Putting on my oxygen mask first

For a very long time, I have been in survival mode.  It seemed to start sometime in Spring 2008 when Liam was 9 months old and his sleep went to hell.  Then there was an overseas move, then an unexpected pregnancy, then morning sickness, then pregnancy while caring for a 30 pound child who did not walk well, then pre-term labor, then Ben's birth, then Ben's reflux, then Liam's delays and diagnosis, then Dave's deployment, then  the move to Alaska, then Dave's non-stop travelling in 2011, then Ben's developmental delays, and then moving back to Alabama.  Suddenly, I have been in "survival" mode for 4 years; do you know what type of toll that takes on you mentally, physically, emotionally?

So, I decided to "put on my oxygen mask first" to ensure I could keep taking good care of the boys.  First, I started exercising.  I joined a 90 day challenge with some friends from Alaska and started working out 5-6 times a week.  I have been doing Yoga Booty Ballet by Beachbody.  The workouts are 35-40 minutes and I do them about 6am.  Dave helped keep me motivated in the beginning.  The results? 6 pounds lost, 5 inches off my waist, 2 inches off my hips, 1 inch off my chest and each thigh.....10 inches lost all together!

I also started anti-depressants after much soul searching about it.  The truth is that I have EXCELLENT coping mechanisms and I had been coping adequately for 4 years, but after four years, my coping mechanisms were worn thin and suddenly I was no longer the type of mother or wife I wanted to be.

Not sure where to go from here

I have lived here before, so I thought I knew the landscape, but things change in 2 years.

I knew that by placing Liam at a private school, we'd lose his IEP.  I battled with anxiety over that for months.  He has started school (will be a seperate post) and I now am confident that was the best choice.  I am still on the fence about initiating a transfer of Ben's IEP as I expect he will lose it after they re-evaluate him, especially since his only diagnosis is vague.

I did not expect getting private services to be so difficult.  We planned to use Liam's BCBA we used in 2010.  She is not responding to my attempts at contact and when I called Liam's ECHO case manager, she could not find her name.  I got a list of other BCBAs, but it doesn't look hopeful for ABA to work out.  I can get services from 4-6pm or I can drive to Auburn.  Honestly, I am not sure how I feel about either choice.  I can be judgemental and have high expectations and the services offered here in Montgomery did not meet my expectations.  Auburn seems promising but that is a way to drive with two small kids....and the place would be starting therapy at 3pm.  I actually planned to phase out ABA next year as I am not sure it fits Liam's needs anymore.  I am okay with giving it up this year, but I want to make sure he doesn't regress.

Speech services are non-existent here.  The base doctors are referring to only one place and they have a 1 year wait list.  We leave in a year.  I called the place where Liam did private speech last year.  They have a waiting list but it was small and I was really impressed with their new director of services.  I called Tricare to change Liam's referral but was told that center is considered "out of network."  I remember it was when I lived here last, but the Tricare person changed it for me.  This time the Tricare person was quite snotty and said she didn't care if the place he was referred had a 1 year wait list.  I would need to take Liam back to his PCM and the PCM would have to write a justifcation which the snotty Tricare lady said could then be denied.

I cannot have Liam have no IEP, no speech, and no ABA.

I am having trouble figuring out where to go from here though.

He will start hippotherapy in September and he is on a waiting list for OT.  I have looked into social skills groups and the nearest one is Birmingham and would cost $40 a session out of pocket.

Did I mention that I am having trouble functioning due to nearly crippling depression and anxiety and utter hatred of the heat?  No one from base will call me back and there are NO appointments for me to be seen.

And so the social exclusion begins.....

I am crying as I type this, my heart hurts, and I feel sick to my stomach.  Over the past 2 weeks, two boys from Liam's "typical" preschool had birthdays.  He was not invited to any parties, and I clung to hope that maybe neither boy (both military with no family in the area) had a party. 

Any delusions I had were just shattered.

There are 12 kids in the class: 4 girls, 7 boys, and Liam.  Liam has two boys that he is particularly close to: C and T.  C had a birthday in January, and I was surprised that Liam wasn't invited to celebrate with him.  C's mom had us over early in the school year, but Ben cried the whole time as C would not let Ben play with him.  The mom seemed frustrated that Liam said "yes" when offered milk but then didn't touch it.  Liam doesn't drink milk.  The mother knows of Liam's diagnosis but I guess didn't realize that means Liam cannot accurately answer questions.  In any case, there hasn't been another playdate.

This morning I overheard T's mom asking C's mom to leave a Saturday open for T's upcoming party.  They knew I could hear; they know their boys C and T play with Liam.  T's mom then went on to chatter at Ben about snowballs but no mention to me about a party.

