It’s been a while.

Hello all.  I just wanted to update you all on what’s been going on.  I still feel strongly at times that everything is okay, or at least that everything will be okay at some point and time.  Then, there are times, where I’m not sure how things really are.  It’s hard to gauge how Dylan is doing, because he is a pretty well-behaved boy at home.  Sure, he’s high energy at times, but what little boy (or girl for that matter) isn’t? One-on-one, he’s a dream.  I can do puzzles with him, we play games.  He LOVES to learn, absolutely loves it.  His mind is like a little sponge, it’s incredible what he can understand and what he can retain.  It is so fun just even talking to him because he seriously amazes me each and every day.

Before the holidays, I met with his teachers and received his quarterly evaluations.  Overall, there have been improvements.  They would like to discharge him from speech completely, because they feel his time would be better spent in the classroom where his behavior can be a challenge at times.  When reading one these reports, it’s honestly so hard not to focus on the negative.  It really is.  The daily feedback I get from his teacher is inconsistent, because Dylan is inconsistent.  He has really great days.  Then he has the days where he doesn’t listen, throws toys and pushes his friends.  I sometimes wonder who this other kid is, because I just don’t ever get to see him.  The classroom environment, the social pressures, dynamics and expectations there are very different then they are at home.  Is he perfect? Of course not, no one is.  Yet, I never get to see this other side of him, which confuses me even more.

I was home with Dylan for 17 days for the holidays.  In that time, he did have more meltdowns then usual.  i could tell that on the days where I had a very structured day planned out, things went very smoothly.  For this reason, I tried my best to do this as much as possible. Since he has been back at school, he has “regressed” in the words of his teacher.  He is not sitting still during circle time, and he is acting out.  In recent weeks, I have been trying to plan out our summer, figuring out what weeks they’ll be in camp, what weeks they’ll be home with me.  Turns out there will be none of this.  I was planning to send him to a farm for summer camp, but his teacher thinks he needs more structure . She’s worried that being in environment like that could set him back for the big K.  It’s hard to remember that what I think would be best for him, because it’s what I would want to do, and that its not always what is actually best for him.  It’s so hard to keep reminding myself of this…that he’s just not the typical kid that I imagine him to be.

So there we have it.  I have a CPSE meeting in a few weeks to discuss changes to his IEP.  Let’s hope I make it through this one without shedding too many tears.

Autism always comes with friends.

This is what our advocate told us once.  It rings true in the sense that Dylan is not simply autistic.  He has a speech delay, and very low muscle tone which affects him in more ways then I ever expected.  Now I’m afraid we’ve made another “friend” in ADHD.

Now, I know it’s too soon to tell, he is too young.  At open school night, none of his teachers or therapists want to jump to this conclusion, but they all seemed to make it sound like his energy level was problematic.  I’ve had a gut wrenching feeling that this whole autistic thing is not the only thing we’re meant to deal with.  I am seeing it right at this moment, as I type on this computer and he just cannot keep his body still.  Not even for one second.  Before we had a diagnosis, I can recall him inability to sit still at the ENT when getting his hearing test.  I jokingly asked the audiologist when her kids grew out of this phase.  She replied that they never were like this.

It’s frustrating, and I know it’s not his fault, but I just need to know how to quiet him down, how to get his body to just calm down.  I almost wish there was something going on at home, that there was some explanation for his behavior…but there’s not.  No explanation other than what I am dreading is true.

I want to focus on the good, I really do.  They are always telling me how smart he is, how he is great to work with because he aims to please and likes being rewarded.  But then I get notes like the one today, and nothing else really matters. It just confirms my fears and adds new ones like what other friends are going to show up at our front door?

Sensory diet.

I have been on a lot of diets in my life, but never a sensory diet.  What is a sensory diet you may ask? From sensory smart parents…

Just as your child needs food throughout the course of the day, he needs sensory input, and opportunities for getting away from stimulation, spread out over the whole day. A “sensory diet” (a term coined by OT Patricia Wilbarger) is a carefully designed, personalized activity plan that provides the sensory input a person needs to stay focused and organized throughout the day.

Each child has a unique set of sensory needs. Generally, a child whose nervous system is causing her to be hyperactive needs more calming input, while the child who is more underactive or sluggish needs more arousing input.

Yesterday, we received a letter that they wanted to put Dylan on a sensory diet at school.  One thing they proposed doing, was to have him sit in a cube chair and on a special mat during circle time.  This is a way to calm him down, or as we like to say, slow his engine down, so that he is less scattered and more focused in school.  He is also a danger to himself because he is constantly moving and falling off chairs.  Modifying something as simple as the type of chair he sits in, might really be a great help to him.

I still have my days where I look at him, I talk to him and just think it can’t be.  They are wrong.  I don’t know if this is because he is improving from getting the support and help he needs, or simply because this is the fuzzy line we walk when dealing with high functioning autism.  Perhaps it’s a combination of both.  I hesitate to write this, because I do believe Dylan is autistic.  It is just funny how one day I can think everything is totally normal, and the next I am getting a letter sent home that maybe it’s not.

