Modeling For My Sons

I'm going to be honest. I like it when my sons see me upset. Why? Because then they see me get over it. They see me become calm, kind, and even joyful again. I can be so very angry. I express it, sometimes vehemently. And then I let it go. I can be sobbing like somebody just died. Half an hour later I'm hugging and kissing them and my sense of humor has returned. I always explain why I'm feeling what I'm feeling, and I apologize if needed, but then the past is in the past and it's time to move on. Grudges, pining, and ruminating are a waste of energy. Forgiving, letting go, and trusting: those take far less energy and result in so much peace and happiness. I hope that's what my sons see in me, and they grow up to be men who can feel their feelings fully, and then let them go.

Good Mourning

It's 5:00 in the morning and I've been wide awake for the last hour because I had an upsetting dream. I was pregnant. My partner wasn't thrilled about it but he was being supportive. I was very happy about it. I went into labor early and had to be rushed to the hospital. That's where the dream ended.

I felt so sad when I woke up. I'm just laying here thinking about why that is. I think I'm mourning that I'll never have a "normal" pregnancy, a "normal" birth, and a "normal" child. We get what we get in life, and we get it all for a reason. I believe that, and I wouldn't trade my life or my children for anyone else's, but I don't think I've really come to full acceptance yet.

Seven years, and I'm still grappling with the situation of my pregnancy and the boys' birth. In some ways I think the wounds ache more now then ever before. Maybe it's because I'm in a safe, supportive relationship now, in an emotional space where I'm able to feel these emotions and work through them. Maybe it's because I wish I could make a child with the wonderful man I'm with. I hate focusing on negatives, though. Maybe that's why its hard for me to accept that I have these feelings. I just want to be grateful for what I have. Sometimes it is so tempting to feel sorry for myself, and I just don't want to go there.

The truth is, I wanted a different path. I wanted to have a child while in a supportive, loving relationship. I wanted a healthy baby. I wanted to nurse. But beyond that...God, I love my children so fiercely. They are beautiful, healthy, smart, funny, and amazing. "Normal" isn't really a word in my family's vocabulary, anyway.

Long Overdue

This virus, followed by bronchitis, followed by gastroenteritis diet really works! I've lost my holiday weight gain plus some! Seriously, how is it possible to be dehydrated but still have post nasal drip?

Over the holidays I put our Christmas train around the tree. I told Spencer, "It's a decoration, not a toy. You can look at it with your eyes, but not touch it with your fingers." He replied, "But Mom, my eyeballs are in the ends of my fingers!"

Here's a video of the NICU where Alex and Spencer spent the first three months of their lives.  There are quite a few pictures of us in it.  It's a beautiful way to show them what we experienced there.  I hope you'll consider giving to the March of Dimes, the AMC Children's Hospital, or Ronald McDonald House Charities of the Capital District.  They are all part of the miracles that Alex and Spencer are.

When things happen I think to myself "I need to blog about that!", but I always get busy and then forget what it was I wanted to share.  I'll be back when my memory decides to serve me better!

Thanksgiving 2010

I'm Tired

I'm usually a pretty optimistic person, but I'm having a hard time this week.  I hate to complain, because I'm grateful that my boys are as healthy as they are, but I'm tired.  I'm tired of taking a 5 year old to the bathroom every hour because he doesn't know when to go himself.  I'm tired of fighting with him to get him there.  I'm tired of fighting with the other one to wash his hands after using the potty.  I'm tired of cleaning up pee from two 5 year old boys who can't seem to get most of it in the toilet.  I'm tired of having to give Alex what amounts to feeding therapy at every meal.

I know there are people who have it a lot worse.  It's just hard this week because Spencer got a diagnosis and we're realizing that we really need to put a lot of time and energy into helping him, too.  I thought he was going to be my "normal"* child, after he got over the delays due to his prematurity.  I thought he would be the easy one, but he just keeps getting harder.  I know, I know: now we have a diagnosis and can get the help we need.  I'm just tired right now, tired of working so hard.  Parents of typicals have no idea how easy they have it!  I wouldn't trade my kids in for any others, I just wish I could have an easier day once in awhile.


*Normal is overrated, and non-existent anyway.

Struggling with Spencer's Diagnosis

I'm having a really hard time with accepting that Spencer is not a more typical child.  I know it sounds awful, and it's just something I'm sorting through, but I was kind of holding on to the hope that at least one of my boys would be more typical.  I kept thinking that his behaviors were just the effects of his age and some sensory issues.  They were becoming more problematic at home but I thought it was just a stage he would outgrow.  I had no idea until this week how much of a problem his behaviors at school are.  I don't know if I was just in denial, or if his teacher and I just weren't communicating enough.