I am going between being heartbroken for Liam and furious.

How can anyone excluse this sweet boy?

As if June 30th isn't bad enough

On June 30, 1983 my mom committed suicide. June 30th is always hard for me.  I go around with the lyrics to Fleetwood Mac's "Landslide" in my head:

"I took my love and I took it down
I climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
'Til the landslide brought me down

Oh, mirror in the sky
What is love?
Can the child within my heart rise above?
Can I sail thru the changing ocean tides?
Can I handle the seasons of my life?

Mmm Mmm... I don't know... Mmm Mmm... Mmm Mmm...

Well, I've been afraid of changing
'Cause I've built my life around you
But time makes you bolder
Children get older
I'm getting older too"

There are alot of reasons why I think of that song, but they deserve their own post.

In any case, I thought yesterday was a bad day and I was hoping to just kind of glide through today.  Those hopes were dashed when Liam threw up in his bed before 6am.  Now Ben has a bloody diaper rash.  Between my already sad heart, my awful chest cold and loss of my voice, one sick preschooler, and one sick toddler, I am wishing I could just skip ahead to tomorrow. 

How to teach empathy about differences?

A couple weeks ago, I changed the days of Liam's therapy so we could go see the USO's Sesame Street program on base.  This meant we encountered different children at the therapy center where Liam does private speech and occupational therapy.  On our way out, we met a teen-ager who had just arrived with his aide.  He was trying to take his shoes off himself (here in Alaska, shoes aren't worn indoors anywhere) and was struggling a bit.  The mud room area in this center is crowded and it was full with me trying to keep control of Liam and Ben, as well as two adult size males. The aide left, and Liam was just staring at the boy and commenting on his drooling.  The boy understood what Liam said and I could see the hurt in his eyes.  I told Liam it wasn't nice and he could try saying hi to the boy and maybe introducing himself.  Liam did as he was told and waited a minute before laughing and saying "He doesn't talk!"  I told him that he does talk but some people talk in different ways.  Another little boy, about age 5, came through and said "hi" to the teenager and he said "hi" back, so i pointed out to Liam that he does talk and maybe Liam should apologize.  While this is going on, I am trying to get everyone's shoes on and us out the door.  I was so uncomfortable and embarrassed.

So today after Liam's rehearsal, I wanted to change him back into street clothes so his shirt and shorts wouldn't get dirty before his recital tomorrow. I decided to go over near another family from Liam's class.  Liam was in the middle of sensory overload and completely floppy and uncooperative.  I was dressing him and he was just flopping his body everywhere and asking me questions with his tongue out of his mouth. The little girl from his class came over and asked why Liam was talking like this and she mimitated him.  I hadn't actually seen what Liam was doing as I had him on my lap facing away from me while I dressed him as that is the only way to dress him with floppy limbs, but as soon as she did, I recognized the tongue movements and weird faces as what Liam does when he goes into floppy mode.  I told her that some kids talk differently and he was tired.  She started getting in my personal space and her Dad called her away.  I think she was overwhelmed too as it was chaotic in there and overwhelming for even neurotypical kids.

Yesterday we had a similar experience; I was at a friend's birthday party.  Liam usually plays really well with hber 3 year old twins, but her male twin's best friend was there and they were refusing to let Liam in the playhouse saying they taped the door shut.  I tried to give Liam some suggestions for solving the problem on his own (asking them for the magic word, telling them he was sad to be left out, etc) but in the end he started screaming in frustration, and my friend told her son to let Liam in.  A moment later her daughter wanted in and all three boys told her she couldn't come in.  I said "Liam, remember how sad you felt, now do you want her to feel that way?"  Liam pushed past the other two boys and opened the door for her.

But how do I teach Liam empathy for things he hasn't experienced?  How do I help other kids understand Liam is different without them wanting to exclude Liam for being different?

The same old song and dance

This is a video I took a couple of weeks ago.  Before you watch it, turn down your volume as it shows Ben crying pretty hard.  While you watch it, think back to almost 2 years ago when I showed a video of his reflux cry.  That video can be found here: Ben's reflux cry at 7 weeks old  You can also compare how intense Ben's crying is to Liam's crying at almost the same age, as seen in this video showing Ben screaming from reflux and Liam crying from sensory overload: Liam during a sensory meltdown in reaction to Ben's newborn screaming

So, here is Ben crying at about 22 months old:

I wish I knew what causes this.  Ben wakes up from naps like this about 4 times a week.  He'll cry at this intensity for up to an hour.  I try different things to calm him, but nothing seems to work and then he just suddenly snaps out of it.  As you can see, he throws his head back, just like he did when crying from reflux pain at 7 weeks old. So is the screaming due to pain from reflux?  Can it be a night terror?  It has continued even with the chiropractic care, but occurs more often now since he naps more often.  I guess that is my punishment for having him nap.

