The day you know you are on a different path....

I work with many people who have young kids.  Somedays I can participate in conversations with them, but it's less so.  They are choosing daycares based on whatever: price, teachers, food, and I am thinking, ok is it out of the way for the therapists or what sensory activities are there? I am on a different path.  They talk about their kids talking back, or their child riding a bike, and I am still working on Landon saying hi and Logan motor planning how to wave.  I am on a different path.  I will never know what it's like for a child to "just pick up a skill."  I will never hear my children speak without a huge amount of therapy.  I am on a different path.

Somedays the reminders are more obvious than others.


May our path lead to a green meadow with lots of sunshine, life, and most importantly, self worth in what we have accomplished.

I keep forgetting...

That the speech is not going to be crystal clear as it comes in.  Landon has been talking more.  The words are not always clear.  There are no final consonants used and the prosody is off, making a lot of the words sound the same, even if the stress is supposed to be somewhere else. I think that makes sense.
Today he said "no" a few times and it's not a super loud sound and the /n/ is not as strong sounding in that makes sense.  He is doing more jargon, which I think is good, because he is trying to say something and he is working on getting it out.  It is a stage he had not been to before.

and then I read a study on using anti bacterial soap causing some neurological disorders and I feel like I can't win.  I definitely  used that stuff non stop with my kiddos when I was pregnant.  ugh. I work in a school.  Basically, the environment is being linked to a lot of this... I don't know.  It is a scary world in which to be a parent!


Night night

What goes up, must come down

This is the ride I am on, but it is sometimes affecting me less and less, because I know my kids, but anyways, both had rough days.

Landon's sheet actually circled "tough day" for behavior, said he cried throughout morning, refused to do yoga, did not eat, and they actually took his temp.  Poor guy.  I don't know what is up, but that is the journey.

Then, Logan had two sessions today.  Positives:  He drank from a straw independently for the first time! He is babbling using many sounds.  Negatives:  Today I was called and although I already knew, the words "global apraxia" were said to me.  I knew this.  I said it since about 8-9 months.  I knew this. It hurts of course.  Logan has a totally different personality than Landon, which they said hurts him.  Landon was frustrated(he is still) and he was driven.  He has a big personality.  Logan is so laid back.  He doesn't care.  The teacher said his progress is slow and he is not displaying all his skills because he spends the day climbing the slide.  I have to work with Logi more for sure.

Anyways, yes, two kids with global apraxia, genetics.  Maybe less my fault somehow.  Two kids in Early Intervention before one year old.  That's me.  Will I ever stop fighting for either of them?  Not while I am living.

Upward and onward...hoping tomorrow is better!!

Landon's first phrase!!!!!

At school today, landon said "roll the ball" when given three choices between movement activities, then he got up and ran right to what he had picked.

So, so happy and proud of him!!

Hopefully more and more people can see what I know is true, how smart he is, and how much he has in that brain of his!!

The day that God blessed me

God is great.  He is all powerful.  He chooses people for situations and tasks and He does know all.  I believe that.

I hear a lot "landon is so lucky to have you."  "He has the best mom he could ever have."  "That's why you are a speech pathologist."

People say those things without thinking and they do mean well.  If Landon was born on the west side where I work, he would not have moved along at all.  He would not be half the child he is at all.  I know that.  I am so glad that God entrusted him to me, and me to him.  He is truly like the half to my soul because I understand him so well.  But the people on the west side would not be worried, they would not feel sick all the time, and they would not be involved in every part of his care/treatment.  God has a reason for this.

I want to be unstuck.  That is what I want.  I feel like Landon and I are on a mouse trap or something and we can't move ahead.  Hell, even if we wanted to find our arms, or our legs, we can't because silly motor planning makes this too difficult.  We can't show all we know and most people don't take the time to find out from him.

Then I met a friend named Laura.  She gets it.  We do a lot of "me too" and "I know what you mean."

That is God saying.. i know you are hurting and alone, so here is a friend to get you through this.

That is how God works.  He has always saved me when I needed it and he will get me and Landon out of this, to a place where we can be all we are, and we can feel happy because others will notice and realize.  We will get there.

Songs of sorrow

When I started this blog, my friend, Laura, said songs of sorrow are ok too, that they are realistic and will be good to look back on.  The songs of sorrow continue.  It's horrible, I know.  I have two adorable, happy, and loving little boys, and yet my heart aches to hear words! Consistent words! that are recognizable to others beyond me.  I said to my brother today that i could give my left arm for that and he said to be patient, but I would.  I can't think of anything right now that I would not give for either, especially Landon, who has been working so hard, to learn to talk. I would give anything.  It's a desperate plea. It's the prayer I say all day long.  It's the ache in my heart.  I can't escape it.  It is an all day thing.  It's I hear someone speaking at the park, the restaurant, even at school, even when they are poor, or sit in front of the tv; they talk.  I immediately think not fair.  I see someone smoking when they are pregnant and as horrible as it is, my first though is, bet their kid will talk.  I see someone eating a hotdog or whatever, and think, they will speak.  It is just not fair.  I need to pick myself up, because already I don't want to do Christmas this year at all.  Hoping soon there is a miracle.  Please God, please, please, please, let my boys speak.  Whatever you want, I will do, whatever.

