Coming out with it

I started this post a few times, but lately I have to say something.  Landon is not nearly 2 and babbling with some random words; now, he is almost 3 and it is definitely easy to tell he is way behind in expressive language.  I feel like most who spend time with us see how well he understands and tries to talk, but he is so hard to understanding and there's a lot of made up words that seem to mean something, but it's hard to tell.  I have had to say things lately.  it's awful.  I saw a friend I  had not seen since Lan was 18 months a couple weeks ago.  I told her.  I had to tell nannies, even said something to someone, a teacher, the other day who never heard of it.  Oh, I had to tell the photographer who took the kids pics last weekend,... Today we have a bbq with friends. A friend of mine I went to grad school with will be there.  I will have to say apraxia and she will know what it means.  Even SLPs often don't realize that apraxia is often global and often has a sensory component, so we shall see.
Anyways, I have been in hiding,but can't be forever.  Maybe next is education.

Busy getting ready for school

Landon's preschool is free for him, since he is going as a special needs kid.  I thought I would save money, but it will be at least $450 a week for both the boys by the time this is done.

so far, this is what I have

Monday
Lori and Jim (inlaws) Am 7:15- drop him off at school at 9
Julie- one lady I hired, to pick him up at 12, feed lunch, he will nap at her house $11 an hour

Tuesday- Looking for nanny- interviewing today-
Will be at my house at 715, stay, maybe drive him, Clean, have lunch ready, etc, leave by 3.  I hope she will take like $8 an hour.

Wednesday AM- Nanny interviewing today would arrive to house by 715, stay with him, bring to school
Lori and Jim pickup noon, bring him to my house, lunch, nap, leave when we get home.

Thursday and Friday will look like Monday...

I had a nanny all set up, and now for three weeks, she has not written back :( ugh. so I had to put another ad on care.com.  I hope this works out!


Busy few days-- I have a trial nanny run Monday, tues, Landon's special ed team comes to meet him, plus all the regular therapy.  Wed, back to work..


We shall see..

sick of

I am sick of the constant whining.  I notice kids who talk don't whine that much.  I always have to reassure and explain things to Landon because he can't ask questions, so we pull up somewhere and he whines, and I have to say, we are at a new doctor to help you talk and they will be doing xyz.  plus, just around the house, he whines.  How frustrating to know exactly what you want to say and can't say a damn thing.  Today is a day I would like to cry with him because he has already cried for a half hour straight today trying to say something, I have not a clue, I got out the pecs and the talker, but he was already past that point. Then he hits and hits and hits.  I can usually redirect, but today it really hurt.  I put him in timeout, which I feel sick about, and he is just crying and crying.  I got him out and he hugged me, just leaned into me, and cried. I feel so awful.  2 weeks till school starts and hopefully more progress.  Then I will be doing this all with Logan.  Somedays life sucks.

The things you would never notice

I am a stickler for details and I see everything.  I have an amazing memory which I have always enjoyed.  I haven't read the milestone lists since Landon, yet I remember ridiculous one; by 15 months, say shh with your finger to your lips.  That is a ridiculous thing.  What if a child can't even isolate the index finger by then?!? Anyways, I have most people with kids hidden on fb and that has been amazing.  On instragram, it is much harder. I forget they are out there and then boom a picture comes up. If there is something in "quotes," I assume it is something the kid said.  Gets annoying.  Anyways, if you weren't in this world, you would not see much.

I despise the 1st bday pictures with the kids feeding themselves cake.  Neither of my boys could self feed by 1 year.

I hate the straw pictures.  Just the other day, there is a kid about the age of Logan and I know the straw wasn't the point of the picture, but that is what I saw.

I see pointing.

I see smiling on command, something Landon cannot do.

I see kids saying "ooh," but their lips are rounded.

Of course, there is walking and climbing, and maybe using a potty that people find necessary to share on social media.

i am sure I don't see the other stuff, though.  I don't post my fears or my worries or my kids' deficits, so sure others don't post theirs.

But until you are in this world, you are probably missing the details.  Good for you.

Landon's favorite word and Logan's first word

Last Friday, August 8th, I heard Logan's first word.  We were in the middle of his IFSP meeting and he came over to me, gave me a hug, and said "mama." I tried not to react like a lunatic because a lot of people were over, so I gave him a big hug and said, "you're right, mama." and I smiled of course.  The SLP said I have never heard him say that, and I said he has said it three times before like when he was eating, but not at me. She was pleased.  I have not heard it since, which is what apraxia is about, but I heard it, so I was very happy :)


Landon likes to say "yea." he is so cute when he says it.  Somedays it sounds different than other days, but anyways, if he really wants something, he will nod as he gives it to you or points, like come on say yes. so today, he handed me his ipad, and was nodding his head, saying yea, yea, yea, lol. made me laugh.

