Thursday, April 28, 2016

Nearly Exhausted

Once a month, I get an alert in my inbox.  Like clockwork, the company that we get Ronan's diapering supplies reminds me that it's almost time to re-order his supplies.  Since life is a tad bit busy for me, I appreciate that reminder.  

As usual, since it's almost time to submit that order, the email was sitting in my inbox.  As usual, though, I forgot to check my email.  I didn't miss out on placing the order because I got a phone call reminder about it this morning:

"Good morning!" a cheerful soul bellowed.  "I'm calling about Ronan's diapering supplies.  It looks like he's due for his next shipment.  Would you like me to push the order through?"


It was only 9:15 a.m. and way too early for me to be as chipper, especially on the phone and especially with a stranger.  Taken aback at how happy this person was made me smile though.  I wasn't about to be the one to squash her happiness, so I gleefully replied, "Oh, yes, please!  I was just thinking I should check to see if that email reminder had been sent. It's been just about a month since you all sent the last one, hasn't it?"

"Yes, ma'am.  It has," she concurred.  

"Well, then.  I'm glad you called," I said still smiling.

"So, same address, same phone number, same information as usual?" the representative inquired.

"That's right.  Everything is the same," I answered.

"Good!  So has Ronan nearly exhausted the supply we sent last month?" she inquired.

Nearly exhausted, like his mother? I wondered.

"Yep!" I said.

"Great!  Let's set this order to go through for him now," she said.

"Perfect!  Thank you," I added.

After saying good-bye and hanging up, I smiled once more.  What a great attitude that gal had.  She did her job well, and I could tell she was not just happy in her position but proud of the work she was doing.  I do my job well (most of the time), but I don't always have the best attitude.  I can tell, and those around me can also tell, too.  I know I need to work on that, so I mentally added Have a better attitude like the diapering service rep's attitude to my ever-growing To Do list.  Then I set my attention back on Ronan.  

I hadn't planned on driving Ronan to his appointment today, his therapist was going to, but she had a change in plans.  That meant that I now had a change in plans - my own. Instead of sauntering out for the one free hour I thought I'd have to myself this week, I had to scramble to get both of us ready to go.  Racing out the door as usual, I caught myself grumbling under my breath.

Ugh.  This is so hard.  Why does it feel like things are so hard all of the time?  This week has been insane.  Can't something go right for once, especially this week?  

Then it started to pour.  

Then, when we got to therapy, Ronan wouldn't get out of the car.  

Then, he shut down.  

Nothing worked to get him out of the car.  No redirecting.  No amount of encouragement.  No promises of if you do this (therapy), then you get to do that (free choice).  He would not budge at all.  Trying to keep myself dry from the rain that kept on raining down, I could feel what little positivity I had left drain right out of my body.  

Already having dealt with a 40-minute meltdown/stand off in a parking lot earlier in the week, I threw in the towel.  Stick a fork in me, Ronan.  Mom's done.  

I wasn't nearly exhausted in that moment, I was completely exhausted.  

I don't like that feeling.  It's a sad, depressing, horrible, and awful feeling.  Since I don't like to be stuck in that sad, depressing, horrible and awful place for too long, I rallied. Ronan rallied also.  

We left the therapy clinic and drove further into town.  I had to go grocery shopping.  That meant that Ronan had to go grocery shopping as well.  I didn't expect him to want to go, but the kid surprised the heck out of me.  Not only did he make it to the grocery store, then into the grocery store, then through the grocery store, and then all the way home from the grocery store, but he did all of that with zero incidents.  


Zero incidents!  

Wahoo!!!!!