I was thinking to myself this afternoon "How am I going to parent two kids with special needs?" and then I thought "The same way you have been, silly!"  The diagnosis doesn't change anything.  It just gives us tools to use to help Spencer.  I have to accept that he needs that extra help.  I have put so much time and energy into helping Alex.  Now I need to split my attention more and give Spencer what he needs.  I'm just feeling overwhelmed by it all right now.  Need to take some deep breaths and do some more reading.

January 19, 2010

This morning Mike asked Alex to come to the table for breakfast. Alex whined and said something to Mike (he can't remember the exact words) to indicate that he needed a new diaper. He was poopy! This is the first time ever he has let anyone know he needed a diaper change! Whoo hooo!!!

I noticed this morning that Spencer looks even taller next to Alex than he did a month or so ago when he was measured an inch taller. I put them back to back and I swear he's got close to two inches on Alex. He's a Spencer sprout!

I'm beginning to think I have ADD. I can't concentrate on one task for more than five minutes. My mind is always wandering and I can't keep track of my thoughts. I can't remember something somebody told me two minutes ago. It's making schoolwork exceedingly difficult!

Counting and the Human Body

Alex learned how to count backwards from 10 from a toy about a year and a half ago. He knows how to count to 40 or 50, by rote. Lately he's been counting backwards from 20. He just figured out how to do it on his own. My little smarty. (I especially love when he says "five-teen.")

Spencer is very interested in the human body. We've had many conversations recently about bones, skin, and various organs (he finds the word bladder particularly hilarious). He told me today that he has a "drain" and that's where his "poopy" comes out. Future doctor? Or plumber?

Growing Boys

I bought jeans for Alex and Spencer in September and they were so long I had to roll them up. Now they fit perfectly. Spencer's new shirt for the start of the school year that was big on him is now getting tight. He grew four inches over the summer. I thought the growing was supposed to slow down during the winter. I still can't grasp the fact that they are caught up with their peers in size. I still think they're so little, but they're not.

Mike and I were buying groceries yesterday and I realized that when Alex and Spencer were born they were smaller and lighter than the loaf of bread we were getting. Amazing!

Alex's Communication

Last night my sister walked outside with Alex in her arms and he said "I see the car," with absolutely no prompting. Today I handed him a book, "Peekaboo Zoo," and upon seeing the animals on the front cover he said "Zebra!".

Alex and Spencer Update

Alex started school on February 11th. He loves it! He gets so excited when we pull into the parking lot in the morning and wants to run down the hallway to his classroom when we get inside. His class has eleven children. Five of them are universal pre-K students, the other six are special needs students. There's only one other child who is under the age of four. In addition to the teacher there are four full-time aides and one "lunch aide" (who is actually there for four hours). I'm very pleased the with adult-to-student ratio. In the afternoon it gets even better, because some of the children are only there for half the day. Alex gets plenty of one-on-one time. He sees his physical and occupational therapists twice a week. Right now the center is short on speech pathologists, so he doesn't have individual speech therapy sessions, but it's a language intensive program and I'm not worried.

In the few weeks that Alex has been there I have noticed that he pays a lot more attention to people coming and going, saying "hi" and "goodbye" more readily than in the past. He is also eating much better with a utensil. He is pointing to and labeling pictures in books. I've discovered that he thinks of himself as "Ally," not Alex; it's how he always refers to himself. Alex comes home in the evening very tired and usually doesn't want to interact directly with Spencer and me much, but he is still full of hugs and kisses for both of us. He shows that he misses us in his own, loving way.

Spencer is busy learning all kinds of new and fun things. His newest passion is puzzles. He is working on 12 piece jigsaw puzzles and actually doing quite well. He will focus on a puzzle for nearly half an hour without getting distracted or frustrated. I'm really amazed. Spencer continues to lag behind in his speech and language and is now receiving speech therapy twice a week. He continues to receive physical therapy once a week. He still runs like a much younger child and doesn't jump with two feet in the air (a 24 month skill). In all other respects he is pretty much caught up to his peers. At his appointment with the developmental pediatrician two weeks ago the doctor was amazed at the progress Spencer has made since his last visit six months ago. He no longer has to visit her unless a concern comes up.

Spencer gets to go to a preschool setting three times a week for four hours. I help out my sister with childcare and in return he gets to be with his peers in a creative learning environment. It is good for him; even his speech therapist has commented on how it's helped his language. He and Alex are about the same size now. Spencer has had a voracious appetite ever since he recovered from his Christmas stomach virus. Judging by the size of his belly I expect a good growth spurt this spring.

