haven't posted as much

I am still here.  I am usually thinking what more could I do?  Is there something i am missing?  I really, really wish we had a CASANA trained SLP nearby, because I would love an expert involved; however, Landon has good school SLPs and me, and I think speech is really, really hard for him. BUT I do see progress.  He is using a lot more signs. He is trying very hard to imitate.  He stops, looks at your mouth, and tries.  He really struggles to imitate.  He is saying "no" now everyday, not every time, but every day.  He amazes me.  His gross motor skills are coming along so well.  We went to an indoor huge play area today, and I don't think anyone knew he had a disability.  He was quick, strong, appropriate, and did everything everyone else did.  We are working hard on his speech and his play skills.  I am proud of Landon.


Logi is using his iPAD well at school and I just bought him his own and the school paid for the app.  Now I have 2 little ones with Ipads. Amazing.  Not what I expected, but I would not give them back if I could.
So we press on.

I promise to write more soon,

me

this is so hard

This journey is so up and down, but if there was a trajectory towards up, man, this would be easier.  Logi is moving up now.  He can use a cup, a spoon, and is imitating his peers.  He is very social.  He IS SO FAR BEHIND on Language-- so so so far, much further than Landon at this age, but yet, there is progress, so there is not as much worry.  Weird right?  He does not point, but he tries anything and isn't so afraid.  

Landon is so frustrated.  Being hit is becoming a constant thing.  We have the IPAD, signs, pecs, everything, but it doesn't say what he wants to say, and he is hitting.  He goes to time out and sobs.  It is a sick cycle.  I had to stay home from work today because I had a migraine because I cried watching him in school yesterday, cried in a meeting with his support teacher, etc.  She said- he is making progress.... to me, it is not enough.  It is so not enough.  I am going into high strung mode now, but i don't know what to do.  It feels like he is slipping through my fingers and I can't help him.  He is there all day now, and you pray school is the best, right?  It's scary.


It has been a stressful week.

When there is really nothing left to say

Sometimes it is hard to write here.  Months go by without any huge progress, yet something here has changed.  If I could do anything right now besides be an SLP, I would be a grief counselor.  I am fascinated by the process- I feel I have a lot to offer, and I really benefited from that kind of support when my mom died.  So my progress is acceptance.  I have realized I have accepted I have two kids "with needs."  That does not mean there are not days of denial, or cringing thinking about a vaccine, or getting a pedicure when pregnant, or something like that- it does happen.  I have to just block it out, think of another person who did that and their child did not need services, and then I move on.  Denial, is not so much anymore.  I am aware of their needs, but most of the time, I see them as pretty typical little boys.  They fight, they hug, they love me, they love each other, and they love to be outside.  They are just little boys afterall.  I did the bargaining too, and I still have most people with kids hidden on fb, and I realize that is ok.  Sometimes the bragging is just too much for me.  I don't need to explain that to anyone.  So where is the acceptance?  The acceptance is knowing they both have apraxia.  Logan has hearing loss also, and Landon has sensory processing disorder.  Otherwise, the disorders are similar.   They both want to learn and want to be right with the other kids.  I think this disorder was in place when they were just little cells, little cells I loved so so much.  I am aware that progress is slow, but I am also aware that there is nothing else we can do, nothing.  So what is left?  for me- to enjoy them, to laugh with them, love them, and remember that one day, everything will be just as God planned it.  That has helped me a lot.  So it still hurts, I still cry anytime I talk about them and their struggles.  It still feels so unfair and difficult; however, I do know that no one else could do this as well as me.  And that feels good, like I am giving the boys the best shot at everything possible, and that God picked them for me.  There is really nothing better than knowing that life is going just as it was supposed to... not by my choice, but by someone who really has my best interest in mind somehow and I have to trust that.  I will never, ever give up on the possibilities of my boys.  I have to accept that we have struggles, but I also have to accept that we take a deep breath, and enjoy the ride, tears, laughter, too much therapy, and all....  <3

Day 2 of school

Landon is a champ.  He goes to school.  He cannot speak.  He tries so hard, but there he is, everyday. Therapy after therapy.  One thing I notice once you become a SN parent, is someone will say, "oh he did great." and I immediately think, are you saying for Landon or do you mean for all children?  I want him to be like the others in what he can do and achieve.  One day he will, but it's difficult.  I just pray for something to make a difference...
something.

Please talk!!!

Ugh, summer is winding down, and we are not talking yet.  I guess that is it.  We are just not.  We stay the same.  I still think there is nothing more I can do, but I will keep thinking.  I have to look into essential oils.  I don't know.  i am just praying somehow, they can speak, someday.

When it is not just a home

We have to move.  I have been sad thinking about this, and my eyes have welled up in tears often.  I don't want to move.  I love my house, I love my neighborhood, I love my city.  I know I am not abandoning the city by moving to the suburbs, but I love to say that I live in city, that I can walk everywhere, that I feel very safe here, etc.  I love the way our neighborhood is always out and about, seeing everyone, that we look out for each other, that we have weekly neighborhood meetings.  I love all of that.  i am not a suburbs girl.  I know that I have to move before the kids start school, because the behaviors have gotten bad in our schools, and because my kids would not get the services that they could get elsewhere.  I do know that.  Of course, I had a dream to go to private schools, and that's not it now.  This is a hard time for me.  I hate change.  i hate to uproot the kids.  Where else can we walk to church, the park, to get ice cream, the library, the store, to see family, etc?  I am praying God will help me through this.... deep breath and gotta do what is best for the boys.

