When it is not just a home

We have to move.  I have been sad thinking about this, and my eyes have welled up in tears often.  I don't want to move.  I love my house, I love my neighborhood, I love my city.  I know I am not abandoning the city by moving to the suburbs, but I love to say that I live in city, that I can walk everywhere, that I feel very safe here, etc.  I love the way our neighborhood is always out and about, seeing everyone, that we look out for each other, that we have weekly neighborhood meetings.  I love all of that.  i am not a suburbs girl.  I know that I have to move before the kids start school, because the behaviors have gotten bad in our schools, and because my kids would not get the services that they could get elsewhere.  I do know that.  Of course, I had a dream to go to private schools, and that's not it now.  This is a hard time for me.  I hate change.  i hate to uproot the kids.  Where else can we walk to church, the park, to get ice cream, the library, the store, to see family, etc?  I am praying God will help me through this.... deep breath and gotta do what is best for the boys.

Appreciation

I am a person who needs appreciation, who thrives on it, be it seeing something, noticing, saying or doing something that says, "hey, i see what you do and who you are."  I have been in counseling since March.  I feel like a lot of my own grief is due to the fact that I am not raising typical little boys, and this is not a typical way to start out being a mom.  One day i hope they know I would never change them for anything, and I am so proud of who they are, no matter.  One day, I do think they will be able to say "thank you mom" for everything I have given up and done for them.  I don't need them to notice though.  I will never stop doing everything for my boys, and i remember it's not their fault that they are here, struggling; they did not ask to be born, and i am doing my best to protect them from pain and to feel some success.  I think that is true of any parent.  I pray that one day they are happy they are on this earth, and i don't want them to feel like it was always so much pain.  I remember my mom wrote that in her journal to me, saying I didn't want your childhood to be painful like mine.  I remember no pain in my childhood and it was perfect to me, even where maybe as parents, my parents thought it needed or lacked something.  Not to me.  My boys are loved and I know they know that.  Landon waking up and smiling a huge smile because I am waiting at his gate and throwing himself on me is all I need.  Logi smiling that cheesy grin, running at me, and patting my back, is my everything.  My boys are my every breath.  I am so heartbroken that they can't speak.  It's hard to put into words.  It kills me.  But what choice is there?  the only choice is to sacrifice to get them help and pray.  and to never, ever give up.  And I do that, knowing and believing that God has a plan, and has this all figured out for me.  I believe that somewhere.  Right now, I am not angry at God.  I do get frustrated at Him for giving this to me.  I am not a person who wants to be in this.  I would have like a 10 year reprieve from pain, but i am strong, because my mom made sure I was that way, and I can do it.  I really can do.

The lack of emotional support and appreciation from my husband is what really hurts. There is so little, and I don't think he gets it.  I have talked about it with him so many times.  I don't think it is that he does not want to get it; I just think he honestly cannot and just isn't invested enough to get help to figure out how he can.  He brushes things off without any thoughts.  He will say things and it does not occur to him, that they hurt, and he just continues on.  It's so hard for me to understand.  It is draining.  I am in a hard place right now with this.  I am in individual counseling, so that is good for me, and I can figure out a plan if I need to.

STUCK

We read a lot of books about stuck.  One Duck Stuck is one of Landon's favorites and then Sheep in a Jeep, where they get stuck again.  We are stuck too.

I think it's just part of this apraxia, but the progress moves so slowly, that you work on the same things over and over and over. 

When Landon was 2, I was working on blowing out candles.  He will be 4, and he can't do it yet.  He loved Mickey Mouse at 2- that was the theme to his party.  He still loves mickey.  Is that bad? I don't know. 

He knew all his shapes at 2, and now he knows his numbers.  Colors are still hard for him.  Concrete things are much easier for him.. 

He was only finger feeding at 2, and now he can use his spoon well.

He was a good walker at 2, but now he can jump and he can run.

He didn't care too much about Logi before he could move around, and now he gives Logi hugs and hits too lol all the time.

He could sign more and all done, then but now at 4, has about 10 signs total with prompting.

He just picked up the /p/ sound at 2, and now can combine /p/ with many vowels.


I guess we have to look at it this way- the progress is slow.  It is very slow.  It is so hard to be a part of.  The doctor said Thurs, the kids have to keep working and the threshold will build and it will all be figured out.

Unfortunately Landon is so frustrated and aware, so i am working hard on that part.


Logi just turned 2 and he is making good progress in everything but language, so we will wait and see.


Happy weekend....