That kind of success isn't rare, but after the very long, tiring, and frustrating week we've had, that success helped refill my soul with hope.  I desperately needed that. 
Some people thinking I'm an always-hopeful-kinda-gal.  Some days, and some weeks - like this one, I am not.  Thankfully, things s-l-o-w-l-y seem to be turning around for the better.  I'm glad for that.  I know those around me will be glad for that, too. 

xo, Cat


Tuesday, April 26, 2016

Knotted

Realizing that I was a day behind in saying the Mary Undoer of Knots Novena, I promised myself when I woke up this morning that I would catch up with the prayers today.  Before I had the chance to do that, my 9-year old showed me her weaving loom.  I was floored.  With the prayer request I am saying during this Novena, I don't think it was a coincidence that Izzy showed it to me...

When we got in the car this morning, Izzy picked up the loom and said, "Hey, Mom.  Do you want to see what I've done?" 

Expecting to see the bands lined up and ready to be woven together, I said, "Sure, honey."

Picking up the loom and turning it so that I could see it in the rear view mirror, my jaw dropped.

"Izzy!  Did you just do that?  They were all lined up just a minute ago!" I asked.

"Yeah," she confidently answered.  "It was almost ready (to be a pot holder), but then I twisted a few and then moved a few, too.  Do you like it?"

"I don't just like it. I LOVE it!" I told her.

She beamed.  Izzy is like me.  She likes to hear that she's on the right path.  She likes to know that others see her hard work and appreciate it.  She likes to get things done right, but doesn't like to try, try again, even thought she knows that's sometimes how things finally get done.  

I can't remember if it was for her birthday or for Christmas that Izzy got that weaving loom to make pot holders.  Whenever it was, it was awhile ago.  Even though she's had it for long time now, she's yet to make a pot holder.  She's tried a few times, but she's met frustration at each of those attempts.  Fiona has offered to help her, so hopefully Izzy will be able to enjoy the activity instead of walking away from it likes she's been doing.  

Asking her if I could please take a picture of the magnificent work she'd done, she said yes.  She added, "You can share it with your friends if you'd like to." 

Oh, sweet child, I would be thrilled to.
Knotted
  Created by Izzy
After I took a picture of Izzy's artwork, I finally caught up with the Novena.  I won't go into details of what my personal prayer request is, but seeing the tangled bands so beautifully displayed on Izzy's loom reminded me that knots are not permanent.  They can work themselves out, sometimes in unexpected and creative ways.  

I kept the loom in the kitchen windowsill so that I could see it during the day.  I also emailed the Novena prayers to myself.  That way, I can remember to say the prayer first thing tomorrow morning until the nine days are over.  As I pray, I'm going to add being thankful for Izzy's spunky personality.  That spunky trait has gotten Izzy in trouble in the past, but not this time.  It showed me how patient, creative, and talented she can be.  

With how busy my family is, and with five kids underfoot we really are so very busy, it's nice to slow down and to appreciate simple beauty.  You know what's even better?  Seeing that that simple beauty came from a child, a child who happens to be mine.  

xo, Cat

Friday, April 22, 2016

One of the Happiest

I was reminded of this post after hearing what Ronan's big sister said in class a few weeks ago.  

A few weeks ago after asking Fiona how her school day was, she said, "Mom.  It was the best day!"  

Thinking she was exaggerating, I said, "Oh, really?  Why was it so good?"

"I got to talk about Ronan today!  It was so awesome."  Beaming as she recalled the event, I flashed Fiona a quick smile and asked for more details.  

"Well, we were in class and were asked to share when we were the happiest.  When it was my turn..."

My mind wandered for a second.  I imagined Fiona would tell her classmates about the surprise trip we took the kids on last year, or when she got a new-to-her-iPhone, or about when her team won a volleyball game.

"...and they were all really surprised!" she said excitedly.

"I'm sorry, what?  What did you tell them?" I asked.

"Mom, you remember that day, it was the day that Ronan spoke a whole sentence!  That was the best day ever," Fiona said proudly. 

I looked at her.  Was she serious?  In all of her 14 years, out of everything she's gotten to do, out of every gift she's ever received, out of every day she's ever lived, that moment made her the happiest?  I couldn't believe it.  