Appreciation

I am a person who needs appreciation, who thrives on it, be it seeing something, noticing, saying or doing something that says, "hey, i see what you do and who you are."  I have been in counseling since March.  I feel like a lot of my own grief is due to the fact that I am not raising typical little boys, and this is not a typical way to start out being a mom.  One day i hope they know I would never change them for anything, and I am so proud of who they are, no matter.  One day, I do think they will be able to say "thank you mom" for everything I have given up and done for them.  I don't need them to notice though.  I will never stop doing everything for my boys, and i remember it's not their fault that they are here, struggling; they did not ask to be born, and i am doing my best to protect them from pain and to feel some success.  I think that is true of any parent.  I pray that one day they are happy they are on this earth, and i don't want them to feel like it was always so much pain.  I remember my mom wrote that in her journal to me, saying I didn't want your childhood to be painful like mine.  I remember no pain in my childhood and it was perfect to me, even where maybe as parents, my parents thought it needed or lacked something.  Not to me.  My boys are loved and I know they know that.  Landon waking up and smiling a huge smile because I am waiting at his gate and throwing himself on me is all I need.  Logi smiling that cheesy grin, running at me, and patting my back, is my everything.  My boys are my every breath.  I am so heartbroken that they can't speak.  It's hard to put into words.  It kills me.  But what choice is there?  the only choice is to sacrifice to get them help and pray.  and to never, ever give up.  And I do that, knowing and believing that God has a plan, and has this all figured out for me.  I believe that somewhere.  Right now, I am not angry at God.  I do get frustrated at Him for giving this to me.  I am not a person who wants to be in this.  I would have like a 10 year reprieve from pain, but i am strong, because my mom made sure I was that way, and I can do it.  I really can do.

The lack of emotional support and appreciation from my husband is what really hurts. There is so little, and I don't think he gets it.  I have talked about it with him so many times.  I don't think it is that he does not want to get it; I just think he honestly cannot and just isn't invested enough to get help to figure out how he can.  He brushes things off without any thoughts.  He will say things and it does not occur to him, that they hurt, and he just continues on.  It's so hard for me to understand.  It is draining.  I am in a hard place right now with this.  I am in individual counseling, so that is good for me, and I can figure out a plan if I need to.

STUCK

We read a lot of books about stuck.  One Duck Stuck is one of Landon's favorites and then Sheep in a Jeep, where they get stuck again.  We are stuck too.

I think it's just part of this apraxia, but the progress moves so slowly, that you work on the same things over and over and over. 

When Landon was 2, I was working on blowing out candles.  He will be 4, and he can't do it yet.  He loved Mickey Mouse at 2- that was the theme to his party.  He still loves mickey.  Is that bad? I don't know. 

He knew all his shapes at 2, and now he knows his numbers.  Colors are still hard for him.  Concrete things are much easier for him.. 

He was only finger feeding at 2, and now he can use his spoon well.

He was a good walker at 2, but now he can jump and he can run.

He didn't care too much about Logi before he could move around, and now he gives Logi hugs and hits too lol all the time.

He could sign more and all done, then but now at 4, has about 10 signs total with prompting.

He just picked up the /p/ sound at 2, and now can combine /p/ with many vowels.


I guess we have to look at it this way- the progress is slow.  It is very slow.  It is so hard to be a part of.  The doctor said Thurs, the kids have to keep working and the threshold will build and it will all be figured out.

Unfortunately Landon is so frustrated and aware, so i am working hard on that part.


Logi just turned 2 and he is making good progress in everything but language, so we will wait and see.


Happy weekend....

2 months until 4

Today is the 23rd.  I do dread these days each month.  Logan is now 2-3 and Landon is now 3-10.  It is a quiet home.  There are laughs and giggles, and also tears and frustration.  There are so many things on the to do list that where do you start.  I have not a clue.  Today I was out trying to look for good places for Landon to go for the year after next, the year he is supposed to go to K.  I am applying for OPWDD support, which could help pay for some things, if he was approved.  So most of the morning was phone calls again.. and still have to work more on the IPAD and get Logi's picture book done.  I am so overwhelmed.  Each day, I wake up and think today with Logi- I have to work on the straw, the spoon, pointing, understanding language, following directions, play skills, core strength, etc etc
With Landon, I am working on jumping off an item, imitation of actions, imitation of speech, signs, the fork, the ipad, taking his shoes off, his shirt off, play skills, confidence, trying new things, body awareness, potty training.
It goes on and on.  It is so all encompassing.

Today we learned there is more testing to do.  I have to do more testing just to do it, so we will see.

I also learned that I could get meds for Landon with no big issue.  I am not a big fan of that, but I could get them.  Crazy.


To do this x2 is so hard.  If Logan was talking now,  I would be worried less, but my heart would be broken for Landon, so the boys do this together. We do this together.

I am exhausted.

Inclusion

Inclusion is a fantastic thing.  It includes everyone and all children are exposed to kids who learn differently.  I don't know but it bothers me so much when I am the reason your child checks the box for being inclusive, or you can say that you child has a friend who does not talk, or has trouble with using utensils, or whatever.  I don't know if I just sit here in denial, but I hate it.  I just hate it.  To me, Landon and Logan are regular little boys.  They have needs, but we don't want to be in your kids' class, so you feel good about yourself for being inclusive.  That is probably not what those parents mean, but still.  It's different when you are on the other side and you want your child to just fit in, not be singled out. 