Goodbye summer, hello fall.

Goodbye summer…

Well, it looks like the summer is over and I haven’t updated since July.  First, I will start off by saying we had an great summer.  A sure sign of that is just how fast it flew by.  It was filled with so much fun and we made lots of memories.  I am sad it is over, but I am also looking forward to what the fall has to bring.

hello fall

Dylan has started at his new school, and I love it already.  I was terrified of the school bus, and whether he would be happy there.  However, you can tell they really have it together there.  He has an entire team of people that work with him on a daily basis.  To top it off, any of his teachers and therapists I have met so far have been wonderful.  He is happy, so I am happy.  I am really looking forward to the progress he will be making there this year.

An autistic kind of day.

Today, I took Dylan for his 4-year-old well visit.  I used to look forward to these appointments.  I loved finding out how much he has grown, and what percentile he is in.  Today, I had to catch the doctor up on what has been going on, something which is never pleasant for me.  This visit also happened to be the first time I was not excited to fill out the developmental milestone questionnaire.  I used to happily fill these out, but today, I had to hold back tears as my third “no” was circled much too quickly.   This coupled with the fact that Dylan just could not sit still nor listen for one second…I just wanted to run away.

Some days, I honestly feel like everything is just fine.  It’s so easy to look at Dylan, and think that he is just like any other boy.  But that adorable little face, can certainly be deceiving.  Lately, I feel like I am talking to a wall.  I am having a hard time getting through to him and connecting with him.  His anxiety and OCD has gotten worse.  More and more, I find him playing alone in his classroom at school, while all the other children are playing with each other.

Today, feels like an autistic kind of day.

These are the days that throw me off, the ones that make me worry.  On these days, the weight of every doctor visit, therapy session and evaluation weighs heavily on my shoulders.  Life is beautiful, but it is so damn hard.  Why does it have to be even harder for him? I just wish I could make it go away, like a boo boo, with a simple kiss.  But I can’t…and that hurts me more than it will ever hurt him.

 

 

“The days are long, but the years are short.”

17 days. That’s how long I was home with the kids.

It is also happens to be my excuse for not writing sooner. For this working mom, 17 days seemed like an awful long time to be home with the kids, but it really did pass by in the blink of an eye.

Home is a relative term though, since most of our time was spent outside of it. During this time we went away to Lancaster, PA, had family visit from out-of-town, celebrated Dylan’s birthday (and International Mud Day), visited farms, went to the beach, to the sprinkler park, the library, the aquarium, had playdates and even managed to fit in extra books, extra family time and extra snuggling. Yeah…it was a great 17 days.

Relaxing at the beach.

Exploring!

International Mud Day

Fun at the amusement park.

I really am thankful for the job I have, because I’ve realized that with everything going on that 1) I would’ve probably had to quit and become a stay-at-home mom to fit everything in and 2) I get to spend extra time with the kids since my work isn’t a typical 9 to 5. And as much as I loved every moment in the days that have past, I was so excited to get back to work, because I love what I do, and I truly missed it. Can you believe that?

Work has changed a bit now though that life has changed. There is a lot less work and lot more back and forth. There always seems to be a PT or OT session scheduled, and if not, some sort of appointment with the doctor. This will hopefully get better in the fall if the school district allows Dylan to enter a program. He would be able to go to a preschool where he can get all of his related services in one place. This would make it so much easier on Dylan, not to mention, for this mommy.

A sigh of relief.

Today was moving up day for the preschool our kids attend.  The preschool rented a large high school in our area with a big auditorium to accommodate all the paparazzi.  The kids have been practicing their songs for weeks, and I too have been preparing Dylan. I must admit that I was nervous.  I never used to think twice about these sort of things, but now that I have a better understanding of how his mind works, I didn’t think he’d be able to handle it.  Being on stage can be overwhelming, even for the most neurotypical child.  I kept thinking that the unfamiliarity of the situation and being blinded by the bright lights would be too tough for him.  I was afraid that allowing him to take part in the ceremony would unnecessarily traumatize him.

I am happy to say, that I couldn’t have been more wrong.

I suppose I forget that although this is all new to me, he has been adapting to these sort of situations his entire life.  Dylan did absolutely wonderfully! He looked for us as soon as he hit the stage, and his face just lit up when he spotted his daddy.  He had a hard time staying still, but I think it was due to the fact that he really (REALLY) had to go to the bathroom.  So in actuality, I am proud of him for holding it in the entire time and not having an accident right there on the stage more than anything else!   He sang beautifully, and it was music to my ears.  He made me so, so proud…I can’t even describe it.  With just a few songs, he restored my faith in his future, the one I had dreamed he might have before we ever met.

