The comments

I have been in Early Intervention with Landon now since age 10 months.  I have heard lots of different comments from evaluators, therapists, agencies, anyone who interacts with him, and many have stung. Some have just stuck in my head, as well meaning comments, or questions/thought, but I have not forgotten.   I thought maybe if I write them down once, i can forget about them..

-"maybe he's behind in gross motor, because he's just so social."
-he has a problem with his thumb, keeps it tucked in (My Bil hated hearing that, said it was ridiculous he was getting services, which really, some of the reasons seemed weird at the time)
-at his 1 year bday party, I had a question about his first word. my BIL looked at me and said, has he had one?   (He had, but maybe they were pop outs)
-At 15 months, Landon was producing lots of jargon, some meaningful, some meaningless. At a family party, someone told me when he talks, he will have a lot to say.
-my babysitter called me and said Landon liked wheels and I needed to have him seen by someone.  He was about 16 months.
-I was out walking with Landon yesterday, and he was talking to me. A neighbor down the street came out and said they thought it was a cat.
-When getting another eval done, the lady told me I was lucky Landon points.
-When checking his hearing, he would not sit still, would not do the test.  The audiologist said he would not follow up with a sedated ABR, as long as I looked into "behavioral testing."
-Everyone i meet says their kid did not talk till 2, 2.5, whatever, but it seems to be getting higher lately.
-My dad said Landon is not a big hugger, which is not true.
-every SLP who looked at me quickly would tell me he does not have apraxia- "he will find his articulators."
-One OT told me Landon would be the type of kid who when asked what he is scared of, will just answer what the kid in front of him said, because he won't be able to think of and produce something else.
-and I have heard too much from this recent daycare to write down.

Apraxia (especially global) is very misunderstood.

We need to do more to get the word out there.

What is enough progress?

I am an SLP by career.  I am probably picky with progress.  I work so hard with him, and more importantly, landon works very hard.  Sometimes he seems tired by how much energy it takes him to talk.  Let's focus on the positives- he has just a few words he can say spontaneously and a couple others on prompting, but daily, I hear many words spontaneously or as he is playing, asking for something, which is great.  If you don't know him, you would not understand but a few.

In speech on Thursday, he said about 15 words.  Is that good progress for 2.5 years?  I don't know.  I know he should be able to have small conversations with him by now, and he can't.  I know he should be using pronouns, but he can't say dada.  I know he should have at least a 2-3 word utterance, but he struggles to get a word out.  I know he should be able to use final consonants right now, but that's so hard for him.  The speechie me knows too much.  I hear something and I know what it is or means.  I am new to this apraxia journey.  I feel sad for him.  I feel angry for him.  and then I feel so proud.

This week he picked up /p/.  We have been working on /p/ for 15 months, as in working very hard, prompting, modeling, bombarding, etc.  He says /bip/ as he walks around.  I know it means "nothing," but he starts with a voiced consonants, which he finally can say with enough plosivity! and then uses a vowel I rarely hear and ends with a voiceless sound.  CVC pattern!! (consonant vowel consonant), I am so proud!!

Now he has most consonants, aside from /k/
and He also has most vowels, although tends to use the same 5.  That is progress.

He says a lot of nonsense words, but I think he is practicing.  I am trying to just make him feel proud.  He tries now if you say- try to say, or you could say, he will say it.  I praise every attempt.

Now if only the whining would stop, I would be on cloud 9 this week, but it's nonstop.

Soon, my sweet boy, you will be able to express yourself, and won't feel so frustrated.  Until then, I am your voice when you can't be understood, and I am ok with that.

I love you more than words could say and do say, and together, we will see this through.

me

LOGAN IS 1

My sweet Logan Gabriel is 1!!!! He is so cute and adorable and happy and has the best laugh and and and and... and I LOVE HIM.  This past year has been the most difficult i have had since my dad remarried.  To see both of my kids not meet milestones, despite working so hard with them, has been disheartening, but there is a joy when they do something we have worked towards and I do feel so proud.  Logan is another smart little cookie.  he understands so many social cues and situations already. He is now able to crawl, pull up, cruise, and get anywhere he wants to.  He is strong.  I did not have to show him any of these steps like Landon; he just needed the core strength, but he is not babbling yet.  He is supposed to have a word at 1, and no real sounds aside from /m/ yet, but that's what it is.  I say bababababa over and over to him and I massage his little/big cheeks for sensation work and I work on feeding, and I can't force him.  He is starting speech soon, 1x per week, and I can do the rest.  So now call me, FULL TIME SLP to 40 high needs kiddos at school....anything from apraxia, autism, auditory processing, dyslexia, learning disabilities, selective mutism, ODD, language delays, fluency, etc, etc, to a FULL TIME SLP to my kiddos too.  I don't push them though; it is all through play.

What can Logan do well?? laugh, smile, hug, kiss, read books, persist, get anywhere, eat food if I put it in his mouth, try to hug Landon constantly lol, loves bath, loves mommy, knows when he is doing something he is not supposed to, and he understands so much already.