The other side is so hard.  We want you parents with typical kids with tears hidden behind our sunglasses.  We are so envious that you are not worried about finding a school that will take your child.  We lose sleep at night thinking about how our child will ever make it out there without us. 

I had a dream that Landon was talking. It was beautiful.  I ache so badly for that.  It just hurts. I want nothing more than for him to speak.  Once he can speak, I can worry less, I know he can at least communicate his needs, be able to tell me something that happened, and not be seen for less intelligent than he is.

I think so far in advance and am so stressed thinking about moving, finding a good program for Landon, thinking should be go to K or not.

It's not fair that parents of typical kids can keep their kids back no issue.  We have to fight for it.  It makes no sense.  The whole process here is ridiculous.  Alex won't leave New York, so we are stuck.

PLEASE-----Speech progress!!!!!!! Please!!!!!!!!!!!!!!!!

hard work

So many people do not get this, not at all.  They look on with pity or are sad.  Yes, this is all unfair and everything, but you do realize I have two sweet boys.  Landon is so caring and concerned and hysterical and smart.  Logan is so observant and wants to do everything on his own, he is so funny, and he is protective.  Landon tripped yesterday and first I was holding him, and he was calming down, and logi was watching, but then as Landon usually does when something bad happens to him, he hit me, only one time, and Logi runs over and hits Landon in the head.  It made me lol.  He was so mad at him for hitting me.  The boys are so good.

Anyways, my dad typically has no idea.  So he says to me the other day that I will have to start working very hard with the boys this summer.  WHAT?!? I said Dad, I work hard with them everyday.  I have been for years.  He does not get it.  I know he means potty training, which we are doing, but still. ugh

Where will this journey go?

I still struggle with guilt, that I did something to cause this, that I did not protect my kids.  I don't think looking back I ever did anything wrong, but I don't know.  It's not fair.  I am proud of myself.  I see myself as rising above, as working very, very hard.  I don't think most mothers could do this as well as me.  I am being honest.  In our own bubble, we are so happy here.  We are thrilled when Landon signs open.  We are so happy when Logi babbles.  I can't even explain.  It is just pride.  Then we have to go out and we see that our kids are not like the other kids.  And that part hurts a lot.  It's easier to be inside, but not fair or right. 

When will Landon start talking?  I don't know.

When will Logan talk?  I don't know


When will Landon be able to try something new without feeling so nervous?  I don't know.

When will Logan be able to use a spoon or not throw his food?  I don't know.


When will Landon be able to draw something and tell me what it is?  I don't know

When will Logan drink from a straw cup?  I don't know.


So many I don't knows.  So many this is so not fair.


Yet we have to keep going and we will.


We have to have faith.

A new dx

I will start with life is surely not fair.  It has never been fair, nor will it ever be fair.  It seems to be fairer for other people, but I do know everyone takes a turn with this.  My turn is now.  No one has children who are perfect, all kids have challenges somewhere, and at least I know my kids' needs early on.

Logan Gabriel was diagnosed yesterday with a mild hearing loss in both ears across all frequencies.  As news rang out, I received texts that said things like "seriously?" "I am sorry" "and my heart sinks for you."  Everyone shares our pain which is a nice feeling.  Logan passed his hearing test the 2nd time at birth.  Landon had failed his three times before he had an ABR so I wasn't worried when they said Logi had passed.  As Logi was developed, he did not babble until 16 months, but again, concerns were said about motor planning, so I saw that as pure up apraxia.  He is still not talking, but he does babble.  He does try to imitate.  He is a very observant, social, and curious little boy.  Now knowing he has hearing loss, I see him strides and his accomplishments as amazing, another testament to how smart he is.  He is a problem solver.  

So last September, Logan was referred for a hearing test.  I had no concerns with hearing, so I said I would see how he developed with the addition of more services and daycare.  In December, I called and said I will take the hearing test. I signed consent I think a few days before Christmas and his first hearing test was on 2/19.  He failed that in the booth and responded only at 50db; however, I was assured that most kids 21 months would fail in a booth because their attention isn't always there. I asked the classroom teachers at his daycare and they said he hears like the other kids as far as responding.  Ok, so I will do this process but I was not worried.  His receptive language is not great, but I was thinking more motor planning or auditory processing, and the fact that his therapy is push in, and I can work on it more this summer So off we go, to two appointments with this hearing doctor before we had the ABR.  Alex had to take him and he could not eat.  He was miserable when he arrived at the hospital.  He got to ride off in a little push car and was honking the horn and was happy.  Alex did not go with him back there, but had got him changed into a little hospital gown and little hospital socks.  I arrived there about 11:15.  We got called into a tiny room at 12:30.  I knew it wasn't good.  The audiologist started talking as if I am not an SLP, so I said that I was, and I wanted to know the loss, what he can hear, what sounds he would not hear, etc.  The loss is 25-35db across all frequencies.  He would not hear a whisper at all.  Conversationally speech he does hear, but it is not clear.  He needs bilateral hearing aids.  So off we go getting this.  He can get more services.

How do I feel?