Today, we also completed the last of his evaluations, at least for the time being.  I took him to a pediatric ophthalmologist to see if he required vision therapy.  The PT had noted some issues with tracking, and suggested we follow up.  For the first time in what seems like forever, we received some good news.  I expected to hear he needed glasses, or tons of therapy, because honestly this the type of things I’ve been hearing lately.  But luckily, most things seem great with his eyes.  The issue he does have, seems to be directly related to having low muscle tone.  The doctor thinks that this might be helped by some exercises we can do at home along with OT.  Finally, FINALLY, some good news.

Overall, we had a wonderful day. The grandparents all came with us to ceremony, and we even got to celebrate his birthday a little early.  A fitting end to the day, for our little superhero.

 

Everyone has a little superhero in them.

Knowing when to ask for help.

The other day, like most days, I was thinking about this little situation we have found ourselves in.  I’d like to think I’ve quickly adapted to this new world.  I’ve read books and endless articles.  I’ve spoken with countless other special needs moms, joined support groups and have begun to educate myself on what can be done now that we are unexpectedly here.  I spend nearly every ‘free’ waking moment thinking about our plan of action and what we are to do next.  I am more driven and motivated about this than anything I’ve ever worked for in my entire lifetime.

The reason for this is simple:  I love my son (and daughter) more fiercely than anything else in this world.  More than I ever expected I could or would.

Today, I found out our next CPSE (committee for preschool education) meeting will be coming up in 3 short weeks.  I am terrified.  This meeting will set the course for Dylan’s next year, an extremely crucial year in my opinion, his last before kindergarten.  I am going to ask that he be put in a special school, where he can go to preschool and receive all of his related services.  Right now, this includes his much needed speech and PT services.  As I had unfortunately predicted, he barely didn’t qualify for OT based on his evaluation score.  However, I know he needs it, and I am prepared to fight for it.

As much as I like to think I have a handle on things and we are moving in the right direction, I know my limitations.  CPSE meetings can be extremely overwhelming.  They go by very quickly, as does all the paperwork they ask you to sign, and all the decisions you are forced to make.  Even for a seasoned parent, I would imagine it is always difficult when what you are fighting for is your heart…literally. We are so emotionally invested in the entire process, and in our children, that it is hard to take a step back and look at the situation at hand in any other way.

That is why I’ve decided I need help.

I’ve hired a special needs advocate to help me get the job done, to help me understand what he needs and how to get it.  I think having her by my side is going to give us exactly what we need, a real plan of action.  In addition to the above services, we are going to ask for group play therapy and a behaviorist, three times a week in the home.  The  behaviorist would work with Dylan twice a week for an hour.  For the third visit, we would receive parent training.  Having her by my side, has definitely put me at (a bit of) ease.  For the first time, I won’t have to sit there crying trying to choke out the words.  Someone will be able to do this for me, and that alone is priceless.

 

 

A member of the club.

When Dylan was only about a month old, my husband and I went out to a nice restaurant for the first time with the baby in tow.  While there, we met another couple out for the first time, with a baby who appeared to be about the same age.   They said they were happy that they weren’t the only ones with a baby in what would be considered a ‘grownup’ restaurant.  We exchanged a few words about our experiences as new parents, and we never saw them again.  That day, I realized I was part of a new club, the ‘mom club’.

I became an instantaneous member the day Dylan was born.  As a member of the club, I am lucky enough to know what unconditional love is.  I also know what it means to be truly exhausted, filthy, and frustrated.  Soon after this, we became the members of the ‘2 under 2’ club.  I will spare you the details of what this club entails, just in case anyone reading this is looking to join.  But do you get where I am going with this? Induction into these clubs, usually means there is some sort of ‘fee’ associated with it.    Of course, the privileges of these memberships far outweigh any of the dues, such as losing your ability to go to the bathroom or take a shower in private ever again…or at least until they have grown a little more.  I hope.

We are members of a new club now, the autism community.  I can honestly say, I have never met such an amazing group of individuals in my life.  This club is chock full of people who seem so genuine and altruistic.  By the way, this group isn’t limited to just parents of autistic individuals, but an entire community made up of caring teachers, therapists and professionals.  It makes you believe that there really IS good around us, a refreshing change from the judgmental mommy wars that are constantly erupting around me.    Everyone here just seems so…nice.

 

On Saturday we went to a local library program for children with special needs on the spectrum.  I was sort of nervous going there for the first time.  It was like admitting defeat, like this is really happening, and there is nothing I can do to stop any of it from coming true.  It is admitting that we belong there, although I still couldn’t help but feel at times that we really didn’t.  Walking in, I felt like I had a giant sign on my forehead that said “help me, I’m lost” because everyone there was so quick to open up and offer there advice, guidance and support.  Or perhaps it was because we were new, and they just figured as much.  Whatever the reason, I am so thankful for all of it.  It feels good to know that we are not alone, and part of a very special club.

 

 

 

 

Next stop, Holland.

Someone shared this with me, and I thought it was just perfect.  No better way to describe it….

 

Welcome to Holland. 

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy,  you may never be free to enjoy the very special, the very lovely things… about Holland.

~ by Emily Perl Kingsley ~ Copyright 1987 ~ All rights reserved~