That's the prayer everyday.

:(


To God be all the Glory. Amen.

Acceptance

How do you get to the point that this is all ok?  That you accept this?  That you realize it is not all your fault?  I am not there yet, really not even close.  I still think of stupid things like taking that Aleve once before I knew I was pregnant, or giving him a medication or something.
It is hard.

But I read on the apraxia kids fb page that NT parents don't sit around and think boy I should not have done this or that, so why should we? Well, we do because society says something is wrong with our kids.  To society, our kids don't stack up.

It is very hard.

How do I cope?
and here is my advice:

(I think in the future my advice may change)

1) I try to only compare to us.  So I look at Logan a month ago and then now, not look at another 17 month old, because that hurts.

2) I hide most friends with kids on fb and I block them on instagram.  I can't see it, read it, watch it. I cannot

3) I rarely cry.  Why? because if I start, it would be everyday.  I typically just feel nauseous, worried, or sad, but I don't let it out.

4) Do what works for you  Yes Landon will hit me, no I don't put him in timeout everytime. It does not work for me, maybe it does for you.  I try to withhold the judgment on myself that I have to do xyz

5) Look for the positives. When you are a mom like me, an email saying Landon tried to talk, or colored for 1 minute, or tried to engage a peer, that is EVERYTHING to us. It can be a high that I need that will last as long as I try to keep it. It's the old emails I read when the days are tough.  Same way those comments build us up, we get knocked down by.. he can't do  or he won't do. Those ones kill. They kill so badly. I try to take them with a grain of salt.

6) and most important, we know our kids the best and we are the advocates.  There is no one going to come in and say something about my kids without consulting me. No one.  I make all the decisions. I read the goals. I ok everything. I like to stay in charge and I have to advocate.  All day long, they are on my mind and I do what I can each day.

Got to go, but those are them for now.

Made it a month already

Landon has been in school a month since today. Phew.  Each day I am surprised we make it.  I have more severe kids on my caseload this year, my own two kids receiving a total of 9 services together, and two nannies plus my in laws helping out.  I am always shocked we make it through!!
Throw in a lot of Jewish holidays Logan has been closed for and having an intern and stress has been high.  Luckily, only four more jewish Holidays left, and hopefully not much more time for me to take off.  I do enjoy being with my kids, but I hate missing the kids at work too, and I would like to try to keep some days just in case I need them when they are actually sick!  It is a tough trade off.

Bonus is I am off on Monday for Columbus day and a day for Jewish holiday next week = 3 days of work next week. :)

Landon loves school and hopefully Logan will be there next year too.  There is a toddler program for kiddos getting services.

I had more to write, but I am tired.  I put the tv on for Landon, and I have work to do!!

Kim :)

implementation meeting

I will blog more on the meeting I had with all people who work with Landon (there were about 10 of us there), but the body of the entire write up has something starred.  It says:

**Landon needs to be able to build trust in others before attempting something he is unsure of.  Motor planning appears to be a big area of concern as it is affecting not only motor skills, but speech too.  He needs repetition and wait time to process the information and allow himself time to motor plan what is being asked of him**


I guess that does sum it up, huh?

You suck, apraxia!!!

Tolerance level

Having a child who requires any extra support takes a big, big toll on a marriage.  My husband is a fantastic dad.  He is great with the kids and he loves them unconditionally; unfortunately, his fuse is short and his ability to connect with others on an emotional level is pretty much nonexistent.  He doesn't have the ability to have deep conversations and his temper is short lately.  I know he knows why Landon gets frustrated and hits or throws a temper tantrum, but his reaction is never positive.  I try to model a nice way to go about it, but it falls on deaf ears.  I guess before you get married, you kind of assume things will just be ok.  Ii mean, what huge thing are you going to encounter early on in marriage?  Having kids changes most marriages, and I know many people I work with who are not happy in their marriages and have young kids, but any extra support needed, working hard on a variety of issues that others take for granted, weighs on you.  I think in a perfect marriage, each person would attempt to shoulder a half of it.  In my marriage, I would say I shoulder 90%, and most of it is the emotional piece.  It is exhausting.  It is isolating.  It can just build up.  I actually like the times I am home alone with both my kids and I don't have my husband over my back judging me on how I handled something.  Maybe he feels the same.  I like to just be with them and be us.  I keep praying for things to be clearer, easier, and for there to be a set path.

