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.

My own island, a week later

I lately feel like i am on an island, all alone.  I know I am not, but whenever I try to Alex, it's like he is not worried or has nothing positive to say.  I totally feel I make every decision on my own and it's overwhelming.  We spent the last two days with Dave Hammer in Pittsburgh.  I promise to go through my notes and post a lot, but it's disheartening.  This is about the 4th time someone told me Landon is a puzzle.  I hate the word puzzle.  It's like either he has the pieces and they aren't put together, or we are missing a piece.  It seems unfair to call him that.  I finally asked my husband what he thought, and he says "nothing I didn't already know" or "well they have to justify their jobs,"  What?!?  Does that even make sense?

 I will write more soon.  Today was a sad day, although I am hopeful that some gleam can come out of this.

I will say that, as always, I am very proud of Landon.  He is a good little boy, pleasant and all :)

Maybe "ignorance" is bliss or maybe it's better to think that way

Case in point: my husband

He is a great dad and he loves those boys so much.  He has still probably not read or knows much about apraxia, developmental coordination disorder, hypotonia, or sensory processing disorder.  Landon was banging something yesterday, like he often does, and Alex is like Landon why do you have to bang that?  I told him, he has sensory issues. He still bangs things.  Alex looks at me exasperated.  Landon did one other thing yesterday and I can't remember what, and I had to explain why.  Alex tutors a teacher I work with- her son for math.  This lady is the best special ed teacher I have met and she can really move kids.  I already talked to her about tutoring my boys in a few years for reading.  Alex says, they both love to read, so they won't read tutoring.  I don't think he has any ideas what the standards are now, or how a child learns to read.  I asked Alex what he thoughts about me coming out on fb about my boys having apraxia, and he doesn't want me to yet.  He says, and this part I liked, "Apraxia is not all they are about."  True.  Seems like we both are taking different paths to deal with or not deal with this.

Good weekend so far

So far, the boys have been great this weekend.  I got the rest of Logan's reports and Landon's progress reports and feel ok.  Logi's stuff is mostly speech.  He is so, so, so, so far behind in speech.  He also is not pointing, but he really is low tone/poor shoulder stability.  He qualified for OT, then I find out there are 25 kids on the waiting list and he may not even get it.  Ridiculous.  So I am on the hunt.  

Landon's progress report had some good things:
-"Landon is a very smart boy. He understands much more than he is able to communicate."
-"Landon is a special boy with a great sense of humor."
"Landin is very self motivated.  He has had a few interactions with peers that were sustained for a least five minutes."
-"Novel play schemes are met with refusal.  Repeated exposure helps him, but novels activities are difficult for Landon to accept as an option for play at first."
"He is beginning to jump down from 8 inches with only verbal/visual cues and one hand held."
"He has demonstrated the ability to catch 4 out of 4 throws using a 6 inch ball from 3 feet away."
-"Landon often initiates at writing tasks holding the writing tool in a gross grasp. He easily accepts support to switch to a fingered grasp.  Imitation of directional strokes is emerging."
-"Motor planning difficulties continues to make skills such as scissor use, bread stringing, and opening containers difficult. He demonstrated improved skills following repeated supported trials."
-Landon can articulate several consonant sounds- There include: p, b, m, n, t, d, k, g, h, and w. and at times a lateral /s/. The focus remains on establishing Landon's ability to readily produce them on command/in the moment."

That is some of his stuff.

They are not sick anymore, and that has helped this weekend greatly.

I will post more about logi soon.  I have Logi's meeting for the next 6 months Tuesday!

kim

Being ostracized

I am an SLP.  I work with kids of all abilities, and let's be honest, my most significantly impaired kids do not have many friends, and some care, and some don't.  I have a boy with super high functioning ASD in 5th grade.  I usually see him eating lunch alone since I have to work down there during that lunch block.  I bring my Ipad down to lunch and he plays it, or I move him to another table to be with peers.  He tells me does not mind, but when he sits with his peers, he seems happier.  He is the best kid.  He tells me about his Autism, how it feels, and what ways he is different.  He also says he remembers when he could not talk and how that felt.  It is fascinating.

Luckily, the kids I have with apraxia here, are almost resolved.  One is so silly.  He always reminds me of Landon.  He laughs or jokes to get out of things and he is so cute and he knows it.  He will give me a big hug instead of repeating something he said.  He is also advanced in reading and in Prek, before he could speak, they called him Letter Jeffrey, since he knew all his letters but no words yet. 

Life is busy here.  I do get that.  Family support is very minimal.  My biggest supporter, for sure, is in paradise watching over us.  I often stop and I really do this, when I am with my kids and think what she thinks watching me.  I do pass on the love she taught me.  I know she is proud.  I also know she would be worried about my kids and would be researching new things all the time.  That's how she is.  My dad has no idea what to do to help.  Aside from Christmas, I really have not seen him.  Time flies by.  When I take them up to his house, it always feels dark and quiet and lonely. He never comes down to my house.  Maybe he is worried about them.  He does not say except to ask me how Landon's speech is.   I have a very typical, probably advanced, surely advanced! nephew who is so sweet and a very kind little boy. My dad does not really go out of his way with him either, but when they are together, it is probably more fun.  I get that.  My brother has an invisible disability too.  He stutters and is a huge advocate for that, but when it comes to my kids, he really does not bother with them.  Usually they are not even acknowledged.  At the baptism, I had Landon go say hi to David, because 10 minutes had passed, and it seemed like he was invisible.  They needs to be more acceptance, more trying to connect with them.  My boys are amazing.  My sister tries very hard, but she has two boys, and I am sure, is overwhelmed just with them, and 2 extra are hard!  She loves my kids though and celebrates each little step as huge like me. My boys are handfuls and a half.  That's pretty much it.  I don't want to force relationships on others.  My kids are amazing and it's their loss, but it still is our loss.  It very much so feels like our loss.