Mostly I know all of this is out of my control.  I did everything and made good choices for my boys, and sometimes, life isn't what it should be.  We have to grieve the little kids we wanted and thought we deserved to have.  Instead, we marvel at their accomplishments and we love them so much it hurts, and I know it hurts, because I couldn't sleep last night and woke up about to vomit this morning.  It hurts so bad because it feels like it is us. In the grand scheme of it, I would take hearing loss over apraxia anyday. I will get him what he needs and see if it helps.  I will continue to be proactive.  I am sad for my Logi.  He is such a cool little kid.  I can already see the fight where he doesn't want to wear his hearing aids and I hear him talking and it is beautiful.  The life I see ahead is beautiful and I pray to God he gives us a chance soon.

Sitting between hope and despair

On two separate days recently,  I actually thought I should just give up.  It was kind of scary.  I thought maybe this is it- I will  have two little nonverbal boys forever and this is my life.  The truth is, I actually look for nonverbal adults everywhere I go.  I have yet to find one that was not physically or severely disabled in some way.  Am i looking in the wrong places?  Not sure.  I still don't see many kids who do not speak.  I still don't get that part.  Anyways, I was not meaning give up, like stop therapy, but just not do all the extras.  However, I can't do it.  This week I really drilled the "open" sign with Landon, to use on his own, and guess what, he can do it.  It looks really cute because he is dramatic and his motor planning is off, but he learned it.  It is so much easier to prompt by sign than it is for him to verbally produce speech.  "ON" is back, but it came back as "om."  I hear yea and mama and yum and his usuals, but nothing really new that is sticking.  He is still trying.  I look at him as strength.  I can't give up.

Logan is babbling more, starting to vary the sounds.  He gets his point across too.  He knows where everything is and he figures how to get stuff himself.  I have so much work to do with him this summer, but I am hopeful.


So most days I sit between almost throwing up thinking Landon will be 4 and may not really be speaking, or that I actually have two boys with apraxia.  I look at kids doing activities, like today I saw a little soccer league, and I pray with every ounce of my being for my boys to be able to participate in something like that.  I see kids joining activities and I just hope my boys can feel confident enough and with a sensitive enough coach to do that one day.  Right now, I would never let them do it.  But I have to hope.  I have to.  Life is too short to wallow in despair; we have to choose hope.  and prayer.  and have faith that God has this all figured out.

I am in so far over my head

I was talking to my friend Nicole last night. She is an SLP also going through life with a special needs child.   We were discussing how much we do:  choose and program the AAC device, make core word lists, make picture books for our children to communicate, constantly email, keep track of everything, and we are exhausted.  Lucky for me, I get to go to work everyday, but she is home.  I often think about all the other parents out there who want to do the right thing, but are not trained; I have no idea how they make it.  I am in so far over my head and I am an SLP.  I have no idea what I am doing usually. I love language and fluency disorders- that is my expertise.  I am bilingual.  I totally disliked any of my artic, AAC, or motor speech classes, and yet, here I am.  I work with kids who do not have anyone working with them at home, and they do move.  My son has everything ever in the world, and he is stuck. To say I am overwhelmed is an understatement.  I need to make another communication books and order more pictures of food, people, etc, and yet I have not even ordered Logan's newborn pics to hang up and have not worked on a baby book since I started this process.  The world has stood still. There days I think things will be ok, they will get better, and there are days I think this is my life for the rest of it, and I will never make it. I am just going on.  Landon is not sleeping enough, so he is hitting more when he is so exhausted.  I take all his toys out, put him to bed early, have black out curtains, etc, and I am not sure what else to do.  I am just lost. 

phone calls and hitting

I got to work today, immediately overwhelmed by how much crap I have to do, kids to see, and today we had a field trip.

I also came in today knowing I had 5 phone calls to make.  Phone calls could be my life.  Most of them require a message let, a follow up, or something.  It is never just one phone call and that is it. 

So I had to call Logan's early intervention coordinator to figure out if it is best to get a new SLP. That was a 15 minute call- she is calling the SLP and will be back to me.

Left another message for ARISE horseback riding... playing phone tag, but need to see if this horse back riding place is better suited for us

Had to call Dr. Dosa to get genetic results- looks like all is fine with both boys genetically

Called the coordinator for the program I am trying to get Logi into for the fall to check on it, etc, etc. 

The phone calls don't end.

Landon has been hitting a lot.  It is not usually frustration, but more excitement, like his favorite part of a book comes up and he hits.  I don't know why.  He can express this with laughter and happiness, which he does, but then hits.  Ugh.  I got an email that he was hitting a lot today.  He does not mean to hurt anyone. 

I sent an email with his updated core vocab list.  You know, all the work, it never ends.


I mostly think I am planting seeds right now.  There is nothing else to do but plant the seeds and pray they work.  There are days and times that everything is impossible.  You hear whining and you want to just cry.  You have no idea how to program an AAC device and have to learn.  You spend all your money on therapy, trying so damn hard, for progress, not perfection, just progress.

This is so exhausting.


It is hard to explain.  We need some prayers with all the little things we are trying to handle and plan.

thanks.