"Really?  Like really, really...that day was the happiest day you've ever had in your whole life?" I asked.

Fiona replied excitedly, "Mom, of course!  Ronan had such a tough morning, but he made it better.  And not just for himself; he made it better for all of us!" 

There was no arguing with that.    

That morning, Ronan had said a whole sentence.  Blurting it out had surprised each of us and had brought happy cheers.  It was a day to rejoice.  It was a day to remember.  Fiona remembers it as the happiest day she's ever experienced.  

I was thrilled to know that one of Ronan's milestones had impacted his sister so deeply.  I was proud to hear that she thought that memory so important that she had to share with her peers and teacher at school.  This week, during parent-teacher conferences, I got to hear that story again.  But this time, it was Fiona's teacher who retold it.  

The teacher shared the story of Fiona sharing Ronan's sentence with the class.  I could tell that the teacher was impressed with Fiona's choice to share that event.  It wasn't a new pair of shoes, or going out with friends, or getting a gift that made my child the happiest.  It was her brother.  It was his accomplishment, and it was a major breakthrough in language that made Fiona smile from ear-to-ear.  Hearing that story made me smile again.  It made me count my blessings.  And it made me cry happy tears, too.  
Some of this parenting can be tough, but there are so many reasons to keep going.  To fight through the tough days.  To work through the exhaustion.  To push through the pain.  That's because good days exist.  They follow bad ones that creep in.  

Good days are remembered long after that day has ended.  

Hearing that my daughter recognized that her brother's happiness impacted her own happiness blew me away.  The day that she told me that story was a good day.  Hearing the story repeated by her teacher made yesterday a good day, too.  I've had a difficult week this week, but yesterday was one of the happiest days I've had in awhile.  Here's to more of them...for all of us.  

xo, Cat








Monday, April 18, 2016

In My Arms

I've shared before that it's been difficult for us to get to Mass as a family.  It's even harder to do that when my husband is on a business trip that runs through the weekend.  I'm grateful when I can ask a friend to watch Ronan so that I can get the typical siblings to church on those weekends, but I feel a twinge of guilt leaving him at home.  

I could have asked a friend to watch Ronan yesterday, but I decided to try to get all the kids to the late Mass on my own.  Izzy wasn't so sure it was going to be a great idea.  "Mom, don't you think we should do Mass at home?  You know, because...after last night?"  

Ronan had been up in the middle of the night.  Wide awake.  Loud.  Happy.  Laughing.  For hours.  With how long he'd been up Saturday night, we knew that Sunday was going to be a long day.  Even knowing that, I reminded Izzy that before we resort to watching Mass on the computer, we had to at least try to get to actual Mass at our church.  She remained skeptical but got herself ready to go while I made sure that Ronan's backpack was stocked with snacks, diapers and a change of clothes. 

It's always a mad dash to get all five out the door, but we did it and got to Church fairly close to being on time.  On the way to Mass I looked in the rear view mirror.  Ronan yawned.  Oh, I'm sure you're exhausted, buddy, I thought.  He yawned one more time while we were pulling into the parking spot.  In that moment, I wondered if I'd made a mistake bringing Ronan.  When Ronan willingly got out of the car without putting up a fight, I put my worrying aside.  

The processional song had just started, so we slipped into a pew toward the back and got ourselves settled.  I had carried Ronan in, but as Mass continued, he made no indication that he wanted to stand on his own.  I didn't mind.  Ronan isn't a big fan of hugs or snuggling for too long, so holding him in my arms a few minutes longer was heavenly.    

The last time we went to Mass, Ronan made it to the Homily before Izzy and I took him to the narthex.  There, we kept him as quiet and happy as we could without drawing too much attention to us.  That's sometimes hard to do, but this little sister has a way of keeping Ronan focused.  Since she'd been so helpful in the past, I promised Izzy that if I Ronan was unable to stay in the sanctuary for the entire Mass, she'd get to help again.  