After almost 43 months of having one child (or two) cry for over an hour a day every day, I am almost used to it.  Sometimes when I see how Dave reacts to this type of crying (he becomes frantic and tries to fix it), I remember that this isn't really normal. 

Day 1 out of 200, approximately.....

In the past 8 days, there has been a promotion, a diagnosis of developmental disorder, an ear infection, military paperwork, and Hurricane Ida, but nothing could stop this day from coming. I cannot explain how it creeps up on you. The news he was leaving was more crushing than the actual departure. He just walked onto a plane and waved to us, and it almost seemed like any other day, except he isn't coming back for a bit over 6 months. Liam chose this moment to call him "Daddy" for the first time, and called out "No, Daddy, No, Dadddddd-eeeee!"

I was okay for the moment and my friend Chrissy spent the afternoon for me. Tonight has been rougher as Liam has asked for Dave over and over and over again. The rain from Ida is pounding my windows and I just want to snuggle with my husband.

Crossing one day off the calendar and not thinking farter than tomorrow when Liam will be off school, and we'll go to Kindermusik.....

But June, please hurry and get here. And this is most important, Dave, please stay safe!

My husband rocks! Friday....Pre-deployment addition

To learn more about my husband rocks Fridays, go here: http://honestandlasting.blogspot.com/2008/06/my-husband-rocks-friday.html

This Friday, it is pretty simple...

When my husband got word he was deploying very, VERY soon to Afghanistan and would be leaving in 3 weeks for training, he did not worry about his safety, think about all he would be sacrificing, or feel bad about being chosen to go. Instead, his only thoughts were worry over the well-being of his family, thinking about all he would miss in the lives of his sons, and sadness over leaving us.

My husband rocks for caring more about his family than himself and for the sacrifices he is about to make.

One of those days

I just finished trying to rock Ben to sleep; his legs and arms twitching against me, his fingers unfurling with his nails scratching my skin, his eyes jerking open every time they start to close, and my tears dropping onto his peach fuzz head. I could hear Liam tearing apart the living room, but if I put Ben down, I set the whole putting him to sleep process back 45 minutes. I couldn't stop my tears of frustration.

Sometimes I feel as if sleep consumes my whole life. I seem to always be putting someone to sleep or more likely failing at an attempt to do so. In those rare moments, I am not trying to get someone to sleep, I am obsessing about how much sleep they have gotten, counting hours in my head, computing when they are due to go to sleep again. The only time I stop this obsession with sleep is when I am sleeping myself, but then again, with my 2 under 2, I don't get enough either, although that is a whole other post.

Ben is crying so obviously my attempt failed. Do I throw in the towel and get him and let him start a play cycle or do I lock horns with him and keep the sleep battle going? And when will I play with Liam? I haven't played with him since 8:30am today when my battle with Ben started, and it is 2pm now....Oh, and Liam barely napped today either, as he was woken by Ben's screams.

Moms seem to be judged by how much their children sleep. The questions are endless: does the baby sleep through the night yet, how long does the toddler nap, can they self-soothe. Usually, I give vague answers because in all honesty, I don't think sleeping through the night is particularly important especially since as long as I have known my husband, he still cannot "sleep through the night." I do think that sleep is important and what bothers me is the disturbingly few number of hours of sleep my kids seem to live on. If we tell people how few hours both kids sleep, we immediately get looks of judgement, implying we are failing as parents (actually all looks are directed to me as all blame always falls to the mother).

According to the "books" and our pediatrician, the 2 month old should be sleeping 16 hours a day or so and the toddler should be sleeping about 13-14 hours.

Liam typically sleeps from about 9pm until 6am, for a total of 9 hours at night. Yes, we have a bedtime routine for him. He gets a bath every night between 6pm and 6:30pm. Then he gets stories and cuddling until he is calm and sleepy. He rarely falls asleep in our arms anymore, and he will let us know when he is ready to go into his crib. Then he plays in his crib for about 2 hours every night. We have tried everything we can think of to get him to go to sleep earlier, but he won't. He wakes for the day around 6am, and this is true whether he falls asleep at 6pm, 7pm, 10pm, midnight or 2am....and yes, on various occasions, we have seen all those options happen. In addition to his 9 hours of nighttime sleep, Liam naps for an average of 60 minutes a day. In a typical week, he'll go 1-2 days without napping, another 1-2 days napping only 30 minutes, and 1-2 days napping 2 hours.

