Sunday, July 5, 2015

Let's See How Far We've Come

In writing again, I would be doing everyone a disservice to neglect to catch you up to speed on the adventures of the Reinventing family.

There have been a great many things that have happened in the past year since I last updated, many of which deserve their own post and their own due. In many ways, this has been a "reality check" kind of year, highlighting exactly what challenges we still face as a family while also bringing forth some wonderful surprises and accomplishments. In short, we're getting a better idea of exactly what Jack's long-term needs may be - at least for the foreseeable future - and our approach is evolving along with our boy. 


Jack is now 6.5. He just completed kindergarten in a self-contained mixed disability class and will be returning to that same placement and grade-level for a second year. I have mixed emotions about this, but I feel that it was certainly the best option we had at the end of this year, which itself was a challenge both to him and us as his parents. More on this at another time. 

To meet Jack's changing needs, we have tried to implement some new supports and services. We discontinued physical therapy last Fall only to resume it this past month. We attempted a social skills group only to find that a) Jack wasn't ready for it, and b) that it wasn't what we wanted for him anyway. We discontinued that group after just a couple of months. 

We have looked outside the box a bit to help Jack grow. Now we are doing weekly music therapy (which he seems to enjoy) as well as private swim lessons (which he loves). Both have been brilliant, if not slightly unconventional, ways to help meet Jack's needs. More on both in another post. 

Jack has had some real challenges this year. It's been difficult to find ways in which he can communicate effectively and ways to help him manage his debilitating anxiety and obsessive-compulsive disorder. The latter two issues I had always just lumped in with Jack's autism, but I am coming to see them as both influenced by and separate from his identity as an autistic boy. His anxiety and OCD seem on face to be more severe than what some of his autistic peers struggle with and it is these issues that present us our daily challenges at the moment. I have said repeatedly that I would not strip Jack of his autism as I see it as a central part of what makes him who he is; however, I would take the anxiety and OCD from him in heartbeat because of the genuine pain they cause him. In light of that, we are again pursuing medication and treatment for Jack for these specific issues, but have not found a good solution thus far. 

Jack's year has not been entirely a struggle. He seemed happier this year as opposed to the last and made genuine connections with the teacher and para-pro in his class, as well as with his new SLP at school and private OT who seem to really understand him. He even seemed to find a kindred spirit or two in several fellow autistic classmates. To see him connect with these children for brief moments - in their own way - was beautiful. We also took Jack's first plane trip up North to visit family...and Jack rocked it. So in light of the struggles, there were new possibilities. 


You might recall that Jack is not the only offspring meandering about the Reinventing house. The other sweet soul is his little brother Andrew, who is by all indications NT and - at the age of 14 months - asserting daily his status as a fledgling toddler. The bond he shares with Jack is special and so often exactly what you'd imagine of a little brother. He idolizes Jack, but gets in little nonverbal squabbles with his older brother from time to time. They both enjoy the same toys at this point, so sharing is a challenge, perhaps slightly more so for Jack as Andrew will gladly give his brother a much coveted toy if Jack is truly distraught over it. He seems to understand when he can push Jack's buttons and when he cannot, and he often tries to join Jack in whatever he's doing by way of parallel play. 

In many ways, raising Andrew has been a challenge in that his needs are so different from Jack's at this same age. Already a proficient walker, Andrew is more mobile than Jack was for most of his second year and more capable of creating havoc and chaos within a matter of moments. The dichotomy of both independence and clinginess that he demonstrates at this time can be exhausting, but I imagine is very typical of raising a NT toddler. 

Most of all, he's a little love punctuated with a little mischievous nature and the personality of a social butterfly. He loves and lives and laughs full-speed, which is not at all unlike Jack, just different. 


More adventures, challenges, and triumphs - because there are always triumphs - are on the horizon for the Reinventing boys. Welcome back to our story. 

Thursday, July 2, 2015

Reinventing Mommy 2.0

Months ago, I shut down my Facebook page and temporarily shuttered my blog. It seemed like I didn't have enough time to write with an autistic kindergartener and an infant, particularly since our community seemed so...fractured. I felt as though I was spending hours editing posts all for the sake of offending no one. It didn't work. No matter what, I garnered offense. I was either too positive, too negative, too some-qualifier-that-I-couldn't-foresee-but-that-surely-caused-offense. 

I just have to say this...I need to write. It's not some kind of Internet exhibitionism; it's a primal need to voice these thoughts and release them. 

Before we go further, I will say this...this is the story of my life. My experiences. This is me raising my children, both autistic and NT. this is me feeling their pain and joy and struggles and achievements right along with them. I don't claim to speak for autistics any more than I claim to speak for the entirety of any group. I speak as a mom. As a mom, sometimes I'll get it right...but sometimes I won't. 

In those times where I fall short, I will try to recognize that fall, but let's be clear...there will be times that you the reader may disagree with me or each other. That's okay. We are living different lives and our choices and views will not always align. 

I do believe we can find common ground in whatever brings you to this space. I'm many things you might relate to and many things you might not. Take from that what you will.


