Wednesday, May 27, 2015

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. 

Tuesday, May 26, 2015

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.


Monday, May 25, 2015

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.

Wednesday, May 20, 2015

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.

Sunday, May 17, 2015

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.

Saturday, May 9, 2015

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 @  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.