Yesterday, we never had to leave the pew.  Right before the First Reading, Ronan fell asleep in my arms.  He stayed asleep for 30 minutes.  When the kids looked over at him, they were all smiles.  I was, too.  There is nothing more comforting than holding a sleeping child in your arms.  

Ronan woke before the Eucharistic prayers.  Content on my lap, he remained there until it was time for me to receive communion.  He stayed quiet and in the pew from the Processional song to the last note of the Recessional song.  Words cannot describe how overjoyed we all were.  Since past Mass experiences have been quite difficult, when Mass was over, we left the church feeling like we'd completed a marathon.  I love it when we as a family can celebrate those baby steps. 

The rest of the day was relaxing.  Until the seizures started.  

That evening, one seizure after another, they were getting bigger and lasting longer.  Staying close to him, holding his hand when he'd let me, making sure that if he went down, I could quickly protect his head, I was right there next to Ronan.  Realizing himself that he was getting more and more unsteady on his feet, Ronan tried to find a cozy spot on the couch to rest.  He had started yawning, so his little sister went to find Ronan's favorite blankie for him.

Once he got cozy, in between the seizures, I found myself cradling Ronan in my arms.  The seizures were gaining in intensity and frequency, though, and hugs and encouragement would not be enough.  I knew that the next step would be to administer emergency medicine.  As worried as they were, two of Ronan's sister offered to sit with their brother when it was time for that.  They put on brave faces despite being as worried and scared as I was and stayed with him.  20 minutes later, Ronan fell asleep.  

Scooping him up to carry him upstairs, I carefully brought Ronan from the living room to his bedroom.  Watching me getting him in his bed, Ronan's little sister gently placed the blankie over her brother.  Sadness filled her eyes.  I smiled at her, but she could tell that my smile was not full of hope and happiness.  It was masking a sadness that had fallen over me.  
With Ronan safely tucked under the covers, the kids tried to go back to what we were doing, but how?  They had all been playing living room.  The kids were keeping Ronan company while he did his own thing, but they were all having fun.  To jump right back into playtime felt disrespectful.  After hugging the kids and holding them a bit longer, I assured them that Ronan would feel lots better when he woke up.  For now, he needed sleep.  They agreed.  

As we cleaned up, the kids and I talked about the seizures.  
They tried to make sense of them.  They let me know what they thought of them.  They tried to not be resentful toward them, but they were resentful.  Before we sat down for dinner, the kids told me that they don't like that seizures creep in and ruin Ronan's day.  I told them that I don't like that they do that either.  

We're pushing the easy button today.  Ronan slept 14 hours straight.  After last night, there's no way he's ready for the two therapy sessions I had scheduled for him today.  So, we rest.  We relax.  We gain strength and energy for tomorrow while enjoying the day off today.

While Ronan is enjoying a day off, I'm not going to veer too far from him.  His latest seizures have not been predictable.  He may have one one day and ten another day.  Not knowing when he'll have one let alone several of them in a row is hard.  Being unable to determine a trigger hasn't helped me be able to manage the seizures as well as I'd like to.  

For as long as Ronan's had them, I don't think I'll ever get used to the seizures.  The siblings won't either.  But for as long as he needs us to, we'll be ready to scoop him up, to cradle him in our arms, and to always be there for him.     

xo, Cat





Thursday, April 14, 2016

V is for Vaccines


My little blog is heavy on the vaccine posts lately.  That's because I've had more than a few reminders of vaccines this month.  The latest reminder was yesterday with De Niro's interview.  Those 9 minutes and 5 seconds were the highlight of my week!  It was thrilling, truly thrilling. 

Being the parent to a child with a vaccine injury brings all sorts of emotions - incredibly joyous emotions as well as ones accompanied by tears of anguish.  I experienced those tears of anguish late yesterday.  While sitting in that hot seat, De Niro was not the famous actor many know and admire.  He was a Dad - a passionate Dad to a young man with a vaccine injury.  As excited as I was to hear all that Bob had to say, my heart ached.  It ached for my child and for so many of my friends' children.  It also ached for the De Niro's child.   

