Thursday, January 29, 2015

Two different sides of the same coin

When Landon was 18 months, and I was sure he had apraxia, everyone in my family, said no way.  Now, they know.  Same with Logan.  I have  been hearing he is so xyz or not at all, or when my sister spent time with him in Oct, he is not the same, but now they see, yes he is.  They are different though.  Personalities are different, motivation is different, and therefore I am sure, their progress will be different.  Logan also has no lax in services, but Landon had me 1:1 for longer. 

Logan is further behind than Landon with everything speech.  He can't point or identify objects yet.  He can't respond to questions the same way Landon could.  He has just a few consonants.  He is a lot less cautious, he tries more things, and he imitates actions better.  He is also stronger. 

Landon is more determined I think.  I think Landon is probably a gifted iq.  Landon is more aware.  Logan is more social. 

They are both happy, give the best kisses, both have super silly personalities, the best laugh, and are loved.

God will provide enough for us to move through this. 

Wednesday, January 28, 2015

Been forever

Sometimes I think of what it would be like to start therapy at 3.  Maybe it would be more guilt ridden, thinking i did not know do more earlier, or maybe it would be less redundant.  Landon has a winged scapula, his hips, legs, trunk, etc, are not all aligned the way they should be.  This is due to the hypotonia and his body trying to compensate.  He is quite smart trying to figure out how to make it work.  Sometimes I think wow he ran, or jumped, or kicked, and it is so much harder for his body than another kid, and yet there he goes.  Anyways, a lot of the therapy is laying in extension swings, working prone in a bolster, wheelbarrow walking, work on the therapy ball, and that's all great, but I have been doing that kind of work for almost 2 years.  He has come a long way with wheelbarrow, with less support now, and can get into 3 yoga positions even (thank you low tone body ;)), but sometimes, it's just hard to hear. I just thinking man we have been doing this for 2 years at least and still are not where I want to be.  I know it's a process, but it's exhausting.  He has been so sick lately and then not speaking as much, and I hate that.  2 weeks ago, he was doing great.  This process is lonely, heartbreaking, joyful, and hard work.  Being a mom is such hard work, but a mom to boys with "needs" is much harder.  A lot of people could not handle it.  I know that.  Logi is feeling better and doing great.  He has been making good progress the last week or so since he got better.  Hopefully Landon's turn for feeling better soon.


Friday, January 23, 2015

a hard part for me

Landon's school staff seems to LOVE him.  The email last week said when he comes in, they fight over who will get to play with him first, since he is a favorite.  He loves all of them.  That is such a good feeling.  Words can't describe that to you.

I have had to rely on a lot of help to get Landon to and from his preschool.  I have two nannies hired and then my in laws.  Somedays I wonder how it all goes together. Previous to this, we did not see or spend a great deal of time with my in laws.  I actually really never liked how they interacted with Landon.  I remember once he was sick, throwing up, and they HAD to come over to visit, had to.  He was in my arms and was about 11 months old.  They snatched him from my arms to take a picture with him, and he flipped out.  After that, for about the next 5 months, whenever they entered our house, he would start crying.  It was interested, and even then, I knew Landon could read people very well.  They are with him M Th Friday am from 715-845.  It's so hard for me to leave sometimes.  Weird I know.  I want him challenged more.  I know grandparents are supposed to just make things easy for kids, but it is hard.  It's interesting because he loves them now.  He never did, and now he does. Landon has a knack for loving others and making others feel comfortable with him.  One email I got last week from his classroom staff said Landon will go far in life, and others will miss out if they don't take the time with him.  He can be easily dismissed, especially with the lack of speech.  Here was the email: " Landon has that glow that will take him far in life- while others may have to wait a little bit to get to know him, Landon will accept that and forge ahead. "

I am humbled by my baby's hard work and dedication.  He is truly my hero.

Wednesday, January 21, 2015

The what ifs

On the bad days, when you hear about someone else's 3 year old taking off, or your kid has pneumonia, or you got hit 15 times ina  hour because you don't know what he wants, you think to yourself.... IS THIS IT?

It's scary.  I can usually get by with his sweet hugs, kisses, love for books, and happy attitude, and just remind myself, I am doing all I  can do, and he will work in his own time. 

Then the other part thinks Am I doing enough?  What else could I possibly do?  Why can't he make faster progress? Why do I have two kids with this?

The waiting is hard. It's hard to be patient when all you want is progress.  All you want are words.  It's hard to go to work everyday and just pray that your baby is working hard at school.  This journey is so so so hard. Then I look at my students here.  They are poor and they make progress.  Difference is they don't have a neurological condition but still, they move along.  Landon has to move along.  He is the smartest little boy I know. He just has to.