When I started Reinventing Mommy, my focus was fairly simple; I was a stay-at-home Mom raising an autistic toddler. That has evolved a bit over time and this blog will reflect that. Not all posts will be about autism, for now I'm many things:

I'm a mom to an autistic kindergartener (that's not a typo, I'll explain Jack's placement next year another day). 

I'm a mom to a NT toddler. 

I practice attachment parenting and extended breastfeeding. 

We do therapy. We do medication. We do vaccines. 

We do messy and fun as well as the tough stuff. 

My autistic child requires a high level of support (I'll talk later about why I've adopted this versus the usual functioning labels). Some things are great and some are good and others still are incredibly hard. 

It is my hope that in the process of my sporadic catharsis on this blog someone - maybe you - will feel comfort in that "me too" moment. If not, that's okay. 

So continues our story...

Tuesday, September 23, 2014

You're Doing Okay


I see it in your eyes. 
You're scared. 
You think it's not enough. 

Too little. Too late. 

There's not enough

You feel like a failure. 

Why can't I calm the screams? Why can't I communicate with him? Why can't I help? Why can't I figure out a way?

And so you keep playing that same beloved video
Following the same routine
Serving the same foods
Standing by

You bear too many bruises
And have cried too many tears. 
You've let my struggles become your own

You have also smiled at each glance
Laughed right along with me
Been my biggest fan
Cheered at all my triumphs
Bought me one too many fidgets/trains/Angry Birds games
Just because I love them. 
You've been fine with all of the things that make me who I am
Supported me no matter what
And let me know that I could do anything. 

You fought for me. 

You love me with all your heart 

And while you think you're not doing enough
I know you're always there for me.

I let you know by the way I rest my head against your arm
Or gently touch you just to "check in"
Or try my hardest just for you. 

I give you lean-in hugs
Side kisses
And I hold your hand. 

So even though you feel like it's not enough
That you aren't enough
I want you to know this, Mom...

It's enough. 
You're doing okay. 

Thursday, August 28, 2014

To My Fellow Gymboree Moms: Some Thoughts on Child Development

You. Yes, you! You're a first time mom, younger than me, and still in your twenties (hey, it happens when it takes you 5 years to have a second baby). You've openly admitted that you have your baby in Gymboree classes to give them an edge - a boost - over his or her peers. 

In essence, you have your baby in Gymboree because you hope they will be the opposite of my first Gymboree baby. 

And here I come. I'm kind of the antithesis of most Gymboree moms. I'm older, I'm here with my second child, and I long ago gave up on having a nicely monogrammed matching blanket and burp cloth set to place my baby on for class. He has the closest blanket I could grab before leaving the house, and I probably have spit-up, pee, and/or peanut butter smeared somewhere on my shirt. I'm a second-time mom; it's just different with two. 

Ah, asked about Jack. Yes, he did Gymboree for 2 years. Actually, I did Gymboree with Jack for very similar reasons as yourself...I wanted to give him a developmental edge. My motivations for this were slightly different, though. He was showing delays and I thought - erroneously - that putting him in Gymboree might sort him out. 

Except it didn't. Jack was in Gymboree for 2 years and he still was diagnosed with autism. He had 2 years of developmental activities and social skills through Gymboree and it didn't make a world of difference. He still was autistic in the end. 

That's because in spite of what any programs like Gymboree will tell you, there's not a lot we can do to change the trajectory of who our kids are hard-wired to be. If there's not a ton that a good parent can do to screw their kids up, then there's probably not a ton that good parents can do to give their kids an edge. 

Here's my point: don't do Mommy and Me-type classes like Gymboree hoping that you are instilling prodigy-like qualities in your baby. Focusing so much on your child's development (or, in my case, lack thereof) will only lead you to worry and miss the finer moments, like the way your baby strokes his hair while nursing/feeding, his favorite tickle spot, and when he first grabs his own toes. 

I say this from experience because I don't remember a single one of this little things about Jack. All I remember was how he didn't eat, how he couldn't walk or crawl, and what he wasn't doing. And I HATE that now. In many ways, I'm having to play catch-up now with Jack and I'm learning to say "to hell with age-appropriate!" and focus on his childhood.

Don't make that same mistake. 

Sure, I do Gymboree with my new baby, but that's because he likes it. He's a social butterfly and he enjoys the fun of it. I suggest you do the same. Go to learn how to play with your baby. Go to have fun. Go because your baby enjoys it, but don't go to get an edge. 

Don't be so focused on the activities that you don't take lots of pictures. Enjoy this time; it really goes by fast. 

Tuesday, July 1, 2014

Pandora's Box (And Why the SCOTUS/Hobby Lobby Decision Affects Us Special Needs Families)

I'm Catholic. Im a Mass-going, Eucharist-taking, Confession-attending Catholic. I go to Mass on Sundays and Holy Days of Obligation. I teach Religious Education to preschoolers in my parish. I'm pretty much the poster child for someone who should be thrilled about the decision by the Supreme Court to allow for-profit companies to opt out of health care regulations that they find to be in conflict with their religious beliefs. 