Coming to the realization that vaccines played some role in one's child's health isn't easy.  I imagine that De Niro and his wife have gone through similar emotions and struggles that I and many other parents of vaccine injured kids have gone through.  I imagine that they, too, questioned, doubted.  I wouldn't be surprised if they blamed themselves or the vaccine industry, too.  People tell me not to do that.  They add, "How could you know?  You were doing what you thought was right.  You did what you did with the information you had."  Hearing those responses helps me refocus my energy on Ronan and my role in supporting him. If I dwell too long on the past and when I remember how Ronan tumbled slow and steadily on the spectrum, which I'm guilty of doing, I'm filled with moments of despair.  

Deep, dark despair.  That and the regret.  The pain.  The frustration.  That all keeps the roller coaster of emotions going full speed 'round the track.  

I've had my fair share of those hard to handle emotions.  A lot of parents have as well.  Thankfully, I've had my fill of other ones, too.  The hopeful.  The happy.  The over-the-moon excited.  Those moments have me smiling from ear-to-ear.  They are good and welcomed reminders and that help keep me going.  

The film they don't want you to see.
Yesterday's interview, despite the overwhelming response of sadness that fell over me, was filled with a moment of hope.  Robert De Niro's family made a statement - vaccines did something.  They want people to know that.  They want people to watch the film Vaxxed, they want the public to have the chance to hear the buzzwords, words like CDC, pharmaceutical companies, Trace Amounts, safe vaccines, investigate, vaccines are dangerous, not a closed issue, my kid changed overnight, there is a link, thimerosal, mercury based preservative, let's find out the truth...  

The truth.  Yes.  Let's hear more about it.    

After watching the Today Show interview, some may feel that V could stand for Vindication - De Niro confirmed what a lot of parents know as the truth.  Vindication would be nice.  It would validate so much. But today, V is still for Vaccines.  My hope is that one day, V will stand for Victory - a victory over the vaccine industry and the clutches it has over our children's health and their well-being.  That day will come.  I do believe that it will.  Until it does, there's much still yet to be done.  So, let's keep speaking up.  Let's keep sharing our story and our children's stories.  Let's keep the conversation going.  As tiresome as it can be, it's going to be up to us to keep the vaccine conversation going.  

xo, Cat

  

Wednesday, April 13, 2016

Sound Bytes

A friend pointed out that come tomorrow, the media will be doing some damage control.  That's because Robert De Niro shared some pretty fantastic sound bytes during a Today Show interview this morning.  If you haven't see the interview, take a few minutes to watch it.  I promise that you won't be disappointed.   

I had some of the kids gathered around to listen to what Mr. De Niro shared, too.  They were impressed.  They were also thankful.  It isn't every day that someone on TV gets a chance tell the whole world what you've been saying for years.  

Ever since they were old enough to understand Ronan's vaccine injury, my kids have questioned vaccines.  They've also question the media.  They hear from the media that "the science" is clear and that vaccines are safe and effective.  Hearing that being said bothers them because they know the opposite to be true.  

If vaccines are so safe, why do kids get hurt from them?  

If vaccines are so effective, why do they sometimes not work to prevent disease?  

If a vaccine is so life saving, why did someone die after getting one?

What's being said and advertised on TV, in magazines, and by some medical people doesn't match up to what happened to their brother.  Because of that, my kids have learned to question news sources.  They especially do that when they hear a reporter read straight from the from the carefully crafted 'vaccines don't cause autism' memo that circulates whenever a vaccine segment goes on air.  

"Mom, please.  Why are we listening to this?" one of the kids will ask, "They have no idea what they're talking about."

To which I reply, "I know, dear.  It's sad, isn't it."  

Yes, it is.  