Just 29 days until Alex and Spencer's third birthday. My how the time has flown! They're not babies anymore, they're not even toddlers. My boys are pre-schoolers!

A New Chapter In the Life of a Mom

Alex is going to school. Five days a week, five and a half hours a day. My baby. After 30 months of doing it all myself, every therapy session, every single day, I am placing the care of my precious little Ally Bear in strangers' hands. At first when I knew this was soon going to be a reality I panicked. It's been just me for so long. The idea of letting someone else take the reins, be in control of his services, take care of him for so many hours every week, scared me. "What if they don't understand him the way I do?" I thought. "What if he gets worse because he can't communicate with them?" And then the fact that I would be with Spencer all day every day, and not Alex, hit me like a punch to the gut. That's going to feel so strange, like I'm constantly forgetting something; and a bit unfair, spending so much time with Spencer and so little with Alex. And what will it be like for the two of them; will they feel like a part of them has been left behind somewhere?

After a little time I've begun to come to terms with loosening the proverbial apron strings and letting Alex begin this new adventure without me. He will spend his days being cared for by people who are trained to help children like him. I will have a break from constantly trying to communicate with a child who is, while very sweet and loving, at times very frustrating to deal with. I will be able to turn my attention more fully to Spencer, who wants to learn and do so many things that I just haven't had the time and energy to share with him.

Most importantly, Alex will essentially be getting services all day, every day. There will be an adjustment period, but soon the effects of being in an integrated, special-education classroom will begin to show. I have no doubt that Alex will blossom as a result. He has always given us all such great hope as he progresses, sometimes by leaps and bounds, and I know that with the increased intensity at which he'll be receiving services his development will accelerate. Alex will soon be surprising us even more than he has in the past.

It is very important to me that Alex's current providers know how precious they are to us and how thankful I am for everything they have done to facilitate his development and my education as a parent. We will continue to see Terry and Lisa, as they will provide services for Spencer until he starts preschool next fall. I want Kathy to know how much we loved having her as Ally's occupational therapist, that the swinging song will always be part of our repetoire, and that we won't forget all the other wonderful things she shared with us. We will miss Christina more than anyone. She is, by far, Alex's favorite person (other than Mommy, of course). He responds to her best of all and has a wonderful bond with her. We're always happy to see her step through our front door and have enjoyed her energy and positive spirit so much. Each of these women have been a precious gift in our lives. The memories of our times with them, the knowledge they have shared with me, and the gratitude for how they have helped Alex and Spencer flourish will always be with us.

I truly do feel as though this is a new chapter in my life as a parent. We've come so far, from those days in the NICU when my babies' lives were hanging in the balance, to being two months shy of the third birthday of two healthy and very active toddlers. I have been flying solo for 34 months. Letting go, seeing one son go off to school and knowing that the other will follow before too long, working part-time with my sister, beginning to think about going back to work full-time, and welcoming an unexpected and wonderful new partner into my life...so much is changing. It is both scary and exhilarating as I look forward to the exciting things life has in store for my family and myself as we begin this new leg of the journey.

My Little Tenor

Alex is pretending that the soap dish is a keyboard. What song he is singing is anybody's guess (probably something from the Wiggles).

Christmas

I'm not feeling very inspired to post about Christmas this year. I wish we could do it over again without the stomach virus. Spencer came down with it the day before Christmas Eve. I succumbed to it late Christmas night. Unfortunately we didn't know it was a virus until too late, so my mother and friend came down with it, too. Merry freakin' Christmas!

I planned our Christmas schedule so that we could be at home together for a quiet Christmas day. I thought that I would see my sister and her children on Christmas Eve and could exchange gifts then. That didn't happen. We still haven't exchanged our gifts. We're getting together tomorrow at Mom's. I guess I should look at it as though our celebration has been extended. I'm sure all the children will enjoy being together tomorrow, and I'll finally get to see what's in my stocking!

I had to drag Spencer out of bed at 9:30 on Christmas morning. I'm surprised he's actually smiling in some of the pictures. My neighbor snapped him a little later, falling asleep, half his body on the couch, the other half on the coffee table. Poor guy. He's feeling a lot better now and enjoying all of his new toys. His big gift was a learning laptop. Alex would like to steal it from him. He was playing with it on Christmas day and Spencer was trying to take it from him. Alex kept saying "Alex....Alex." He was trying to tell Spencer that it was his toy! Alex also tried to steal his cousin's new Thomas the Tank Engine book. He's hardly put down his new Gordon train that came with his big gift, the Take-Along Thomas Tidmoth Sheds. That boy loves his trains!