2 months until 4

Today is the 23rd.  I do dread these days each month.  Logan is now 2-3 and Landon is now 3-10.  It is a quiet home.  There are laughs and giggles, and also tears and frustration.  There are so many things on the to do list that where do you start.  I have not a clue.  Today I was out trying to look for good places for Landon to go for the year after next, the year he is supposed to go to K.  I am applying for OPWDD support, which could help pay for some things, if he was approved.  So most of the morning was phone calls again.. and still have to work more on the IPAD and get Logi's picture book done.  I am so overwhelmed.  Each day, I wake up and think today with Logi- I have to work on the straw, the spoon, pointing, understanding language, following directions, play skills, core strength, etc etc
With Landon, I am working on jumping off an item, imitation of actions, imitation of speech, signs, the fork, the ipad, taking his shoes off, his shirt off, play skills, confidence, trying new things, body awareness, potty training.
It goes on and on.  It is so all encompassing.

Today we learned there is more testing to do.  I have to do more testing just to do it, so we will see.

I also learned that I could get meds for Landon with no big issue.  I am not a big fan of that, but I could get them.  Crazy.


To do this x2 is so hard.  If Logan was talking now,  I would be worried less, but my heart would be broken for Landon, so the boys do this together. We do this together.

I am exhausted.

Inclusion

Inclusion is a fantastic thing.  It includes everyone and all children are exposed to kids who learn differently.  I don't know but it bothers me so much when I am the reason your child checks the box for being inclusive, or you can say that you child has a friend who does not talk, or has trouble with using utensils, or whatever.  I don't know if I just sit here in denial, but I hate it.  I just hate it.  To me, Landon and Logan are regular little boys.  They have needs, but we don't want to be in your kids' class, so you feel good about yourself for being inclusive.  That is probably not what those parents mean, but still.  It's different when you are on the other side and you want your child to just fit in, not be singled out. 

The other side is so hard.  We want you parents with typical kids with tears hidden behind our sunglasses.  We are so envious that you are not worried about finding a school that will take your child.  We lose sleep at night thinking about how our child will ever make it out there without us. 

I had a dream that Landon was talking. It was beautiful.  I ache so badly for that.  It just hurts. I want nothing more than for him to speak.  Once he can speak, I can worry less, I know he can at least communicate his needs, be able to tell me something that happened, and not be seen for less intelligent than he is.

I think so far in advance and am so stressed thinking about moving, finding a good program for Landon, thinking should be go to K or not.

It's not fair that parents of typical kids can keep their kids back no issue.  We have to fight for it.  It makes no sense.  The whole process here is ridiculous.  Alex won't leave New York, so we are stuck.

PLEASE-----Speech progress!!!!!!! Please!!!!!!!!!!!!!!!!

hard work

So many people do not get this, not at all.  They look on with pity or are sad.  Yes, this is all unfair and everything, but you do realize I have two sweet boys.  Landon is so caring and concerned and hysterical and smart.  Logan is so observant and wants to do everything on his own, he is so funny, and he is protective.  Landon tripped yesterday and first I was holding him, and he was calming down, and logi was watching, but then as Landon usually does when something bad happens to him, he hit me, only one time, and Logi runs over and hits Landon in the head.  It made me lol.  He was so mad at him for hitting me.  The boys are so good.

Anyways, my dad typically has no idea.  So he says to me the other day that I will have to start working very hard with the boys this summer.  WHAT?!? I said Dad, I work hard with them everyday.  I have been for years.  He does not get it.  I know he means potty training, which we are doing, but still. ugh

Where will this journey go?

I still struggle with guilt, that I did something to cause this, that I did not protect my kids.  I don't think looking back I ever did anything wrong, but I don't know.  It's not fair.  I am proud of myself.  I see myself as rising above, as working very, very hard.  I don't think most mothers could do this as well as me.  I am being honest.  In our own bubble, we are so happy here.  We are thrilled when Landon signs open.  We are so happy when Logi babbles.  I can't even explain.  It is just pride.  Then we have to go out and we see that our kids are not like the other kids.  And that part hurts a lot.  It's easier to be inside, but not fair or right. 

When will Landon start talking?  I don't know.

When will Logan talk?  I don't know


When will Landon be able to try something new without feeling so nervous?  I don't know.

When will Logan be able to use a spoon or not throw his food?  I don't know.


When will Landon be able to draw something and tell me what it is?  I don't know

When will Logan drink from a straw cup?  I don't know.


So many I don't knows.  So many this is so not fair.


Yet we have to keep going and we will.


We have to have faith.