The media tries so hard to be an authority on the subject.  Someday they'll figure out that they are not.  
So tomorrow, when the media turns to to squash all that De Niro said earlier today, get your BINGO cards ready.  Keep tabs of how many times you hear the usual words like Discredited, Anti-Vaccine, and Debunked. 
You'll surely be able to fill out 4-in-a-row on Thursday morning.  I bet you'll get a Blackout before the anchor on the evening news signs off.  Whatever you do, while you hear those same old, same old recycled words, don't lose hope.  

I never imagined he'd say as much as he got to today, but I had a feeling that we'd hear from Robert De Niro again.  Good on him for keeping the vaccine conversation going.  I'm looking forward to hearing more of what he has to say.  

xo, Cat




Monday, April 11, 2016

70 Below

70 below. 

No, we're not talking about the weather today.

My child has autism.  It’s the non-verbal regressive form of autism.  If he remains as cognitively delayed as he is, he’ll need life-long care.  We’re ready to provide that.  Thankfully, other groups exist to provide that kind of care as well. 

Local agencies advertise that will work with families like mine.  They can help us to get the sort of support children like my son will need as he ages.  With how much support Ronan needs, tapping into local and state service is a godsend.  But the process to secure those services?  It’s lengthy and daunting as well.  I knew this.  But nothing could prepare me for the emotions that came over me as I started the process.

I played phone tag a few weeks ago with a representative from an agency who can assist me.  Responsible for screening incoming clients who may need long-term special needs services, I hated to miss her return phone call.  In our area, the wait list for services isn’t just a mile long; it’s years – at least 5, according to other parents – long.  So, when the representative and I were finally able to connect, I made sure to be prepared.

I plugged Ronan in to his favorite activity - the Wii.  It would surely keep him occupied while I was on the phone.

I had my list of questions ready.  There were many.

I had documents close by to reference.  The stack was at least 2” high.

I had my calendar open.  I was ready to cancel everything from here to December to make sure Ronan got an appointment.

We started the phone call with pleasantries and then got down to business.  I explained why I’d called her office earlier.  I have a son…he has autism…he has medical issues as well…I understand he may qualify for services…I believe that there’s a wait list…can you tell me what I need to do to get him on that list?

Needing to make sure my request would later be routed to the right program, as there were others that this group represented, I was asked to list Ronan’s diagnoses.

“Okay, well, he has autism, and seizures, and some GI issues.  He’s also developmentally delayed, is non-verbal, and has neuropathy.  He goes to therapy - physical and vision, and has been through speech and occupational therapy before.  He wanders, needs assistance when eating, and oh, and he has some eye and endocrinology/growth issues as well.”

I paused then said, “Gosh, he’s got a lot going on, doesn’t he?  I mean, I know he does, but to say it all out loud like that…”  My voice trailed off.

Not responding to that particular comment, the woman from the agency continued, “So autism, and let’s see, let me get the right form.”  I could hear her rustling through some papers. 

She continued, “Do you have an IQ score for Ronan?  Do you know if it’s below 70?”

Below 70? 

Ouch. 

Anything below 70 is considered intellectually disabled, or having cognitive limitations, or having a mild to severe mental impairment.  Even though I think Ronan is a genius, in my heart, I know that on paper, his intellect measures much, much lower.

“I don’t know if I have an actual number.  Let me look on some recent testing,” I started.  “I have that paperwork right here.” 

I thumbed through one of the files that I had made sure to have available during the phone call.  Yep.  There is was.  The IQ test.  Hunting for the score, though, I couldn’t make sense of the report. 

I said, “I see a range of numbers, but not a specific statement that says, ‘Ronan’s score is…’” I read off some parts of the report, and I mentioned the numbers in one of the tables hoping that was sufficient.  

She replied, “Okay, thanks.  We can work with that."

