Courage.

This post is about Jackson.  My amazing, happy, sweet, caring and beautiful little boy.

I haven’t written on here in months.  Months.  Not because I haven’t thought about it – I have – in fact, I’ve almost craved the ability to write what I am about to say – but then I would get nervous.  Anxious.  Timid.  Shy.  And I’ve come so far from being any of those adjectives…. So I’m being brave.

Tonight, I got a push, so I have decided to share what’s been going on in our lives since last October when I posted.  If you read that post, it means that you read that we had been seeing a neurologist in our area and that he ruled out autism for our buddy, Jackson.  He wanted us to do some follow-up stuff, including a neuropsych eval, which we had completed at the end of October.

During that eval, we were told that Jackson has autism.

This was very difficult for me.  Not for the normal reasons.  At times, a parent may hear that their child has autism and be thrilled.  They have an answer.  They know what treatment plans are available.  They know expectancies.  They join support groups, get therapies, and know that there isn’t a cure for autism and continue living their lives.

I’m not like most parents, I suppose.  This news was devastating to me.  As a special educator, I know what it’s like to receive paperwork with the words “Autistic” written on it.  Not that I cringe, but there is the fear of the unknown.  How severe is it?  Is the child verbal?  What kind of behavior issues, if any, does the child have?  What social abilities does this child need?  And then, the worst – when I tell the teacher that’s going to have the student and they sigh.

I don’t want that for my child.

My child doesn’t deserve that.

Let’s say Jackson DOES have autism.  (Which, by the way, I don’t think he does.  I am a professional in the field, so I am entitled to my own opinion.  He has social cues.  He makes eye contact.  He communicates.  He is actually talking up a storm.  A year ago, he was still using sign language and he had 20-25 single word utterances.  Today, he told me that “Mommy, Daddy, Gracie and Jackson at the beach.  We see the truck and the airplane and the water.”  (Which is true, because we saw a truck, airplane and water at the beach when we went in December for a weekend)  (and he was looking at a picture of us on the beach, so it wasn’t like it was a random thought.))

Back to the point.

Let’s say Jackson has autism.  The last thing I am interested in is for ANYONE to pass judgements or make assumptions about my son.  And I know that may happen.  I know that someone may assume that he has behavior issues or meltdowns that are screaming fits, that he may be violent.  He is none of those things.  Sure, he has a tantrum once in a while.  Sure, he has a hard time sharing.  HE’S THREE.  What three year old DOESN’T have a hard time sharing?  I don’t want that for him.  I want people to see him as this amazing and sweet little boy who has made me so incredibly happy.

I’ve gotten better.

In the past 3 months since the diagnosis, I have become much more accepting of it.  The progress he has made is simply unmatched and unreal.  He continues to have his sensory issues, but has gotten so much better at self-regulating.  His anxiety has gotten better.  His receptive language has made tremendous gains.  He is more tolerant to touch new foods, even if he won’t eat them.  He asks for hugs and kisses.

The other positive is the neuropsychologist wants to re-evaluated him in a year to determine if that diagnosis is still appropriate for Jackson.  Until then, we are working our ass off for him.

He also started a preschool program in my town.  In NJ, Early Intervention only goes until they are 3 and then they go to a 3 hour program at their neighborhood school.  He takes the bus.  He LOVES it.  They want to potty train him.  They send me Emails with messages like “his nickname here is Mr. Smiles”.  He’s progressing.

And I am so proud.

So. Sure.  Maybe he has autism, maybe he doesn’t.  Maybe we just need to give him a minute for him to catch up.  Maybe no one will make assumptions about him.  But, trust me – I can assure you all of this – Jackson will be held to the same standard as I would give to a neurotypical child, such as my Grace.  He will be expected to do what anyone would expect a 3, 4, 5, 12, 16 year old to do.  And he will be loved, nurtured, comforted, thought of, cared for, and protected just the same.

Okay, fine.  Maybe a little more.

Jackson gettin’ on the bus on his first day at preschool.

It’s good to be back.

Promise the next post will include my Gracie, that sweet little sassy thang.  ❤

Progress.

It’s been almost a month since I have written, and that’s not because I haven’t had things to say.  I have had plenty to say, but I have had a difficult time trying to get the words out the correct way.  I have tried desperately to get this out… but the words don’t seem to find me.  Hopefully, this time – they will.

As I have written previously, Jackson was born with a virus called CMV.  I am extremely fortunate in that Jackson was not born with any life threatening or completely life altering situations – he can hear, he can see, he does not have seizures – we are very lucky.  But, in the NICU, they told us that there was a possibility that Jackson could have some developmental delays, including speech, behavior, physical appearance-wise, etc.