My husband doesn't read this, so that's that.  He doesn't ask many questions.  I know he is hurting, but he does not say anything.  It is lonely.

expectations of society vs. what actually matters

I have been thinking about this as the holiday season starts approaching.  as someone with way too much on my plate as it is, I have yet to decorate for fall. I did not put too much out last year because it would just be broken, and same goes for this year.  I will get some things out soon and maybe even today, but minimally because I live with two monsters :)

I am not hyping up Halloween or even Christmas.  It's sad when my kids are unable to communicate and society has a great idea that all these kids could say "Trick or Treat" or even care about candy.  Mine don't/can't.  Landon has never eaten candy and I don't expect to start right now.  We plan to hand out candy at home, do minimal costumes, and go to a few houses nearby.  No huge deal, and I am glad school doesn't celebrate either.  That makes it nice without feeling like I have to go all out for a costume my kids may not wear, and it's money I don't have.

Thanksgiving is easier and that's just food and family.

Christmas hopefully is low key and a few gifts for the kids.  They have so much stuff already, but the time together will be nice.


Anyways, someone had posted about sensory friendly costumes on my apraxia page and a few ppl had said it really doesn't matter too much, and you know what, those people are right.  Feeling loved, happy, and secure is what matters.  Many of us have no extra money for these things, and our kids don't know it and don't actually care either.

Rant over:)

Happy Fall!!

Landon's email from 10/3/14

Hello,

Here is a little bit of what Landon's day was like at BMW. He is coming happily into classroom every day! He gets his favorite book for starts. We are doing "first wash hands, then book".  Then he is so ready to play! When reading, we are working on turning the pages instead of banging the book. He rolled some chalk across black paper, and w/ some hand-over-hand he did make a few lines on the paper. He used the all-done thing b/c wasn't too interested in the chalk. We played connect four by inserting the pieces, and when he was all done, he cleaned up the pieces. He enjoyed taking turns with this game.

Landon had a short but happy time of painting today! With hand-over help, we sang a song while moving a sponge brush over the paper. There was bright colored paint out and it was fun to see the colors appear w/ every beat we sang. Since Landon likes to bang his hand on the table, we tried banging our hands on the painted paper, and he was not upset to get paint on his hands. He washed up and moved on to another activity.

The yellow room has had a puppet theater set up for last few days. Today, Landon became very engaged in puppet play with Elise. He liked being the audience, and while Elise was singing Old McDonald w/ puppets, she gave Landon choices for which animal next. He also came behind the scenes at one point to pat her on the head for a thankyou. He clapped after every animal.

Yesterday Landon started playing a game in the gross motor room, where he went behind me and came around as if to surprise me. I gave him big reaction, and he was thrilled. He kept this up for long time, and it was so funny for all of us! He really laughed very hard. Today, he continued this game on the playground, but with a peer! Andrew was swinging and Landon would sneak up on him from behind. They were both engaged in this, until Julie came, and she got to see it for a moment from the gate.

Yesterday we also followed up on our field trip by making applesauce in the classroom. Landon helped wash some apples by moving them from bowl to bowl. We again did big/small apples for him to choose from.

Today Elise and I had a few kids in the Big Room, and we put out a large bean bag for jumping on. Landon enjoyed jumping into this very much. He was able to jump off a short height with two of us holding his hands. Again, great turn taking w/ peers. For snack there were canned pears out with forks to use, but Landon didn't want to try. I think maybe he didn't want to eat the pears. He did eat goldfish and drink lots of juice. He loves to pour and will ask to pour more before his cup is empty. We are working on having him ask for more when he wants, instead of making noise and closing eyes.

If the class snack is same or similar to what you've sent, we've been having Landon eat the class snack. He's been eating well and is doing great job now telling when he's all done! Today he pointed to the trash can, telling me he was all ready to clean up!

Tanya

How nice the aide sent this to me at 7pm at night on her own time and Landon must be loved already!

Landon, my superstar

Landon went on a field trip to the apple farm today and here is the note from the aide who was with him.  I was sent an email:

 

Landon had a great time on our field trip to Apple Farm today. He waited patiently w/ kids for the big tractor to come, entertaining himself by exploring the stones on the ground and the ropes, etc. The first few minutes on the tractor he wasn't quite sure what to think, but soon became interested in watching the driver (we sat in the middle of the wagon, facing forward). When we were picking apples, he had a blast putting them into the bag! He laughed very hard (so funny!) every time he placed an apple in the bag. He picked the apples off the tree w/ some hand-over hand help to grasp (the apples were pretty wet/slippery), and filled his bag. When his was full, he helped me fill my larger bag. I have lots of apples for my family, b/c he just enjoyed this so much! He liked the sound they made kerplunking into the crinkly bag, but he also was watching where each apple fell onto another, etc. We did Big & Small apples. There was some singing while waiting to go back, but also some playing and walking around. He really liked the stony path between the apples. The kids all had a snack (goldfish & graham crackers), then got to play a few minutes before we left the farm. He walked through the apple barn with me, and he liked the big orange pumpkins but did not like the ugly bumply gourds! Good observation, Landon! :) Fell asleep for the ride back to school, but woke up in van happy upon our return.

So proud in general of this little man.  I have more to update, but he is working hard, so hard.  So many other kids, things come so easy to.  He works 10x as hard to get the same skill.  What an inspiration and it will serve him well in the future, because truly,  nothing worthwhile comes easy to anyone.

Love my boys!