Happy Wednesday! 

Loving them completely

There is a sense of urgency all the time.  How much longer until Kindergarten?  How much more time until?  Each 23rd of the month, I get sad.  Another month, not speaking.  What did we learn this month?  What do we still have to accomplish?  It feels like Kindergarten is the goal.  I have gone from, hoping they will both be caught up by K, to realizing I am praying for inclusion now.  Weird.  I would never even let Landon out of an inclusion room ever. He is too smart, but it's odd how things change.  I am terrified, completely terrified, that they will be the same.  That when Landon turns 5, he will be the same.  He can't be, right?  He has to make more progress.  It's so scary.  Am I doing enough?  What else can I do?  Where are all the right answers?  What is even the question?  There is no rule book, no guide book, or anything.  In each moment, I take a deep breath, and remember, all I have is love to give them both, and I do love them more than I could ever, ever express to you.  I would literally offer my voice to either of them, and learn ASL for the rest of my life.  I have no issue with that.  I would DO anything for no struggles.  I pick them up from school, or out of their rooms in the morning, and get kisses immediately.  I get running hugs when I pick them up.  I FEEL love.  I don't need them to say it.  I know it.  I know it all.  Motherhood is a tough journey.  We enter it with no idea what it will be like.  I totally get how hard it was for my mom to leave us, how hard it was for her to be sick around us. My kids are my lifeline, my heart walking around outside my own body, my everything.  It is very hard to not know what to do.  I am a problem solver, a type A person, and I work hard to do whatever I think I can do, but then I don't know.  I don't have all the answers, SLP or not, and for me, that's hard, so I choose love. I choose it in every instance.  I can always choose love.

Jealous

Jealousy is such a bad feeling.  bad bad bad.  I know it's not good to be jealous of others, but I can't help it.  I am even jealous of other kids with special needs making faster verbal progress than my kids.  How awful is that?  i just think how is it this possible?  I know our time will come sometime, but in the meantime, I get mad reading other people's blogs or posts with more progress.  I can't even read lately about someone's mom watching their kids or babysitting or helping out.  i barely ever see my dad it seems.  Somedays I hate fb.  I think I will definitely give it up for Lent this year just to get a break.  I need it.  Jealousy is a bad feeling.

I try to be positive right?  Try so hard.

My boys are happy happy happy.  Landon is less frustrated and really mostly gets mad when he hits and then he bursts into tears and he feels so bad he did it.  I hate that.  I want to cry with him.  I tell him it's ok- you will talk one day. it's ok. it was an accident.

Landon is doing great with utensils.  He is eating lots of different things.  He is doing better playing on his own, but I do catch him flipping his books if he is alone.  If he is with you, he just reads with you.  He knows he is not supposed to, so he is always looking out for you.  He needs so much help with speech, but within the context of a book, I can get him to answer questions, such as Who is hungry.  Who is on the slide?  Where is the... Show me the yellow bird.

At school, I keep hearing "IT'S ALL IN THERE." "He is on the cusp."  How long can you sit on the cusp?  He said his name this week in circle time, the next day, could not say it, so got up and hit the big mac for his name. He knows when and when he cannot do things, which is amazing to me.  Landon is just amazing period.

Logi is logi.  He doesn't listen and he is crazy.  He is super social, so I do like that and gets me less worried.  speech much more severe though, but we take what we get.

Keep the prayers up and so sorry for so many of you that I am insanely jealous of- I can't help it.

me

Seriously hating winter

It's Feb 1. About 1 more months of winter left, then we at least get out of the teens and freezing weather.  My moods take a nose drive this time of year.  The kids can't get outside, which means so much of the day is focused on what they cannot do.  Yesterday we did get them a bounce house in a nearby mall and it was fun.  Logi is crazy and Landon is so happy.  Someone actually came up to me to tell me how social and friendly Logi was.  That was great.  Landon was busy dancing in the disco room lol.  He is his own man for sure.  Today is Willie's baptism, a great day.  Due to naps and sicknesses, I am only going to the baptism so far.  If the kids get up early, I can make it to the party.  I thought of this last night, pls sleep in, pls sleep in, but Alas, Logi was up at 5:10 and Landon was later, maybe 545.  It is logan who can't make it later in the am. He ate lunch at 10:30 today... just venting.  so much I want to do and can't or circumstances are holding me back.  Husband has no clue what to say or how to help.  just basically it feels like my fault if things don't work out.  On tuesday, i am meeting with a friend from the apraxia group who is an OT and AAC expert.  I am going to push the AAC now.  at least then we have a way to communicate that is more consistent.  Not waving the white flag, but moving on.  Sickness has not helped January be any progress.

Oh, and Logi got all his scores for the next 6 months
Speech/Language: 65
Social: 81
Adaptive: 85
Cognitive: 77
Fine motor: 67


Receptive higher than expressive.  It's motor planning written all over the report.  Deja vu. Genetics suck sometimes!!