Ben sleeps maybe 13-14 hours a day, and almost all of it is at night. During the day, he starts crying after being awake for 90 minutes, but he will refuse to nurse...or pop off and cry. He naps for maybe 10 minutes and the cycle starts again. To get him to sleep for those 10 minutes, I generally have to either rock him for 45 minutes to an hour while he cries and thrashes against me the whole time (this only nearly killls me, especiallly since his sleep cycles are so short--I often sponed 4 hours a day getting hit, scratched, and head butted) or put him in a carrier and walk, bounce and sway. This means no to little interaction with Liam. The cycle will go: Ben awake and calm so I play with Liam for 15 minutes then I spend 15 minutes playing with Ben, then Ben is calm again, so I have 15 more minutes for Liam, then I spend 30 minutes changing Ben and nursing him, then the battle for sleep lasts maybe 60 minutes, then Ben sleeps for 10 minutes, and the cycle starts over. On days like today when Liam has slept 8 hours at night, was awake at 5:30am, and napped for 30 minutes, Liam does not have patience for me to deal with Ben, so while Ben screams out of exhaustion, Liam cries, keeping him awake. It becomes a vicious cycle.

I am so tired that I have lost sight of the purpose of this post. I feel like an awful mother. Neither of my kids sleep enough. I have lost my temper countless times today as it seems someone has been crying or screaming at me non-stop. Dave insists that Ben and Liam just need less sleep than other kids, but if this is true, shouldn't they be happy when they are awake? Would Liam talk more if he slept more? Would Ben cry less if he slept more? I think the answer to both those questions is yes, and the guilt starts.

I guess it is just one of those days. I am in a never-ending, losing battle to get my kids to sleep, and I am slowly losing my mind. I feel like a terrible mother for not having more patience with them and feel all alone in this world and like in every other house with a 22 month old and 2 month old, they are napping peacefully. 3 more hours until Dave gets home for the night, and I don't know that I have any more patience or energy left.

Brotherly love...and a rough adjustment for mom

Some said that having two kids under the age of two was a crazy plan. I laughed these naysayers off. The last few weeks, I am discovering the logic in their thinking. These days I nurse usually two times between midnight and 5:30am. By 5:30am, Ben is usually wide awake. If he is coorperative, I get a shower....or I have to hope Dave has enough time before work to help keep him calm. Liam wakes for the day about 6:30am, and somehow Ben always times a meltdown in the middle of me getting Liam dressed for the day. I have had a mother's helper from 9:30am until 1:30pm, but that was just a short term solution and her time with me ends in another 2 weeks. When she isn't here, there is generally some calm moments as I play with Liam while wearing Ben in a carrier. Putting Liam down for his nap is also a challenge, as Ben always times another meltdown....do you see the pattern? While Liam naps, I try to get Ben to take a nap that isn't in a carrier. Like Liam as a newborn, he refuses to nap unless he is touching me. This generally means if I eat lunch, Ben gets overtired and cries. I have a choice to either hold him and be tied to the couch or put him in a carrier again. Somehow Ben and Liam always time waking up from naps at the same time. The 4 o'clock hour is usually spent with 2 screaming kids....and me wondering why I don't have cocktails being served to me. Beginning around 5pm, Ben begins cluster nursing and we go into auto-pilot until bedtime. Murray and Sammy are generally in charge of watching Liam during this time until Dave gets home. Then 6pm brings the rush to cook and eat dinner. 7pm means bath time for Liam and he is in bed no later than 8pm. This doesn't mean my work day is over. Generally, if Ben isn't nursing between 5pm and 9pm, he is screaming. The only way he'll sleep longer than 10 minutes is in a carrier or if I am in bed next to him....so I nurse and watch TV.....and put him back in a carrier and pace around the computer while getting some internet time (I cannot stop moving or he cries--I eat all meals standing up and moving too). At 10pm, it is my bedtime....and as long as Ben can feel me touching him, he'll sleep, until 1 or 2am when the cycle starts all over again.

So were we crazy to have 2 boys in a 19 and a half month time span? The jury is out on that....What I do know is that we have given Liam and Ben the gift of a life long friend. Ben will never know life without Liam. Liam is mesmerized with Ben, and always asks about the baby before going to sleep. He wants to hug and kiss Ben, and tries to help me burp him. He makes sure his lambie gives Ben kisses, and he touches his head gently. I am pretty sure that once I survive the first two years, I'll remember those sweet moments more than anything else.