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.

letter

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

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

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.

 

 

Home run.

The dreaded CPSE meeting is over!  Last week, we had a meeting to discuss services for the upcoming school year.  I am happy to report that Dylan will be entering a full day program.  There, he will receive speech, PT, OT and therapy sessions.  We will also receive parent training once a week for an hour in our home, something we both desperately need.

I’ve only been to a few CPSE meetings, but this was by far the best one.  All of the evaluations and recommendations were finally complete.  Dylan’s speech therapist was there and this helped tremendously since she has really gotten to know him and understands his needs best.  Danielle, the special needs advocate, did an amazing job in helping us decide on goals for his IEP.  

I couldn’t be happier and more thankful for this wonderful news! As much as I love him just as he is now, I am so excited to see the changes and improvements he will make over the next year, particularly in the area of his gross and fine motor delays.  Overall, I couldn’t be more pleased.