Well, Jackson has gone from the 3rd percentile for weight to the 90th in just under two years.  He is tall, he can walk a mean walk and he is very physically strong.  (My mom sometimes calls him Tarzan…)

But, he doesn’t eat a very diverse diet.  And he isn’t speaking as much as we would like him to at this point.  So, I was concerned.

We have gotten him evaluated for early intervention services in New Jersey, because we feel that he would have qualified – and of course, he did.  He is now receiving intervention with a special instructor once a week, and we have added on occupational therapy once a week also.

In the last 2 months of services (and keep in mind, he hasn’t received occupational therapy yet!), he has gone from just saying “mom” and “dada” to….  “ep” for “step”, “eee” for “eat”, “ahhhh da” for “all done”, “yay” for “yay”, and he also says “oooo dee” which means something we haven’t figured out yet.  😉

It doesn’t stop there, though.  He has also been more social, more calm and he has found more ways to communicate with us.  He follows directions – like, if I tell him to go get me a book, he will!  He has made so much progress and I am so so proud of him.

It’s interesting, because I am a teacher of special education children.  I work with severely autistic, emotional disturbed, learning disabled, developmentally delayed, multi-disabled children on a day-to-day basis.  And, for that reason, I should be thankful and grateful that I have this amazing little boy – I saw the signs and I was able to get him help as early as possible.

But, instead, I find myself beating myself up.  Blaming myself.  Being angry and frustrated and completely stressed and over-whelmed.

Taking Jackson trick-or-treating at school was horribly overwhelming for me.  I mean, he looked amazing in his Richard Simmons costume, don’t get me wrong – but he was constantly trying to run away from me, he was getting frustrated and antsy – he was almost out of control.  So, I did what a normal Mom would do.

I cried.

And I blamed myself.

 

But, then I got to talk to John.  And he made me realize all of the progress that Jackson has made.  He is gaining new sounds and words every single day.  He is listening.  He is amazing.

 

I knew that he was going to be a special boy.  I just need to realize that I am his special Mom.

 

strength.

I have this hanging in Jackson and Grace’s room. It was a “must-have” – it reminds me of the incredible bond I have with my babies. ❤

There are moments when I want to scream.  And there are moments when I want to cry.  And there are at least 3085 times a day when I am wondering if I left something at home, at school, in the car, in my room, at daycare, etc…

Being a mom is incredibly difficult.

No news there.

I have watched in awe of my own mother.  My mom, who is one of my favorite people and an absolutely amazing mother, has been through a lot.  When my dad moved out, my mom got a job, kept us in our house, and allowed us to all graduate from the same high school.  She taught me the value of an education and how to curl my hair.  She showed me how to not judge people by anything – you never know what they’re going through.  She taught me how to drive, knits my babies things, and loves me for me.  She is my partner in crime, my favorite mermaid girl, and is, by far the strongest person I have ever met.

Mom’s… we are just meant to be strong.

During the past 2 years, I have taken more notice than ever on my strength and the strength of other mothers around me.  Being a Mom is a completely different way of being –  you wake up before the baby cries.  You hear the “bad” cough rather than the normal one.  You can tell by looking in the eyes of your sweet child if they are teething or if they are hungry or if they are just really sleepy.  It’s amazing.  And yet we somehow are able to spin off schedules at the drop of a hat, we can meal plan like no other and we would sacrifice taking a shower for 3 days if that means we could just get <> that much more sleep.

I am strong.  I change diapers when I’m not in the mood, I give baths when I’m exhausted, and I can find a pair of matching socks with my eyes closed at the bottom of the clean clothes hamper.  I can make a lunch for my son in less than 2 minutes.  And I remember what flavor yogurt he has eaten for the past 4 days.  I hear Grace cry and can find a pacifier under the crib (that mini hockey stick has come in handy…) before she wakes Jackson.

I survived a 3 week stay in the NICU.

And 6 weeks of an antiviral medication.

I have survived having two babies in 11 months.

I have survived post-partum depression/anxiety.

I am strong.

If you’re a Mom, so are you.

I have friends, relatives and colleagues that are Moms.  I watch in awe of them.  They are working, breast feeding, pumping, running marathons and/or 5K’s, have clean homes, their dishes are done and their babies are happy.  They are showing up to appointments, making dinner more than 3 nights a week and are planning on another child.  They are remembering to go to doctor’s appointments, they brush their hair, and they have their babies clothes separated into age appropriate bins.  They remember exactly how old their babies were when they said their first word, where they were when they took their first step, and the words to The Tooth Book by Dr. Seuss (“…I have no teeth says Hilda Hen but women do and so do men….”).  They may have a special song they sing as they rock their baby to sleep, and they know just the spot to touch them to not wake them up.

Moms are strong.

