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.

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..

I am not there yet

Yesterday, we had a dinner put on by jowonio for parents who have kids receiving services.  It was free to us and included paying for the sitter we used.  We had to introduce ourselves and say what we admire most about our spouse.   As soon as I started talking, I broke down crying; no one else did.  I was just saying that Alex sees the big picture and reminds me that everyone will be ok.  Another person later spoke and addressed me saying, really, it will be ok.  What is ok though?  I am being selfish, but I want ok to be just like all the other kids, no struggles.  I don't want to change him, but I hate seeing my son frustrated and working so hard for skills that do not come without practice.  Then I read the email from his TA about his day and it started with "Landon had another fantastic day."  So am I am reading it, I am looking for the fantastic part, but I don't see it.  He tented his books, he did not know what to do with the rainbow pieces again, he struggled on the trike, he was upset in speech with the high expectations now, etc.  He did play with peers with a new ball popping toy, he ate his cereal fine, he helped pass out snack, and he was in a good mood.  Still.... what is the FANTASTIC part, and then as we sat at the dinner yesterday, with people around me talking about their kids head banging over and over so they have marks, another girl who will not eat at all, a 4 year old who never sleeps, a nonverbal kid headed to Kindergarten, it hits me....I don't feel I belong here yet.  I don't fit in with the typical kid, but I can't relate to all of this.  My son has been trying to talk since 14 months, trying so hard.  He is so smart.  Even the severe kids with ASD people were talking about, were talking at 3.5 years, but not pointing, no sharing, no eye contact, stuff my son did easily and early.  So it is the apraxia that prevents him from speaking, which is so frustrating, because he has so many more skills than many of the other kids whose parents I sat with.  I had a hard time listening to the speaker.  My mind was on my boys.  It's a total grieving process, and I am definitely not through it yet.  I am just not there.

Broken

Broken is how I feel to read a stranger's opinion on my baby.  Broken, shattered, falling, falling, falling down.  I am also angry.  I am starting to realize how rare SLPs like the ones I work with are; we find the positives in everyone and everything, give 100% no matter who the kid is, and always offer hope.  Is this new training? sad.

Inchstones/milestones/tenstones

Sometimes we work so much harder on a milestone, so much harder, and have much more worry.  Parents really have no idea what it means when their kid does xyz, until you have been waiting for it.  Logi is fairly low tone, no shoulder stability, weak trunk, etc.  He sits with a rounded back and poor posture.  That has been helped by the taping he has going on.

Anyways, today at 22 months, 6 days old, he index finger pointed for the first time! I did not see it, but when Alex woke me up, it's the first thing he said.  Even he gets it.  Does it mean Logi will do that every time now? no, probably not. The nature of motor planning is lots of repetition, but it is in there, and he can do it again. That's with no OT services, since he has not started yet.  Just hard work on the parts of my family.

So today was a good day.

Then Landon took his blocks and started to put them in a line on the floor. After the first couple he stood up and tried to walk on them.  So I remarked that it was a balance beam and we put more down.  We then walked all over it. #pretendplay

:)

Have a good Sunday!

Sometimes it feels like it's just the speech

Sometimes I look at Landon, and he is so aware, so connected to me, to his brother, to his teachers, to his family; he is always happy and he tries very hard.  Sometimes I think it's just speech.  once he talks, he will be ok, but there is still so so so so much to do.  It is very overwhelming.  One thing Dave said which i knew, but I did not feel he needed to say was, "I don't see a single skill here developed at his age level."  Now he did not assess his numbers, colors, concepts, shapes, letters,which Landon is pretty good at, nor did he see him move along a playground or anything, but ugh.  That hurt a lot.  It just stung.   Each day, we keep working hard and moving along and trying our best.

Reflections

I spend so much time thinking about my kids.  I notice it the most when I am in the shower, alone.  I will stop and think what am I thinking about? and it's always them, always, and not like oh my gosh, they are so cute, but how can I move them ahead?  What other comment did someone say? etc.

We went to Pittsburgh to see Dave Hammer.  We left on Valentines day.  As we were getting ready,  Landon was helping me put toys in bags and he was excited to go somewhere.  I told him we are going somewhere to see if you can talk better/more.  Alex was his usual nervous self when getting going and he was saying how he doesn't want to go.

Off we go.  We are about an hour from home and realize the storm is hitting us and going against our direction, so we just driving into it.  We stopped at a rest stop and got back in the car to some horrible snow.  I called my dad to check the radar and he sat it would be pretty heavy for the next two hours.  We were going maybe 40 mph on the highway and I told Alex it's fine if he wants to stop to stay somewhere else, then continue on, but we just continued you.  The thruway was closed on one side soon, and we realized two people had died.  There were cars off the road everywhere, and finally the traffic stopped.  The police told us to stay in our cars and we would be there awhile.  It was about 90 minutes before we could get going and that part was horrible.  11 cars were off the road and many, many accidents.  We finally got there in 10 hours instead of 6.

We had a lot of fun at the Children's museum.  More on that later.

We had a two day evaluation with Dave Hammer.  Landon is funny sometimes.  Last year when he was evaluated, he cried and sat on my lap and did it.  This time, he just looked away, like ha ha, you can't see me.  He also hit.  Dave was better with him the 2nd day and seemed to have taken some time to think about Landon.  It was frustrating, and I understand it better now as I read Dave's comments on the apraxia kids website, that he wants a wide sample and a risk taker to be able to say yes, I hear apraxia.  I am certain Landon has apraxia.  I have a huge sample on him and he has all the soft signs too, but anyways, Dave gave him a working dx of apraxia.  He had a lot of comments.  Some hurt a lot, and others maybe could be helpful.  He is a nice man, but global apraxia is still rare and still misunderstood and that is so hard.

Here are the comments:
-signs and gestures can be used for tx to elicit sounds, but not expected for him to imitate them.
-use of device and one device needs to be done
-riftin chair for him to sit in during tx, for part of it, maybe 10-15 minutes, with lap tray
-cloze procedure with music is helpful
-finish activity, He cannot dictate every activity
-motor planning, sometimes it shows up globally for him, but dave felt sometimes Landon did not even try enough to say it was motor planning (to me that's lack of confidence, but)
-needs to work on representative play
-use slow rate of models, gives his body time to process and then motor plan
-genetic testing should be done for both of the boys
-he is a puzzle-- hate that
-receptive language: "not possibly developed at age level." "not convinced cognition and receptive language is high."  BS. should not say that. we know how global apraxia impacts those tests
-"I keep reading in all his reports and paperwork that he is a smart, bright little boy, and I just don't see that." (cue tears)
-home practice- narrow the focus.  targets in tx narrowed, cant have too much coming @ him. 10 minutes targeted speech practice, 2x per day and then work within context
-higher expectations
-Landon needs predictability, routine
-he recovers quickly
-he is pleasant
-he can engage well
-he laughs to get out of work
-a  few suggestions for his sLP like she took too much time between practice opportunities, don't bounce on 1st sound, not /i/ /n/, but /in/, and he wrote down the sounds he heard him use during his 90 minutes with my guy:
which were 6 consonants and 5 vowels.

I am not sure it was worth it yet.  I feel a little disappointed, but I know Landon needs to work on overall imitation.  I still don't think global imitation has to be the precursor for speech.  I am not sure.

I guess overall Landon tried and worked hard, but he ignored some requests and then I did not like Dave painting him with a broad brush in regards to cognition.  Very unfortunate.