My child is no less amazing than yours

Precocious little children are everywhere.  I take my kids out all the time and inevitably we run into small children. I always kind of hold my breath as they approach, kind of hoping I will run into one who does not speak somewhere.  It seems so rare, yet I know how common developmental delays and disorders are, but maybe others just don't take their kids out.  I don't know.  When I see two typical kids together in a family, my heart hurts.  I look at those parents and think you have no idea at all.  They will be on their cell phones, not tuned in, not noticing the little things they are taking so for granted.  I once ran into a mother with a 16 month old.  I overheard her at the park saying apraxia, so I went over to her and asked about apraxia and her child.  She said oh I think he has apraxia. He is only saying about 20 words.  I looked at her and said that is highly unlikely.  He had no other signs because being pretty much on target for language.  I told her it is a serious disorder that she shouldn't just throw around.  That was a year ago.  Now everyone I know is pregnant.  Thrilled for them, yes I am.  Three good friends of mine are expecting babies.  Odds are eventually one of my friends or family will have a special needs child.  Autism is 1 in 42 for boys, so just that, will happen.  Apraxia is 1 in 1000 and I think I have that covered, but it would be nice to relate to someone else.  I try to tell people children are amazing, you love them like no other, but they don't solve all your problems.  In fact, I am pretty sure those who do not have children by choice are no less than happy than those who choose to and can have them.  It is all a lifestyle choice.

Anyways, my subject says that my children are no less amazing than yours.  I posted something on one of my groups the other day and I literally said I would give up my leg for my kids to talk.  Laura texted me and said she believes it.  It is a desperate feeling.  Kids who speak, everyone loves.  Oh my gosh, did you hear him.  The quotes show up on fb and get so many likes and comments.  People write them down in baby books to remember what the child said.  The children who communicate through other amazing ways are often overlooked.  It is true, I used to do it.  Shame on me.  These kids are probably more amazing-- they are not ordinary, but extraordinary.  Let's all endeavor to find the strengths in every child we meet, disability or not.  Every child is here for a reason, and mine are NOT here to make me a better person.  Side note I hate when people say that.  I do not want my kids to struggle to better me.  They are here because genetically they were manufactured this way, on top of environmental crap and vaccines, and who knows what else, and truthfully, we do not know.  God allowed them to come to develop as such as their mom, I Will do what any mother would do, and that is raise them to the best of my ability.  They deserve no less than that.

Move Along Move Along

My mom used to love that song "Move Along" by the All American Rejects.  She would always ask me to turn the volume up, and we used the phrases in a lot of our emails, just saying to each other, move along, move along.

Speak to me, when all you got to keep is strong
Move along, move along like I know you do
And even when your hope is gone
Move along, move along just to make it through
Move along
Move along

This is kind of what is like as a mom of a child with needs.  You have to be strong; you have to keep working, even when you wake up exhausted, your body aches, you couldn't sleep the night before, and you think of the day ahead.  You pull in the driveway and silently say a prayer.  You wake up and think maybe this is the day they talk.  Hope can be sparse and yet you LIVE on hope.  Hope to a special needs mom is a like a hit to a heroin addict.  We have to have it. Hope comes in small things.  Somedays it is a word, a sound, a compliment, an interaction, a great email, even for me, it is watching my own students grow. That is hope.

The truth is my life and my kids' lives are separate.  Eventually, their lives will not be so intertwined.  My heart will not break as it is was me for my sons' struggles.  I am doing EVERYTHING in my power to help them out and make their lives easier.  I did not do this to them on purpose. I had no control over this ridiculous disorder. I would easily take it from them instead of me, but I am doing my best to teach and show and prepare.  My mom wrote in the journal she left me about how difficult her childhood was, and how she had hoped my childhood would be spared any pain. I wish she was here so I could tell her that pain is growth; pain is change; pain is progress.  It is not fair- it hurt so much, but in so many ways, I am so much better off than my peers.  My kids are learning life lessons, not by my choices, but they are.

These kids with Apraxia are amazing.  I look at my students today, and today I worked with 5 kids with Autism.  They are simply amazing, and the progress is astounding.  Sometimes I look at the kids and tear up.  I am so proud of each of them. 

You have to keep moving along to get to the final chapter.  We all want to read it.  We want to know the ending, but it may be that unwrapping the present a little each day will be enough, will suffice.  At the end, I know I make every decision, not with my own interest in mind, but my children, and the pain I carry for them.  The hurt, the aches, I take them on, in hopes that their lives are easier than mine. That's what a mom does.  We hold onto hope and move along each day, as best we can.

Coming out

My kids are so much more than apraxia, so much more.

5 words to describe Landon:  bright, hysterical, sweet, sensitive, affectionate

5 words to describe Logan:  crazy, daredevil, concerned, fun, and aware


Both brings many strengths into our home.  I watch the two of them play together and am so happy for that.  They take turns nicely, share toys, and help each other.  Yes, they also push or hit, but they are brothers.  They truly care about each other and look for each other if one is not there.  I am thankful for that.

Apraxia Awareness Day just passed.  It is only the 3rd Annual.  I sent an email out to all my work staff about the day and urged them to wear blue and white in support of this disorder, and reminded the staff that we do have 3 kids at Delaware diagnosed with CAS. Every time we have a meeting about one of those kids and I say X has a dx of apraxia of speech, the teacher has never heard of it. every.single.time.
Hopefully not next year.

Ironically, all the kids I have with CAS are super smart.  That's a good trait of this dx.

So I decided I will have to come out in some way.  I first formed a group where I could post videos, accomplishments, and posts, and not feel bad that I am rejoicing over a CV syllable.  I have a good group of people interested in our accomplishments.  Then the day came,  I put up a simple wear blue due to this day and I love two special little boys with this... and invited people to message me if they wanted in the group.  I got some nice messages.