We love you, LG...let's focus on all the positives because both my kids are made for me.

visual schedules

I use visual schedules with many of my groups at school.  It helps them know how much they have to accomplish, especially if a task is difficult. I asked for one to be up at school for him in November.  I offered to make it.  We had another meeting about it in February.  I asked again, said it would be good for my son; he doesn't need to guess how much longer till gym and he could point to say he is looking forward something or to comment.  it never got made.  I sent another two emails saying I would make it myself again and then asked if it was done.  The teacher said she would do it over the weekend.  i know this is daycare, but it is still best practice for all kids.  Today, I find out, Landon does great with transitions, so there is no need.  WTF?!?! Why did I even go to those two meetings to find a way for him to be more successful, plus she didn't tell me; she told one of his therapists.  I am very much so over this daycare.  I would like to pull him now, but I don't know if he will get into summer school and I don't want to keep changing things for him.  His notes say stupid stuff- today he is sick again, so it said threw a few toys today, picked up when asked.  i don't know why I need to know that.  This is probably all just venting. I am not there with my son and I just don't need to know the negatives.  It's hard enough that your kiddo can't talk.  It drives me mad.  None of these ppl have obviously had a "special needs" kid.  BLAH

Frustration

Landon gets frustrated sometimes.  He likes to hit.  Sometimes when he hits. it's not frustration, but when you tell him no. He sits in time out usually without leaving, but cries when he is there.  Other times, he gets mad when he can't communicate. I wish I could be at all the sessions.  I saw that they in his notebook, two therapists wrote that he could go to the door and bang on to try to say that he was all done or wanted to go. I sent a text saying put your hands out, ask if he is all done, and if he is, he will just sign it with your hands, or sometimes his own.  Lo and behold, it worked for him to say he didn't want to play with something, rather than tantrumming.  I think if you work at a school like I do, with may noncompliant, difficult kids, you get all the tricks.  I can motivate most of my kids.  I usually don't have to write a referral and I have so many behavior plans in place here, it's crazy.  I use visual schedule, behavior contracts, whatever, to get to the goal.  Sometimes I think my therapists are just stuck.  I wish I could be at sessions. I need to work on expanding landon's play, but language is a big part of it.  One of the schools I toured this week, has play therapy he could get.  Has anyone had their kid get that?  What did you think?

Kim

positives

Someone once told me not to look back a week, or a month, but look back greater periods of time, so I try to do that.  Sometimes that makes me sad, too, because say, a year ago, at 18 months, Landon was saying dada, now he doesn't really say it much, but that's ok, i guess it is part of the process!!

But what he has learned to do:
-run
-climb up stairs with the railing
-jump
-walk on a balance beam
-assemble any shape sorter
-use a spoon if he wants to
-unvelcro or velcro his shoes
-drink from an open cup
-bite into food
-shake his head no/nod yes
-brush his teeth- not screaming anymore
-identifies colors, numbers, shapes, vocabulary
-follows directions (when he wants to!)
-blow kisses
-wave w/o the Hitler salute he used to do
-has gained a lot of vowels and most consonants
-tries to imitate
-can assemble puzzles well
-follows hand motions to simple songs that he is familiar with
-gained some words
-pairs pointing with approximations now
-use PECs if needed so we know what he wants/need
--SOO close to puckering!!
-tolerates cues to face
-takes turns
-hugs/kisses his friends


Iam sure there is more, but sometimes you need something like this!!

Not much to update

We keep trucking along here.  We have a sensory diet checklist in place for landon to increase his body awareness (can't find his nose on his body, but sees it on everyone else's)  He likes the activities and I purchased a therapy ball and some weighted balls to leave at daycare.  I think he is still very bored at daycare and frustrated.  I guess he was hitting himself in the face out of frustration once this week.  How horrible that he can't communicate and they can't find a way to help him.  I called the ECDC- Early Childhood Development Center and they go into daycares for free and give ideas and give presentations on varying needs.  Our daycare would have to agree to this, but the lady on the phone advised me to call the state licensing board, since they are not following through with Landon's program. I did that once at his first daycare, and got kicked out.  I am not sure what to do.  no visual schedule, no picture cues, there is nothing in place that we discussed at our first meeting in November, then again in February, nothing.  i talked to the teacher again on Friday and she promised the visual schedule would be up this week.  Then they moved all the kids up in his class, but him.  They moved little kids up with him, just turning 2.  All of his friends are gone.  I did not realize this. On Friday, when I picked him up, he ran over and pointed to this kid named Alex who was in the kitchen area with him.  Sometimes the kids are mixed towards the end of the day, so I just said Alex when he pointed to him, but now I think he was definitely trying to tell me that he was new to the room since he showed him to me. I don't think that's right to hold him up because of his speech.  He loves Elijah and Elijah is gone.
Logan is definitely on his way to apraxia :(  he will not take a sippy cup or anything like that near his mouth- flips out.  He will not feed himself, but he will pick up food, and he fights a lot of solids. He also choked and threw up over these carrots last weekend, so since then, he has been extra cautious, plus feeling sick. He is not babbling.  I referred him for speech therapy too.  My only hope now is that he is not as severe as Landon.  Funny how some people don't do much and their kids have no issues, other people are SLPs and do speech from day one, and can't control it.  Life is not fair.

Have a blessed Sunday,

Kim