Those are my stories for today.

XO

Landon my sweetie

Landon can't talk well.  He has some words he can say well and some sounds he uses well and words tend to come and go still.  Some days he talks a lot, and other days, not so much.  That's how it works right now.  That is apraxia.  He is a happy boy.  He is a very smart boy.  One thing he is doing very well is social development.  This area is hard without speech.  Ever since he was little, everyone said wow he is so social.  They say the same thing about Logan now, even moreso than Landon, but in my head, I always think, wait till he can't talk and his peers can.  It makes it hard.  Both my boys love people and kids and being around others.  Both are always looking for attention.  Anyways, when Logi was born, Landon was just 18 months old.  He could not understand there was a baby coming, and pretty much, Aunt Loo Loo brought him home and Mommy had a baby there.  He ignored Logan in the beginning.  He could help me give him a bottle if I asked, but he just was there.  When he started moving, he became more interested, and now I can say that he loves him.  even if I ask do you love Logan, he nods yes.  He kisses him all the time and tries to engage him in play nonverbally. He always wants Logan to play chase, so he hides around the corner, comes out, tries to say something to him, and runs away.  Logan gets it, and he loves it.  When Logan catches him, Landon hugs and kisses him.  Landon is my hero.  He is so brave and he keeps trying.  He is truly the sweetest boy.

Logan's IFSP

Logan is 15 months.  He had his IFSP meeting yesterday.

He is now getting for 26 weeks/6months:

52 visits speech
40 visits PT
26 visits teacher/developmental therapist.

Many goals were set including increasing overall strength, get up from floor to a stand, climb over items in his environment, self feed all foods, use a straw and open cup, start speaking, pointing, increase core strength...

Overall, he has a good team and I am happy with what he is getting.

Onward we move....

The milestones mean more

It is true.  I am sure every parent delights over their kids first word, first steps, first everything, but not like us.  I know it can't be true.  I STILL smile inside whenever I see Landon put cheerios in his mouth.  I remember how I worked for at least 3-4 months on picking up those tiny things and coordinating getting them to his mouth.  I still know the day he did it on 11/11/12.  I was so proud.  Logan started self feeding this week also- on 8/4/14!  Logan is now a walker.  Today I picked him up from daycare and he didn't see me, but he had stood up on something and took steps to the fence and then just left the play area and walked to the door to get in.  It was so far and off he went.  i was grinning so big.  I know how hard that little low tone body is working and I am so proud.  I then went to get Landon who was doing hard work with playdoh and digging things out of them.  He gave me a big hug and sat back down to work.  HOW AMAZING IS HE!  The moments mean more, yes they do, and this momma is so proud of my two perfect little men.

I do it all

This is not to make myself feel good, or to list everything I am doing, but to have two kids getting services is exhausting.  My husband does not get it at all.  I just do it, there is no thank you, there is no questioning, or asking, or even reading their notebooks.  I do it all.  I mean, all.  I am pissed at him and just hung up the phone.  I set up a meeting with a potential nanny for the fall for Landon for MWF, to pick him up at school, take him to her house for a nap, and be picked up.  I had to get my cousin to help me last Friday so I could take Landon to the meeting-- Alex had a three day, all day long, golf tournament.  Do you think I got a thank you for watching the boys, or a you did a great job with them... ummmm, no.  It's expected.  I have to set up a secondary meeting with this lady, Julie, who gave me paperwork to fill out.  Who filled it out?  ME.  She said either Wed at 12:30 or Thurs at 8.  I already set up Logan's 6 month review-- oh wait, who called the service coordinator and two therapists for that?? me.  Who wrote out goals for Logan? me.  anyways that is Friday at 12:30 and my husband complained that it was then because he just gets off work, so I picked Thurs at 8 to meet with Julie at my house.  My husband has golf league Thursdays, which he leaves for at 1.... so it's not that 8 o'clock is not 7 hours already of golf, but he flipped out, says he will not rush back, etc.  So I just said it's thurs at 8, it's for landon, and I am getting very sick of this, and I hung up.  To be honest, that's one reason I keep working... if this doesn't work out long term with us, I need to make sure I have a plan for me. and I am telling you, being selfish and unappreciative is not making me happy.  HOW ABOUT thank you for setting this up, finding this lady, etc, and I will try my best to be home because I know it is important for Landon.

And this week alone and let's see it is TUESDAY!!!