I believe it’s because of the love we have for these special mini people that follow us around, that climb up our legs and whine in that way that we can distinguish to know that they want water and not a cookie.  It’s the love we have that will not let us throw out a certain outfit or will twist our arm to make us sneak them one more Teddy Graham… or we will read that damn Tooth Book one more time.  It’s why we spend more money on a Halloween costume than we do on our own hair cut, color, and blow dry.  (Um, Hulk Hogan.  Need I say more?)  It’s why we start planning for Christmas gifts in August.  It’s why we were given the babies we were.

 

 

 

 

anxiety.

maybe i should have known when i took the pregnancy test.

or, maybe i should have guessed it when i would wake up in sweats during my pregnancy with grace, after the nightmare of miscarrying. 

an alarm should have gone off when i had that one, recurring thought of grace dying during her c-section.

or when i asked john if she was okay within seconds of him meeting her.

or the countless amounts of times i almost asked the nurse for her to be on a heart monitor or if she was healthy.

but, i knew it when was waking up 2941946 times a night to make sure she wasn’t dead, because i had CONVINCED myself that she was going to die of SIDS.

(yes, i still wake up.  at least twice a night.  it’s been almost 10 months.)

In NJ, where I live, you fill out a questionaire/survery thingie to determine your “at-risk-ness” for post partum depression.  I remember filling it out after Jackson was born and it was like, “are you anxious?” …um, my kid just left the NICU and is being treated for a virus i never heard of before that TRIED TO KILL HIM.  um.  Yeah.  I’m ANXIOUS. 

“do you cry?”  um.  see above.

For Grace, though – I had no reason to be anxious.  I had no reason to cry.  But I was.  And I did.  Not often, but I did enough to know that something wasn’t right.  I was not myself.

So, I did what any normal Mom would do.

I kept it inside, assuming it was like a cold.  It would go away with liquids and time and “rest”. 

It didn’t.

So, I got my thyroid checked.  I was born with congenital hypothyroidism; I was born without a thyroid.  When your thyroid is messed up, it can lead to depression, so let’s check that.

It was fine.

Well.  I wasn’t, so then I made another appointment with my OB/GYN and we talked about me and the feelings I was having.  And, I talked to John.  I just let him know that I didn’t feel like “me” – and that I was really anxious and that I felt like I might need some help.  Of course, he was incredibly supportive.

So, I went to my OB and and we had a lovely talk about post-partum and her “breaking point”… where she knew something just wasn’t right.  (she is an amazing survivor of PPD and has been amazingly helpful)

….and a few nights later, i had my breaking point.

I woke up in the middle of the night to make sure Grace was breathing.  She had spit up earlier in the evening and she was swaddled and was happily sleeping.  My brain told me “oh, good, you should be sleeping, too.” — but my heart would NOT let me.  And my stomach would turn into knots and I went kind of nuts.  All of a sudden, it was “wait.  what do you do when your friend was drunk in college.  you didn’t sleep them on their back.  they could choke on their vomit.  and, sh!t, grace SPIT UP EARLIER TODAY.  are you an idiot?  you are going to KILL GRACE.  she is going to spit up and she is going to choke and die and you’re going to wake up in the morning and boom. she’s dead.  GET HER ELEVATED!”

yeah.  so then i started pacing.  and staring.  and crying. 

then i calmed down.  the tears went away.  but…. then john woke up.  and he asked why I was up. 

….”grace is going to die if i don’t get her elevated and i can’t find anything to make her bassinet elevated so i am just going to sit here and watch her sleep.  i’m nervous that she is going to spit up again”

yeah, um.  john picked up a pile of (somehow?) folded towels (he must have folded them…), put them under the bassinet and she was elevated.  it took 2 seconds.

i slept more sound than i ever had.

and then John asked me the next day when I was going to start seeing someone about my anxiety.

touche.

Soooooo, I have been in therapy since Grace was around 8 weeks old.  It has been incredibly helpful and wonderful and I feel like I have come a LONG way.  I go once a week, and it’s really wonderful to have that hour (…or so…) to myself and to be selfish and talk about what’s going on in my mind and my heart and my feelings on different things.  but, what’s been very beneficial is having the RIGHT therapist.  omgoodness, this woman.  there are no words.

I mean, I know I basically pay her to be nice to me, but I love her.  And she gets me.  I need that.

I am not going to sit here and preach about therapy or about post-partum depression/anxiety or anything like that.  Pinky promise. 

But, as a new Mom, or a mom of Irish Twins — please keep in touch with yourself.  And if you feel like you’re not you.  Or, you start having thoughts in your brain that have NO BUSINESS being there?  Know it’s normal.  And it’s okay.  But, talk them out.  To SOMEONE.  Write them out.  Find a counselor or therapist.  Start a blog.  (It’s very therapeutic… my (one day, live-in) therapist (if I win the lottery…) recommended it to me!)  Get help.  It’s worth the co-pay. 

Pinky promise.