Awareness is not bad.  I do want others to know my kids struggle AND work hard.  They do both.  They are AMAZING.  There are days no one talks at all and my heart breaks the whole day, begging for something, and then there are amazing days, with lots of speech.  This disorder is so up and down, that it could kill you.  I am finding more people in my situation and their kids are ok.  Are they 100% typical, no, but they make it ok, and that's my goal.  They don't need to be a huge sports star or win the essay contest at school. They need to be: happy, confident, and know they are loved.  That has always been my goal.

We don't need sympathy, just prayers.

Keepin on

Since that last post,  we have battled back.  Last weekend, I met with other moms of kids facing apraxia.  It was wonderful.  Our kids are each unique, but all of us do have kids with global apraxia and SPD, to varying degrees.  The other moms had older kids and my guy is still just 3.  One thing we talked a lot about was are our kids happy?  I can say with 100% certainty, that yes, Landon is very happy.  Logan is too.  Why are they happy?  I am not sure.  I think it's their disposition, they have a wonderful home, lots of love, and I do try to be patient with them.  The other thing I try to is not have their lives ruled with therapy.  I do a lot of work in context with them, but we have a lot of fun.  There are nights worse than others, but in general, we are positive, we keep it light, and I do praise for every little thing.  Landon loves praise.  He eats it up.  Logi is starting to get there too, puts a puzzle piece in, looks up for immediate reaction.  I am always willing to give it up.  They work hard.

I had to call the support teacher about the phone call I received last week.  And guess what, Landon had a better week.  He still cried walking in the big room where the climber was no more, but he gets over things quickly.  I received his progress report- 14 pages - yesterday, where he still continues to make progress.  The most progress is seen with his social skills and also his motor skills.  Speech is and will be the hardest part for him.  He is ingenius in how he communicates and he amazes me.

My friend Laura @ www.slpmommyofapraxia.com  just wrote about the fight we parents have to have.  Mostly we fight for people to see what we see, to see the smart kid, the potential.  That is a hard fight.  I do fight that.  I write in each email to the team that we maintain high expectations for LANDON, and Logan too, but less of a fight at 24 months of age.  We do not give up goals for them.  If Landon decided he wanted to become a doctor, a mayor, a public speaker even,  I will devise a plan to get us there.  There is no end in the fight, the push, and the love i have for my boys.  Apraxia or not, they will be all that they were meant to be.

And that is really what awareness is about-- understanding the struggle, but never giving up the dream.

just the mom

In the big world of special education, of services coordinators, special educators, therapists, goals, IEPs, sensory diets, and the like, who Am I but mom? I just got off the phone after an awful conversation with Landon's teacher.  His speech has not been progressing, but I have seen progress in other areas, such as kicking, climbing, with his peers, eating lots of new foods, staying with me, following rules, etc.  I wanted to check how he was doing.  She says he has regressed.  Basically she said he will make more progress next year, so what wait?? for 5 more months.  She was not friendly or nice about it.  "Nice chatting with you" she remarked.  I immediately texted back that she could have touched base with me anytime, not wanting for me to contact her, etc.  I said I know you are not the mother of a special needs child, but we work hard, we work tirelessly, and we are easily hurt.  I kill myself with Landon, it is not his fault at all and I tell him that all the time.  How insensitive could someone be.

I am not anybody but mom, but that is the somebody all of us should remember.  We can't treat kids like they are a number.   That's why I hate labels.  Oh, you know Alejandro, the autistic boy, the downs girl, etc.  That is what you hear.  It is sickening.  It happens too.  Oh, she is a 70 IQ, you can't expect much.  I want them all to know that I do NOT CARE, NOT one bit what Landon's scores say, or what they think they see.  What I see is a huge amount of potential, a career, a family, a happy life.  I won't rest for a minute till everyone else sees that, not even thinking about it.  It is very sad what special education is these days.  I hope to one day find a place where kids are seen for their potential, not their progress;  their smiles, not their voices; and most importantly, their determination, not some stupid number that means nothing.

so hard

What is hard is when you know.  I knew Landon had apraxia young.  I also thought by 18 months, there was a sensory piece involved.  I have known he was smart from very young.  I remember going to a play date with twin girls before Logi was born, so Landon was probably 17 months.  Landon was babbling dada the whole time we were there, and these girls really did not speak.  However, I knew there were no sensory issues, motor skills were great, nothing else, so I knew these kids would speak.  The next summer, we saw them again, and who was speaking in sentences and who wasn't. The kids are the same age.  The mother of the twin said to me, i am sure landon will talk early since he makes so many sounds.  I just smiled.  I already knew.

My neighbor has a just turned 3 year old.  At 2, he was not talking, and he started speech.  He had just a few words, but the words he had, he had. They never changed production and he was solid in them.  He also had amazing motor and play skills.  He was over today.  Guess who is not receiving speech anymore?  That boy.

It is hard because I knew all along.  I had really no idea it would be this severe or this difficult, but I knew.

God I pray that next year, Landon can be the boy speaking!

