Saturday, March 28, 2015

Word this week from therapy

Mon- hi, on, me, and help

Tues- imitated /p/ many times, spontaneously said want and ready. Also said bag x2

Wed-  private SLP--> bye, moo, bee, window, and many yea's

Thurs- worked on /t/, did not say /t/-  Did say "happy"  and "I'm mad"  and said a lot of /p/

Fri- lindsey out

See--- nothing consistent.. what  to do..

Wednesday, March 25, 2015

Looking back and forward

I am not always an organized blogger.  I sit at school, or home, and write blogs in my head all the time.  It's weird sometimes.  Then I go sit and am not sure what to write.

I have been thinking how much less phased I am the second time around, although heartbroken, yes I am.  With Landon, I started googling like crazy around 16 months, and kept researching the so-called 18 month language explosion.  soon I was putting in "22 month language explosion" "not speaking at 2" "late talker." anything to get more information.  Landon talked a lot when he was little, so much so that my sister made me a mother's day gift and Landon was maybe 8 months old, and she put "Thank you, Mommy, for helping me get ahead with my speech."  I can't look at that book anymore, and if Landon takes it out, we skip that page.  I just can't.  Landon babbled at 4 months, but once it came time to actually talk, words never stuck.  They still don't.  He said dog I remember a bunch of time in a few weeks, then we went to the pet store, and I went to record him with the dogs, thinking he would say Dog like before, and in the video, he is silent.  I remember thinking, what is going on.  At 15 months, I like an idiot, put on fb, how proud I was of his speech.  He stood up in the bath tub and pronounced "Done" loud and clear, but not again for awhile.  Those were all signs that things were not sticking.  He could do the motions to the song one time, but not the next.  I had no idea why, but after 17 months, I started searching "apraxia" in with everything else.  I had him evaluated by Syracuse University, and they said since he was not "groping," no one could say apraxia.  Of course they couldn't.  he was 21 months at the time.  The only word he spoke in the eval was "no."  When he was evaluated the next month by Early Intervention, the only word he spoke was "yea."  Notice a trend??  It is still like that.  I don't get excited as much like I should.  Yesterday he said move, bag 2x (clear as day), two, and and about 7 other words.  I need to be screaming about it, but I think I am just thinking well it does not stick anyways.  One day it will, and he will know and say so much.  I am glad for one sound or word, but this has been a long process.

With Logan, I have never researched any language explosion.   I stopped looking at milestone checklists well before a year.   I don't look or am friends with anyone who has a kid around my kid, or they are hidden.  It's different.  Logi does not talk as much.  This week, he has said yum, mama, and /m/ for more. 

I need to work on celebrating each moment. I do.

I signed up for cognitive behavioral therapy that actually starts Sunday.  It is goal focused, which will help.

I have a bunch of goals.

Be more authentic
Try to find a way to communicate with my husband
Feel more comfortable sharing my kids' joys and struggle with others
Forgive myself for this, in whatever way I can
Cut myself a break too, but build strength because this journey is long and hard.

Wednesday, March 18, 2015

The post no one wants to write

Here is the honest truth.

I thought being a mom would fill every little crevice in me that was empty, would make me so happy, or fulfill all these dreams.

Truth:  It's not like that.

It may be for other moms, but it is not for me.  I really enjoy being with Logi right now.  His delays are not too noticeable; he does not hit me, he is happy.  He is less work.  Landon, right now, is so much work.  It's constant trying to keep him out of trouble, not banging the cabinet, or taking his puzzle to the hardwoods to throw it, and we expect so much from him.  We don't let him come home and just do nothing. We work him.  Weather getting better will help this substantially.

Alex and I had an argument yesterday, where he said he thought we would have kids more like our nephew, Nicky.  Honestly so did I.  I remember the first 9-10 months of Landon's life and even up till about 15 months or so, it was bliss.  oh my goodness, could I ever love a little person more, and I could not have.

Then the worries set, the work picked up, the paperwork ensued, the constant emails and checking up, checking goals, reading reports, staying on top of everyone all the time, now x2. and I realized,


It's not the happiness I thought.  I am hopeful it will be that way again.

I love those boys, thank God they are mine and not another parent who would not do all the stuff I do, but this stuff is no joke.

Tonight Landon couldn't say something and I had no idea.  I looked at him, and said "one day you will talk buddy."  He burst into huge tears, leaking out onto his cheeks, and I thought this is so so so unfair. I am lucky to have kids. I know that, but this is not fair.  It's not even a right disorder.  Who doesn't let a kid talk who wants to?

So, am I fulfilled?  No way.   Do I have purpose?  100%

Is it all laughs and easiness?  Not even close.

Why Do I keep going....

these guys...

Friday, March 13, 2015

hiding yourself and thoughts

Ok, how many of us SN moms hide ourselves?  I do sometimes.  I don't want to hear about your perfect kid mastering a 5 year old skill at 3 or whatever.  I don't care to know you potty trained your 18 month old. how awesome your mom is able to watch your kiddos for you while you work- I don't want to tell you how much  money I spend on daycare, but here is the truth:

I keep thinking about this a lot.  I am tough.  No strong person was built by living an easy life- there is just no way.  That's why I like my job, always different, always changing, new kids, new lives, and kids who don't even get speech who need me, who I help, who I teach that although their lives are tough, they are tougher.  I tell kids seriously on a weekly basis, you can make it.  You can be somebody.  I have told kids who cares if you can't learn a skill that school says you have to, most importantly you have to be kind to others, and the rest will fall into place.  I do believe that.  We have to put out there what we want to get back.  Off fb, there is time to think about life, about the meaning, about the end, about what I am trying to achieve.  One thing I have thought of lately is that parenting is about us as much as them.  I want my kids to enjoy coloring Easter eggs because I did, because it was part of my tradition; it's a way to pass on my mom.  Last year, I did it with Landon, very, very late, and there were tears, probably from both of us.  I know my nephew did it with no issue, and I thought I want that, but that's not mine, so I have to adapt.  This year, we are going to practice before we do it so we feel more confident and I will print the steps in visual pictures, so my kids know how much more we have to do.  We can do it.  I can adapt for them. On Christmas Eve, I begged Landon, please let me read you the night before Christmas, please, please (in my head i begged), and he did, and it was great and it was perfect snuggles just us.  Parenting is just as much about us.  We want those moments in our memories.  We want to enjoy this time. I do know there is a part of us also that just wants to survive it.

Wednesday, March 11, 2015

Examples of global apraxia

I have thought of two concrete examples of what global apraxia looks like.

1) Sign language-  By 18 months, I could say Landon, "say more." and he would sign more.  It would kind of be a clap, but it was clear and evident.  He had "all done" also spontaneously sometimes.  One day I asked him to say all done and he clapped for more. Hmm where did that sign go and why is it more now?  Later, I realized he can concretely hold onto one sign and then the rest are prompted.  so there was a period he signed "star" for everything, would come up sign "Star" and you would have to figure it out.  These periods last a long time.  Next came again.  It is like charades.  Oh, again, oh you want a bath, or you want the ipad, whatever, but you came to me signing again.  I will notice the signs getting blurred, like a mix of two signs, then one day, the first one is gone, unless I prompt him (visually or sometimes I just start the sign for him).  Now his sign is please.  He signs please to me for everything, then I can say, oh you wanted again, and he will change it.  Interesting though.

2) Trike-  Landon learned at 21 months to get on and off ride on toys.  I had to teach him, but he did it. A trike is a little harder with pedals and other things in the way.  He started the school year not being able to get on and off the trike in PT.  He learned it in a few months, but went over break and the couple weeks before it not working on that, so last week, the trike was out, and he went to get on it, but got on backward, then could not figure it out.  Stupid motor sequence got lost.

It is such a frustrating process because everything is so much practice.

Monday, March 9, 2015

Life with no FB

Is it weird I miss facebook?  I also realize how few true friends I have...  I am missing news about people, but without facebook, I would not know them.  People are announcing pregnancies, and other news, and without FB, and someone tell me they saw it on there, I would miss it.  When I get back on there, my plan is to make some statement about the real reason I HAD to get off there, trim my list down more to only people I feel will be supportive, and release some statement about my babies.  It's time to stop the hiding.  I think it's ridiculous to just be friends with people because I went to high school with them, so I need to really look at each person closely.  I am proud of my boys and want others to know.  I have more I could write, but got to go get my baby!

Sunday, March 8, 2015

pockets of progress

We had a family party yesterday.  our family is pretty big, with all the extended cousins, but lately, has seemed small because we do not always share with each other.  My cousin is now out of prison and I have been thinking of her a lot and seeing her as much as I can.  I am so proud of her for being honest and brave and I was in awe of her yesterday at the party, telling people where she was and why, when for years, we all pretended we didn't know there was a drug problem.  She inspired me.  My boys were very good too.  That's the progress.

It's small things, like Landon put his gloves on with no issues, he did not go to the door at all yesterday at the party wanting to go.  He tried to play with the other kids when he could, such as sliding down the stairs.  He was overall in a good mood and was friendly to everyone he knew.  Those are the moments of progress I have to hold onto.  Logan was good too. He was playing with the  little ones his age and was happy overall.  It was a great party.  I have been dreading them lately because it's been so fake, but thankfully, my strong cousin can change this for all of us, who hide our struggles because of shame and fear.

Friday, March 6, 2015

The real bad moments

There are good and bad days, happy and sad moments.  There are things I do that I am ashamed to admit, or times I feel I could have done better.  Most importantly, I wake up everyday, gives the boys kisses and cuddles and tell them I love them.  I also always talk to Landon about one day you will be able to tell me what you want to, and we both won't want to cry.  I have had times where I have screamed at him, just say it, say what you want. I don't know what you want.  He has looked at me, his little green eyes brimming with tears, and I want to cry to, and I have sometimes.  I always give him a big hug afterwards, but there are definitely moments the frustration mounts, and you wish it was just easier, and not for me, I am an adult, I know pain and struggle, and it is ok. I just want it easier for THEM.  Yesterday we were all tired and crabby.  I was very annoyed, working hard to program a new AAC program and feel way over my head.  I guess mostly I am so unsure, but everyday I have to try to do the very best I can with what I know.

Monday, March 2, 2015

The worst things to say to a special needs mom:

1) it's all in your head.  XYZ is fine, even when they are getting services prescribed by the state of new york.

2) I know a cousin, a family friend, who didn't talk to 2, 3, 4, 15, and he/she is fine today.

3)venting about their 2 year old who can only put 2 word sentences together and not 5-6 like another kiddo they saw.

4) I can't imagine how you are doing this.

5) I would not be able to do this....   so, basically, you would just pitch your kid then? really? that's such a lie. you DON'T want to do this (hey, me neither), but you would do it.

6) Wow I would never know... he looks so happy.  (didn't realize apraxia is visible??)

if you are looking for something to say:
1) notice a skill a child has picked up and say that you are proud, or see how hard they work
2) offer to babysit, come play, help
3) find the strengths in these kids
4) even better, say you would be proud for them to be yours..