I snapped a few pictures while the boys were emptying their stockings. That's about all I had the time and energy for. I think we're due for a better Christmas next year. You hear that, universe?!!?

Ally's Play

I just observed something about Ally's play that I've never noticed before. He often plays by himself. We (his therapists and I) have always thought the he perseverates on cars and trains because he likes the wheels and mechanics. What we haven't noticed is that he is engaging in pretend play with the vehicles. They are always facing each other or him (yes, the toys have actual faces), and he makes them "talk" to each other! I thought he was just babbling gibberish to himself, but today I heard them tell each other "Come on!" and call each other by name (Toby and James). I think he was even trying to make them kiss after I kissed him! He also says "choo choo" and makes the whooshing steam sound.

I know I'm always talking down the boob tube, but I think the Thomas the Tank Engine video actually helped teach Alex this kind of play (watching "Cars" at his Aunt Chappy's last weekend probably didn't hurt either). That doesn't mean I'm going to let him watch more television, it just means I won't feel so guilty when I do.

Potty News

Spencer went pee-pee on the potty! Spencer went pee-pee on the potty!!! I sat him on it after bath (I've done this once or twice before). I told him to push out his pee-pee. First he pushed out some gas and tooted, then I told him to push again (and made a hissing sound) and he did it! He actually understood what I meant and he did it! He's also been telling me when he's poopy, and when he toots he says "poopy." I guess it's time to start reading up on potty training. Woo hoo!

Alexander's Diagnosis

We made another visit to the developmental pediatrician today. The boys have been seen bi-annually by this practice since just before they left the NICU. At their last appointment four months ago Dr. T suggested that Alex might fall under the autism spectrum and that she would like to keep a closer eye on his development. Today we visited again, reports from his various therapists in hand. After inquiring as to my observations about Alex's development, attempting to evaluate him (he was very difficult to engage), and reviewing the reports from his therapists, Dr. T delivered the expected diagnosis: PDD-NOS.

As Dr. T explained, reaffirming my already strong beliefs, the diagnosis changes nothing. Alex is still the same child. The diagnosis is simply a tool to help Alex get the services that he needs. I know Alex is going to be fine. He may always be different, but he will learn how to get along the best he can in this world that expects everyone to be the same. What matters is that he is healthy and happy. What matters is that Alex knows that he is unconditionally loved, and that he always believes in and loves himself.

Testy Two-Year-Olds

How does one find that balance between being too restrictive and being too permissive with a two-year-old? How do you find the place that allows him to explore and learn self-moderation but doesn't put him in danger and drive you, as his parent, crazy? And then how do you do it when you have TWO two-year-olds, that either work in cahoots or go in completely opposite directions? Why can't there be two of me, and why can't they both be a little calmer, less reactive?

Yesterday I came downstairs to find them both in the kitchen (gates do no good anymore). Spencer was having a condiment party (time to buy a refrigerator lock) and Alex was covered in oven grease. Both the oven racks were on the floor and judging from his appearance he had climbed INTO the oven!!!! (I bought an oven lock but because of the way the stove is made it won't work).

Today Spencer broke a nightlight. I'm upstairs trying to vacuum up the glass, and up comes Alex, crawling onto the landing, right into the mess! I finally get it cleaned up without any injuries, and downstairs I go to find Spencer in the fridge again, trying to drink ketchup from the bottle.

Have I mentioned that Spencer can get through any gate or door? He's like Houdini! I've been yelling a lot lately, and I hate it. I hate yelling. Then I cry because I'm so frustrated and scared that they're going to hurt themselves, and then Spencer cries because he doesn't like to see me upset. And Alex withdraws. As if Alex needs to withdraw any more than he already does. Spencer gets so much attention because he demands it, and Alex, who needs the attention so badly, gets forgotten.

This was just supposed to be a quick, light-hearted post about the wiles of my two-year-olds and now I'm sitting here with tears in my eyes again. To be honest, I'm scared. Scared that Alex will retreat further into himself and become full-blown autistic, scared that I'm going to start yelling and never going to stop, that my children will be afraid of me, won't be able to trust me.

Okay, I'm tired. We all have a cold. "Weeping may remain for a night, but joy cometh in the morning." A Bible verse from my religious days that always help me remember that things will look better after a good night's sleep.

Halloween Pictures

This is all I've got. I don't think I mentioned that Spencer broke my digital camera. I need to buy a new battery and some film for my Olympus. The camera phone only takes good pictures if my subject isn't moving much (i.e. does not take good pictures of two-year-olds).