Significant progress

Almost a month ago, Landon had his Annual Review meeting, which is his yearly meeting to discuss progress/programs.  As I sat down at it, I was sort of annoyed, because his teachers were not there, but the support teacher was.  I kind of wanted someone who worked right with him to be there with me, for me.  As we began reviewing everything, I kept hearing the words, "significant progress."  Landon has made significant progress in this, in that, in everything.  Everything EXCEPT speech.  But still, progress is progress.  I sat there and they asked me what I thought, and all I could really say was "speech is everything to me.  Without speech, I don't know where he can go, what he can do. He has to develop speech."  Someone said sometimes he is stubborn and does not want to say something.  I immediately stood up for my son, and said, he wants to; he just can't.  I get very defensive about my baby.  I kept thinking what is significant progress to me, do I use those words at school with kids who are still functioning years behind, and maybe I do.  I do know that since starting this journey, I am very much more understanding and patient with my students, parents, stupid tests I have to give.  I have sat at meetings and said to a parent, "This number is really nothing, but I have to tell you xyz."  My favorite boy, Alejandro was nonverbal in K.  He is now speaking in long sentences.  He is still on the spectrum.  He is also a joy.  I would be so proud if he was my son.  I love him so much.  He is up for re-eval.  He won't do well on the testing because he doesn't always think in a standardized way; he just doesn't.  He also gets off topic all the time.  He still has made significant progress.  For me, I have been on this road and through this.  I had Landon signed up for a typical preschool, then maybe ok, maybe he will need teacher services, ok he is going to a special needs prechool, finally, for next year, he will have a 1:1 aide.  It is a process.  Maybe I have made significant progress in accepting this, but it does not feel like it. Significant progress for me is no more IEP. That is too lofty of a goal.  I just want him to talk.  I could care less about anything else. 
So that is that, significant progress.  I am proud of him, and hopefully the next big progress is speech.  Iep finalized. Summer school starts July 6 and he is going all day next year to preschool. He will be exhausted.  At these meetings and in dealing with teachers, etc, best thing to remember is: You are the expert on your child.  I know Landon more than anyone, and no one will tell me differently.  He has made nice progress and he is capable of so much.  Nobody better sell him short.

The voice

I am not referring to America's hit tv show, but instead, my voice, the one I have been blessed with at an early age, and am using currently to advocate for my boys.

I am a speech pathologist.  I love to talk.  I love to be with others and socialize.  I can assess someone's speech on the spot.  That's my thing.

My house is very quiet.  There is a lot of laughter, but it is not a talkative home.  I can drive home, talking to my boys, and hear nothing really.  I have to keep talking.

I am constantly on my husband, telling him to use longer sentences, to be engaging them more in conversation, even when no one can respond.

It doesn't matter.

We have to be there to model and teach our kids.

Twice this week, I had to contact Landon's school/teachers for concerns.  I really am not a big complainer, and I am very happy with Landon's program, but he can't speak up for himself, so I have to.

I emailed the SLP and said "Please understand-- I am my son's voice.  I have to stand up for him.  If I don't who will?  and then he will be lost."

Until my boys have words to speak for themselves,  I am on top of EVERYTHING, every aspect, and I won't rest as long as I am alive to do it.  There is not time to waste trying to please everyone.  My kids are my #1.



Have a wonderful weekend.

The sometimes this sucks post

I have a few feelings about having both my boys being "delayed."  One is that it would completely break my heart into a million pieces for Landon if Logan was talking now as expected.  I would feel so sad for Landon who is so aware and working so hard.  The other thought is wow that would be so much easier, what a nice language model for Landon, and of course, I would not want Logi to struggle.  They do get each other though.  This is our "normal."  I am not ashamed of them and they are not of each other.  The boys are always hugging and kissing and loving on each other.  They are blessed.

Look at Landon's therapy schedule:
 

Mon

Private speech 720-750Am

OT 9:00-9:39

Speech 9:30-10:00

 

Tuesday

Music therapy 8:00-8:30

9:00-9:30 Speech

10:30- OT

11:30 PT

 

Wednesday

Private Speech 720-750

 

Thursday

Music tx 745-815

Speech 10:00-10:30

PT 11:00-11:30

Friday

Speech 9:00-9:30

OT 11:00-11:30

 

 

I get overwhelmed looking at it, then think how proud I am of him for trying so hard. 

 

Logan's schedule is such

Tues: 8:00-8:30 PT

8:30-9:00 Speech

 

Wednesday

7:45-8:15 teacher

8:30-9:00 speech

3:00-3:30- ot

 

Thurs:

8:00-8:30 PT

 

Friday:

2:45-3:15 OT

 

I wish I could afford more speech for him, but Iwill be home with him this summer and I can do it.  Logan's ability to follow directions is so much more impaired than Landon's is/was.  He understands things the louder I speak, so maybe the fluid in his ears is impacting him.  He gets an ABR/tubes in ear most likely on June 9th.  I was able to say "Where is Landon?" and he is off looking for him. "let's go outside" off he went.  Yesterday I said "give this to Daddy." and he did, so there is some understanding.  Pointing is hard for him. He is now pointing more often for food, especially Kix.  He really likes to be with the other kids.

 

One weird thing I have been thinking of is the term "inclusive."  At the beginning, of the year, for Landon's school, we had to make a thing saying what we want for Landon as an adult, who do we want him to be.  I put a lot down, but the main thing I said was "happy and confident in whoever he is."  I saw some other kid in his class; the mother put down inclusive.  She wants him to be inclusive and then I thought she is being inclusive now by "letting" her kid in classes with kids like my kid.  I thought maybe people think this is so great, to be with special needs kid.  Look, guys, my little man is inclusive. He has friends in wheelchairs, w/ down syndrome, and there is a book in his class who uses an Ipad to say his name at circle time.  I don't know why that bothers me.  I don't want my babies to be the kids who make these kids more well rounded, or feel like we offer something to them they can't find in their own homes, since all their kids are typical. Boo. Maybe bad mood.  To me, my kids are just like anyone else.  They don't need to be "included" for the sake of it.  All kids, anywhere, just need acceptance. All people should be inclusive without being taught, but we know that is not the case.

