Sunday, September 21, 2014

Keep it in perspective

I am a member of the delayed darlings group on babycenter.  I don't post much, but there are others with kids with apraxia or hypotonia, etc, on there, and I feel like I can add something as an SLP sometimes, too, so I check it every few days.  I feel alone in this journey, but I am trying to keep it in perspective.  A lady the other day posted about her 3.5 year old son.  He just learned to crawl.  He cannot chew and he doesn't eat any table food.  I think he still gets a bottle.  She was pleased that he started to realize where to put his hand in the hole of his shirt.  Wow.  Then my sister was on the phone with me the other day and a nurse or someone buzzed to me talk to her (she is the NP) and there was a patient getting teeth extracted before radiation...Kristin said age 34.  So while I have my ups and down and truly do feel rather alone, I am so blessed for the boys I have and the life I get to live each day.

Saturday, September 20, 2014

The birthdays

Landon is almost 3!! Tuesday! It's hard to gauge his total understanding of this since he cannot communicate it to me, but he noticed the decorations up this morning, and we have been singing happy bday and talking about how he will be 3 soon for awhile.  We have also been saying today there is a party, etc.  Birthdays can be hard.  When Landon was turning 1, I was so nervous/upset that he could not self feed.  It was hard to watch at the 1st bday.  The 2nd bday, I knew he should be able to start to blow out a candle and he couldn't.  Guess what- he still can't, but I worry less about that now.  This year, it's talking.  I just want him to talk.  I don't even if he can never blow out a stupid candle- that does not matter.  I just want him to be able to speak whatever he wants to say.  It's always waiting for thenext thing...this thing is the biggest thing though.  Speech is the key to everything.

But he is making lots of improvements in many ways and we keep praying.

and no matter what, I would never want another little boy.  I love my Landon.

Happy 3rd baby boy.

Thursday, September 18, 2014

Week two at school and update on Logan

First, I have been thinking of this statement all the time:  HOW DID I EVEN GET HERE?!? It goes from worrying that my baby isn't crawling to being in a special needs school.  I sit and I have no idea how I have even got here, or why this is happening, BUT I have to hold my head up high, do what is best for my baby, and be strong.  I have to be strong, stronger than I feel.

Week two is better in that Landon is running into the school and the teachers say he LOVES school (he is his mother's son after all) and he seems happy throughout the day.  He is struggling in play- it is mostly imaginative, creative, pretend type play, and he doesn't have the words or motor skills to engage in that for long, but they brought in some familiar toys and are setting up things that he likes and then he doesn't try to leave the classroom. He loves to read and he has a few favorite books now.  There is a visual schedule for him for transitions and that helps.  The SLP is using LAMP (AAC app) with him and she said on Tues, the first time she introduced it, he made a two word phrase appropriately and independently and that he is very smart.  That made me happy.  He even used it today to say he was finished with an activity independently, which before would have been a tantrum.

Cons: No communication at all from OT/PT yet.  I have sent emails, written in the notebook, and nothing.  How do I get them to respond?  I want to know what everyone is doing with him and communication hasn't been that good.  Then I  have 3 different ppl pick him up on various days and I feel out of the loop, but overall, I am proud of Landon.

Logan just turned 17 words:  He has some consonants in babble now, yes babble, and yes reduplicated- b, m, n, w, and h.  He has 2 vowels.  He cannot point yet or use a straw.  He is doing much better with motor skills and uses kiniesio tape to support his trunk and core.  He is tired with adjusting 2 one nap and daycare, but he is also working very hard....

That's it for now...

Thursday, September 11, 2014

Landon in school

Landon started school.  honestly, where do I think is best with him is home with me.  I do believe that.  He is tired there a lot and there are a lot of demands on him.  Today his sheet said he is starting to smack the teacher.  I guess it hurts to see things like that on his paper.  Maybe I would rather not know. Yesterday said he interacted with peers 2x, today said also that he was interested in sand but did not engage in it.  I get that it is day 4, and not sure what I expect, but I guess, it is hard.  Mainly, it is really, really hard to get to that point of acceptance knowing this is what he needs and it is not going to be easy.  I keep saying this is what he needs, but I can still hate, cry, get mad, and feel totally cheated out of.  I was reading an old journal entry shortly after my mom died and something bad had happened and I was so angry at her that she did not protect me, that somehow she did not stop that from happening.  I have had similar thoughts since then, not anger, but I have this amazing guardian angel, and she knows this is hurting me, and she can't stop.  She can't make my kids talk.  It just is not fair.

Monday, September 1, 2014

It's not his fault

This is a phrase I say to my husband all the time.  My husband just isn't as patient as me, and I know many others, even my sister has said she wouldn't, couldn't have the strength to do just that.  Landon's sensory issues are generally visual, like he likes to look over items, or he gets distracted visually; however, this has gotten better with the addition of the b12 injections we have done.  He always doesn't like new things on him, like he wouldn't wear his winter boots last year, so I gave up. I knew they were tight,and I just put him in sneakers and carried him to the car.  I will have to figure out something for this coming year..  He doesn't like hats unless he is very cold, sunglasses, or things like that.  We have introduced the puddle jumper for swimming a few times this summer.  I knew he wouldn't like it. It is tight, foreign, etc, but this am, my husband decided to try it.  Landon got into it ok, but he hated it on. he was thrashing, trying to get it off, we got him in with it, and here's where we differ:  i would do one minute on, praise him, try longer next time, or really, just try next year, but Alex says he should keep it on if he wants to stay swimming, so Landon decided he was all done swimming.  It started his day off bad.  Then I told Alex everyone has sensory issues- he says no, you don't.  I said I hate crowds, being hot, having my food touch, etc.  Everyone one does.  I will add tolerance to things like boots to Landon's goals for the school year.  he starts school on 9/8 and I don't know what I expect: a miracle, no, but progress would be amazing, noticeable spoken language progress is what I would give him every last item I own for.  Time will tell.