I have:
-written two notes for the therapists in the notebook
-talked to Juliet
-talked to PT 2x
-left voicemail for craniosacral therapy
-set up private ot
-spoke to two private SLPs
-filled out paperwork for the fall
-Spoke to Landon's OT
-3-4 emails/phone calls to set up the music therapy eval, which is now next week
-spoke to Landon's support teacher for the fall, that was a long phone call.
-set up nanny apt

Give me a flippin' break!!!!!!!!!!!!!!!!!

grief

This feeling is grief.  i have been in some kind of mourning since May 2000, when my mom was diagnosed with cancer.  I did not really understand much of what was happening then, but my whole life was turned upside down and we spent 6 years living appointment to appointment, in and out of the hospital, surgeries, losing hair, seeing my mom in so much pain, etc.  Those were happy and sad years and we did the best we could.  After my mom died, I feel like I just stood in perpetual grief.  For the first few months, I know I was completely numb.  I couldn't sleep, or I slept all day, and I could not concentrate on anything.  I started to come out of that when I met Alex, but the pain was not really dealt with- how can it be? Grief is ongoing.  When I had Landon, I felt alive again.  The first year was magical, amazing, just what I thought parenthood would be.  I was pregnant with Logan before i was really worried, and now for the past two years, I teter on the edge almost everyday.  I always feel on the brink of tears, my mind does not turn off, and I am working so, so hard on everything, now times 2.  Laura is at the apraxia bootcamp and she said they discussed grief and the pain this diagnosis involves with a family and some SLPs were not aware.  It is so hard.  I wake up and pray for my kids, I go to bed and pray, and much like other parents, I just want the best for them, but this time period is not easy at all.  It is not carefree, and I am often just sitting on the edge, praying to keep it together for another day. repeat again, repeat, throw in work, trying to maintain a marriage, sleep, clean... it's impossible.  You do the best you can.  I do it all for my kids, and I want no regrets.  Grief is powerful.  I know the other side, because I saw it for a brief period in the last 14 years, and I will get there again...

delight in each step-- the phoneme /p/

P, B, M, are pretty much the first consonants, since they are formed with your lips and kids can see parents use them.  Landon had an /M/ by 4 months, /b/ was maybe 19 months, and /p/ was just recently.  His favorite thing right now is the vowel /ee/ with /p/ and /b/ so pee pee and bee bee/.  I love it. I know how hard he has worked to get here!! Go Landon!!

Why do we become moms?

I remember before i became a mom, I knew I wanted kids.  Why?? It is so much work.  Do people become moms for selfish reasons, like it will feel so good that i am wanted, someone to take care of me, someone to spend time with. Do they do it to carry on traditions/memories?  Does it unite them as a family? Do they truly enjoy kids?  A whole lot of reasons.  I know after you have one child, people think I need a second so they have buddies, or I have even heard it's been so amazing and fun and filled me up with the first, I just NEED to have it again, like a drug you need a hit on, that feeling of being loved.  Maybe that's what it is.... crazy love.  Whatever the reason, they grow and sometimes you don't keep that close relationship, no matter what, time changes everything.  so it is an in the moment kind of thing.  I try to remember that.  my kids are the other half of me, no doubt.  I would give anything for their happiness and I have said to Alex many times, I would deplete my bank account (already am for tx, daycare, etc, anyways) for them to speak. I would give up my wedding rings EASILY and not wear another one, for Landon to talk.  ANYTHING.  That's what moms do.  But it's not my life truly, it is theirs.  We are just a small part.  An important part, but not all.  Alex and I don't have the extra money now to take them lots of places.  We can't afford much right now, but what we can give is love and support and time. and I guess in the end, those are the memories I hope they remember when the next part of their lives come ....

The best one to come play/help

I posted about my dad before.  It has been a week since I saw him and no plans to see him this weekend, which I am alone all weekend, but that's ok.

On Thurs, my cousin, Ally, who is Logan's godmother, and the same age as me, texted to ask about coming Friday. Perfect, I thought. I am alone and I would love some help.  She is truly the best one with the kids.  She brings no other kids, so 100% attention is with us.  She always wants to help clean.  She does dishes, she picks up, she helps me organize.  She does it all and she is soooo good with the boys.  Even Landon, who kind of got to know her last year when he was super attached to me, was playing with her, holding her hand, just happy.  She stayed with us for four hours, dinner, bathtime, got to go to the park, which is so hard with both of them alone, impossible really.  And the other side is Ally cannot get pregnant.  She has been trying almost 3 years, just did another round of IVF, and she keeps saying all she wants is one kid.  Just one.  I looked at her yesterday and said I worry incessantly about my boys, I mean, it's constant, but I am so grateful to have them. so Incredibly grateful.  Thank you God for my cousin, Ally, and for allowing me to be a mom.