 

We march on.

The I love them so much post

Becoming a mom is amazing.  It's amazing to actually feel your heart walking around outside your body.  That's what I always tell people.  You ache and are proud and have so much joy and sadness from a person who is not you, who does things you cannot control, but yet, it feels like it is you.  When my kids can't speak, I feel like it is me, the pain they feel, I feel.  That's why I don't sleep as much and worry constantly; it's love.  I love these two boys more than anything.  I would do ANYTHING for them.  Every mother says that, but I really do mean it.  I would do anything for them.  When I lost my mom, I just searched for a love to fill that void.  I have been thinking a lot about that this week as I am home with my boys, even my husband, all week.  We are very blessed.  We have a nice home, so many toys, cars that are reliable, we have access to many activities, and we have good family support.  I had a lot of fun with my boys.  Logan is turning into a big cuddler.  He has always been more independent, but he has been wanting to cuddle and rock for 20 minutes or so when he first wakes up.  I love that. Landon has been doing that forever and still is in my arms often, but Logi is such a sweet cuddler and I am loving this.  I love their unique personalities, their laughs, the fun they bring.  I look at Landon and I have spent so much time looking at him this week, and man, is he smart.  He is such a smart boy.  He is going to do amazing things in his life, and no one will be prouder than me, no one. I will be looking on with tears in my eyes each step of the way.  I can see it, I can almost touch it.  The first time he is able to speak a phrase, a sentence, speak to a peer, speak in front of a class, read on the announcements, etc.  I will be there, and I will know what it took to get him there.  That is something no one can ever take away from me.  And then there is Logan, he is such a social guy.  He wants to do whatever Landon does.  He won't do any easy puzzles, only the ones Landon touches.  He eats whatever Landon eats.  He is like his little shadow.  He does it with other kids too.  He is a little lover.  He is very silly.  He is going to be a popular kid.  Logan will always have a lot of friends and admirers.  I will remember him as this crazy, happy, silly, perfect baby, that I am so glad I became unexpectedly pregnant with, because he has helped Landon, and Landon has helped him, and together they are unstoppable.  The love a mother feels cannot be explained.  I think of my mom leaving us at ages 23, 21, and 19, and I know that wasn't enough time to her.  What is enough time?  My sister and I discussed this this week, and I said and I meant more than this, but I really want to live to see my kids speak, and I do, I really, really do.  My sister said she would like to live until the kids turn 30 at least. My mom wanted to see us graduate high school; she did.  There is never enough time.  We are promised only this day.  I know this week, I have made the most of them.

It's not your normal, but it is ours

Landon has been doing great.  I see improvements in everything but speech.  I will be glad for the improvements he is making everywhere.  He has just learned to jump down off something and even can jump onto something now.  This is great.  He was jumping on and off a stage the other day and off curbs etc.  He can jump very far when he leaps now.  so proud of him for that.  He is also learning to take his shoes off.  I mentioned that I wanted it worked out, and he is.  He has been able to take them off by himself if I loosen them a little bit.  Landon does not always initiate these skills, but once he practices them, he is so proud to get it.  He beams when he takes his shoes off.

We went to Target and the zoo yesterday morning.  I usually hate taking Landon to Target.  It is the only store I won't take him to, just not good in there, but he did great.  We walked in and I reminded him we were not going to look at the door, just keep walking.  We waved goodbye to the doors and moved on.  He stayed with me, helped put everything in the cart, and even looked at the toys.  He shows no interest in picking out a toy, but he did look and identified some when I asked.  I will take it.  I put his favorite book from school in the cart for his Easter basket and was so happy to find it.  Then we went to the zoo.  Usually Landon runs right in to the turtles and bypasses everything on the way.  Today I told him we were going to look at each exhibit, then get to the turtles.  He did awesome.  He was great looking at the ducks, and for the most part, stayed with me.  I got in the car and said to Alex, that they were really good.  He said all kids have bad days, speaking or not, but we hold them to high expectations, and that we do.  I thought I had to do a lot of verbal reminding and prompting, but I think that is ok.  It's not maybe what you have to do, but I do.

Today is Easter.  I have been talking up this silly bunny, and we colored eggs a couple times to make it easier to try, and we did 4 eggs each time. They tolerated it.  There were no tears like last year.  Neither were thrilled, but Landon even put some stickers on.  The basket.... Logan is still sleeping and it is 8am, so Landon and I went looking for the basket at 7am.  I did yes/no questions, with him, asking if this is a basket, or is a basket here?  He was able to nod his head yes when he saw it, but then did not want to look in.  He closed his eyes and hit me.  Of course Alex is ready with the camera and I was hit.  I told Landon if you look in, you may find something you like.  I told him I will wait until he is ready to look in the basket.  A minute went by, and he opened his eyes, and saw the book he loves.  He pulled it out, loved it, shook the eggs, and at least looked at and took out everything, with my support.

It is not your normal, but this surely is mine.

Happy Easter all.

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..

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.

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,

MOTHERHOOD IS SO DAMN HARD.


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...

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.

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.

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!

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.

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.

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!!