started crying again. That's never happened before. But the neighbors downstairs just slammed the door. I bet that was it. I hate hearing her cry, but I knew it would only be for a minute.
Then her cry turned into a whimper. It was the saddest thing in the world. I tried to be strong, I really did, but I just had to go give her a hug and tell her that I loved her. Hod put her to bed tonight, and I am so grateful for his help, but I've found it makes it harder for me if she starts to cry. So, I tell myself, "Man up, Paily! It's all good!"
The self talk didn't work. I went in to give her a hug. As I picked her up, I discovered that I couldn't. Her foot was stuck between the crib and the wall! She was whimpering, and reaching for me, and I couldn't reach her, and I couldn't get her foot to turn, it was so sad! Then I remembered that the crib is on wheels. I pulled it away from the wall and was able to save my daughter!
She's no worse for the wear. Her ankle still moves and she doesn't even act like it bothers her!
But now I feel like the worst mommy in the world.
Wednesday, June 20, 2012
Being Deceived
Most of the time.
Tonight I was playing with #1 when a foul stench entered the room. I knew where it was coming from and was prepping myself for changing a pretty messy diaper.
Deep breath, get ready, and....
Nothing. It was just wet.
Sometimes I love being deceived.
Wednesday, June 13, 2012
Lazy Bones
Seriously. Back in the day I told you about her lack of wanting to reach for anything. It wasn't that she couldn't, she just didn't. We worked, and worked, and then she finally started reaching.
She doesn't sit. She loves to stand. She loves tummy time. Heck, she even likes time on her back. But, sitting? Nah, she'd rather flop onto her tummy.
She can get around. She can scootch, she can kind of crawl, she can roll, she's awesome. However, if I'm in the room she just doesn't care. She'd rather put her head down and cry til I get her toy for her. I'll tell her that she can get it herself, but she just keeps looking at me with her super pitiful face as if to say, "Hey, Mom, why won't you help me?" Somehow, though, when I'm in the shower she manages to keep all of her toys with her and she is perfectly happy.
I have a sweet girl who wants to be Miss Lazy Bones!
On another note, she has started giggling more. I love it!
Thursday, May 24, 2012
Growing
We went to my OB and told him about it. He informed me that 10% of pregnant women just get depressed. Seriously depressed. Something about how the hormones and chemicals change in their body during pregnancy just make them a little crazy. So I was put on medication so I would stop wanting to hurt myself.
It worked, and I was very grateful.
However, women who have this problem are pretty much guaranteed to have postpartum. Breastfeeding helps with that. But #1 had a problem with my medication so we had to stop breastfeeding.
It's been a little bit of a struggle. #1 has such a great smile and I love her so much. However, some days... I just didn't care. I didn't want her to die or anything, but I just didn't care that she was here.
Can I just tell you the guilt that comes with that? While I was pregnant (and not loving it) I think I offended at least one family member when I didn't say that it was the greatest thing ever. I had multiple people in my life who desperately wanted to be pregnant. I was pregnant and didn't like it. That would hurt. Then I had a beautiful baby. I had friends and family who wanted a beautiful baby. I had multiple friends and family who lost their babies through miscarriage and stillbirth. But I wasn't happy. And then I just had more guilt. I had everything that they wanted and I didn't cherish it always.
It has been a long struggle. Some days I had so much love. Some days she was just a fun kid that I watched. Some days I just didn't care. But now, I think I'm there. I can't even explain the amount of love I have. Something about this girl just makes my heart melt. I wish there were words to really describe how I feel. I just want to squeeze her and kiss her all the day long.
Being a Mom is becoming a great thing.
And in case you are wondering, Marionberry Yogurt is good. It's by Tillamook, and delicious!
Monday, May 21, 2012
Enjoying Life
This is #1's favorite face to pull. At some point I'm going to have to teach her not to stick her tongue out... but for now it's just cute! This is a dress we got from my sis, Laree. It's almost too small.
Along with being tall, #1 is also up to things like this:
Thursday, May 10, 2012
Being Selfish
However, today, I found something that I am doing just for me. #1 is teething. She only kind of likes her teething ring or any other toys. Her choice would always be to chew on my finger. And I let her. It's not a big deal. I wash regularly. Today I took that privilege away from her.
Now that the top of her front right tooth has broken through her bites hurt a lot more.
From now on, my fingers are for me only! ... Not that I chew on them, but you get the point.
Yeah teeth!