Assuring me that we’d be able to use that report for his screening, the rep said it sounded as though we had enough documentation to be able to move onto the next step to get the services.  In order to continue the screening process, I’d need to come to the office.  I’d have to bring other documents that reflected Ronan’s delays, fill out some paperwork, and bring Ronan with me.  Would we be available to do that in two weeks?

As much as I wanted to say no because admitting on paper and in person what my child can and cannot do is never easy, but knowing that that was all part of the process, I quietly replied, “Yes.  Tell me which day, and we’ll be there.” 

What Ronan can and cannot.  That changes.  He has his good days and is able to retain what’s he’s learned.  He, like all of us, has his bad days, too.  Those bad days may see regression either of a skill or a behavior, or worse, aggression.  We sail through the good days always saying thankful prayers as that day draws to and end.  We pick ourselves up off the floor after a bad days and pray that tomorrow will be better. 

Always trying to find something to celebrate, we gave a big ol’ round of applause just a week ago. 

For two years we’ve been trying to teach Ronan how to complete a simple task – clear the table.  Mind you, it’s only his plate and his cup that he’s been asked to clear, but he can now successfully bring his dishes to the kitchen counter.  He does it consistently, unprompted, and with a great amount of pride.  

We whooped and hollered with glee the first time Ronan signed that he was finished eating, when he motor planned his way out of the dining room chair, when he stood up, reached for and held onto his plate and his cup without dropping them, and when he walked to the kitchen and put the dishes on the counter not in the trash can, because that, my friends, was progress. 

To a non-autism family, it may seem silly to cheer as loudly and happily as we did.  But it was monumental.  What Ronan accomplished wasn’t anything close to what his typical peers in non-autism families are accomplishing right now, that’s for sure, and I try not to compare what they are doing and what Ronan is not doing.  But I do compare. 

Other 13 and 14 year olds we know are maintaining their position on the honor roll.  They are getting acceptance letters into prestigious high schools.  They are making home runs and being asked to join a travel soccer or baseball league.  Ronan’s peers are literally and figuratively leaps and bounds ahead of him.  I’m happy for them.  Really.  I am so very happy and so proud of these kids.  But I’m also sad.  I’m sad thinking that it’s too bad that Ronan isn’t able to join them on the sports field, or in the classroom, and within their social circles.  Yes, they invite him in (and I’m so grateful for that!), but it is so difficult for him to keep up with them and to engage in what they are doing. 

While Ronan’s peers are accomplishing typical skills, I’m trying to secure a spot on a waiting list for services that’s 5 year’s long.  We live in the same time and in the same space, but our lives are worlds apart. 

The emotions that come with parenting a special needs child are the same as the ones a typical parent cycles through.  We each feel joy.  We each go through moments filled with happiness.  We each endure sadness, anger, and frustration – sometimes all on the same day!  For as long as I’ve been checking boxes on paperwork of what Ronan can do, and filling in questionnaires of what he cannot, those emotions have always been right there under the surface.  I don’t like that some of them can pop up quickly, like when the agency rep followed up with me and said, “It sounds like Ronan’s IQ is low enough to qualify him,” but they do pop up.  That's when my smile fades, a wave of sadness envelopes me, and tears begin to stream down my cheeks. 

Ronan’s low IQ slams so many doors elsewhere, but it opens other ones in the special needs world

Our screening appointment is this week.  I’m gathering my files in order to be well prepared.  I’ll bring Ronan’s latest medical reports with me to reference.  I’ll have his intellectual and educational reports on hand to show justification for services, too.  I’m not sure what I’ll have to fill out, but I’ll make sure that I answer each of the intake questions carefully.  

I’m going to bring Ronan’s diaper bag, a change of clothes, snacks, and some of his favorite books with us as well.  I’ve never thought to bring them with me before, but this time, I think I’m going to bring some tissues.  I certainly hope that I don’t cry, but if this appointment has me concentrating on everything that Ronan cannot do – which is quite a lot, I’ll be prepared to wipe away any unexpected tears I may find rolling down my cheeks.  

xo, Cat