Somedays the what ifs take over and you feel totally blindsided by the sadness.  Undearneath all this, there is a sadness.  Our time will come, but for now, we hang on everyday, just doing the best we can.

Monday, January 19, 2015

Maybe you LEARN to look for the positives

Logi had his OT eval today.  He did not qualify the last time, and I had to wait a certain number of months, and I had to fight to get this eval today, and guess what, he did qualify.  now, Logi is a baby.  He does not know that he is taking a test and I have learned to remember that.  The OT asks him to do something and he either does it or not.  Some things he did last time, he refused this time.  Does the score reflect him all the time? No way.  It gets him some help which will be good for strengthening those fingers.  He has a lot of higher up skills but missing those finger skills.  That is fine.  He got a low score. Boo.  It will be written up. Boo.  He was busy dancing for the OT, hiding behind the curtain and jumping out, and giving Mommy kisses.  And he has pneumonia and the double ear infection.  so for all that, I was impressed by his happy disposition and charming self.  and that my friends, is finding the positive.  We all sick here, and it has been the longest 3 day weekend ever, but we love each other, and we find the happiness in that.

More to come... more services for my  bear, but more progress hopefully.  Now Landon is sick and he will accept any prayers.

Sunday, January 11, 2015

You have nothing to feel guilty about

That's what my card @ the psychic said on Saturday night.  I went with a group of 6, including my sister.  We had to choose a card at the beginning of the message circle, which would be a message from the other side.  That's all my card said.  That was definitely ironic, and I do feel guilty sometimes, and sometimes not.  Like I have written before, NT parents are not walking around, regretting something silly they did in pregnancy, so why would I?  I did the best I could each day and continue, given my research on everything, and the way I would never want to hurt my kids in any way.  Other things the psychic said were that I have a friend out west! Laura! and that I am planning a trip.  She said it was long overdue and that things won't be done exactly how I want at home, but to let it go.  She also said I try to accomplish something and work hard, and then when I finish it, I have to move on quickly to something else.  I thought maybe she meant my kids.  That is definitely the journey of moms like us.  It feels more like a check off the list and a sigh of relief, then quickly let's move on to the next skill.  Now, we are so far behind that it's not one simple skill, like self feeding, or pulling to stand, like it used to be. Now, it is the hardest skill of all: speech.

Lately I waver.  I know that my God is not judging my kids, nor does he necessarily care which care they start to talk.  He is all loving, and I try to remember that, and I do try to remember that kids should be kids, and not held to some standards THEN the other more logical, educator side, knows how much is asked of kids in primary grades these days, and feels so much pressure to try to get close to that. Just try.  Another weird thing that gets me through the day, is say you have a 20 year, and he is 2 years behind on speech, well, there would be no difference right? an 18 and a 20 year old's speech would be the same.  This is the tough part. even a 2 and a 4 year old have huge differences in speech, play, self help, and that is where I feel stuck.  They start to look behind.  Even my insanely advanced, sweet nephew notices, I think, in his own way.  He asked Landon for a high five the other day; Landon gave him one, and he proclaimed "He did it!"  Maybe he sees there are things Landon can't do, or maybe he just loves his cousin so much, he was happy to get a high five.  I don't know.  It's a hard balance.

Keep the prayers up for my babies is what I mostly do.

XO all

Friday, January 9, 2015

How can you find a special needs mom?

For me,  I can spot them more easily now.  On Fb, I figure it out because they are the only people not posting brag videos or posts constantly, and when we hit a milestone, or learn a new skill, we never post it, because it may be a year after your child hits it.  So, we don't share most of that publicly.  I have had two old work friends either recently give birth to a child with special needs, or catch up with another, to find out her almost two year old gets a variety of services and is globally delayed.  Both have typical first children.  I hate to throw pity in here, but somehow, some reason, God chose me to have both my children getting services.  I hate that.  That's so not fair.  one is enough.  I feel less alone when i find others, and I find they are experiencing the myriad of feelings I do:  we are amazed by the hard work and progress, but of course, worried sick.  I am getting closer to posting more on my own fb, but I would like to weed through and only post to those who I feel would be supportive.  I am getting there.

And my other random thought is two things I won't miss when we are past these apraxia days:
1) being my kids' (both as Logan is frustrated and hitting now too) punching bag
2) whining

Am I the only mom who does the sign of the cross on herself multiple times a day asking for God's grace and patience? Lol.  I do and I just keep PRAYING.