Except I'm not. I don't agree with SCOTUS at all. 

I've never had a problem with unwanted, unplanned pregnancy. On the contrary, my pregnancies had to be heavily planned. I would personally never chose abortion for myself; I couldn't do it. I consider myself pro-life in that way. 

However, I've always believed that my religious freedom should not trump your right to determine for yourself what is or is not right for your body. I may not agree with you choice and I may long for some alternatives, but I agree with your right to choose it. 

I also recognize that some alternatives - like birth control - prevent abortions from needing to occur. I wish that my fellow Catholics would get on board with this idea as a means of preventing a much greater harm, in the church's view. 

But ultimately your choices are your own. This is why is believe that SCOTUS's decision to side with Hobby Lobby has opened a Pandora's Box that will allow companies to opt out of paying for treatments under the veil of "religious freedom". Here is my concern...

Now, it's contraception. That may seem like no big deal to some, but that's because our own narrow-minded view is that the Christian ideals are the right ones. 

As a special needs parent, my kid takes anti-anxiety medication. Other SN kids take varieties and cocktails of other drugs that allow them to focus, remain calm and regulated, and generally feel better by mitigating some psychiatric symptoms like depression or anxiety. Let's say that The Hubs' law firm was suddenly acquired by Scientologists. Scientologists do not agree with the use of psychiatric drugs. What if they decided that they no longer wanted to cover those drugs, leaving Jack in the lurch for his much-needed medication?

Now, SCOTUS didn't say anything about any treatments or drugs other than contraceptives, so that is like arguing apples and oranges...

Maybe, but the reality of the SCOTUS is that their rulings are used to establish legal precedent. When the Scientologist-run law firm decides to sue the state saying that state insurance mental health mandates infringe on their freedom to practice their religion as they see fit, they will use this Hobby Lobby case to establish rationale for why the SCOTUS should side with them. Basically, they 'll be saying, "You did it before, why not do it again?"

But they didn't outlaw anything. If you want a treatment that your company opts out of, then pay for it yourself!

Have you actually looked at the Explanation of Benefits pages that your insurer mails you? If not, you should. Health care isn't cheap. The amount billed to your insurance company is significantly more than you will ever see in a bill. If your insurance company denies a claim outright because it's not covered, you are responsible for that cost. Often, it is out of the financial reach of most families. Telling someone to pay full price for their medical care puts a huge strain on families. These drugs aren't cheap and - as such - can force parents to choose between paying rent or buying food and getting their kids' medications. 

It's convenient to impose that on others when it does not affect you. Once it does, you'll fight harder against such rulings. 

Okay, so just get another job! Go with a company that will cover your treatment!

It's funny that this would even be a consideration given that the Recession left so many out of work. Getting another job isn't always the answer and - in some cases can't come soon enough to cause not disruption in treatment. For some conditions, any disruption in treatment could have disastrous consequences. 

I have the religious freedom to go be the Catholic I want to be. That freedom does not give me the liberty to force my choices upon others. And if we do not want the choices of others thrust upon us, our families, and our children, we should think long and hard about whether or not SCOTUS's decision means that much that we would be willing to sacrifice any number of treatments - blood transfusions, vaccines, and porcine heart valves are among those that are against the religious beliefs of some - for the ability to stop a woman from using contraception. 

More importantly, would you be willing for your children to forgo those treatments? Something to think about, friends. 

Monday, June 23, 2014

Balancing Acts

No one quite tells you just how difficult it is to make the leap from one child to two. With two children, you run out of things easily. You don't have enough hands to hold or carry everyone. You don't have enough mental capacity to process multiple requests. You don't have enough time.

It helps to remember that everyone goes through growing pains when they have a second child, whether or not their first has special needs. However, it doesn't diminish the fact that many of the "extra" things we as special needs must do for our kids aren't optional; therapy, strange school schedules, IEP meetings, and extended self-care tasks are more common for special needs parents. As much as I would have loved to just stay home with Andrew in the initial weeks, you don't get maternity leave as an autism mom. Andrew was accompanying us to therapy appointments - of which Jack has 5-6 weekly - from the time he was 2 weeks old. He had to come along, because The Hubs couldn't take months off work and Jack's world could not stop. 

As a result, I've gotten many questions about how we manage, if I am pulling my hair out yet, and is it possible to raise a newborn and a young autistic child simultaneously. 

I say that you could, if it is what you truly wanted. Just as all of us looked at what our child's diagnosis would entail for our lives and thought, How will I do this?, so you will with the addition of a baby to your special needs family. 

And just as you figured it out with your special needs child, so you will with your newly expanded family. 

We special needs mamas are a resourceful lot. We figure out what to do and how to manage. We plan and have backups upon our backups. We adapt and learn how to shape our environment to suit our children. And you'll do the same with a newborn. 

So, how do I survive? Here are a few tips I can give from my limited (8 weeks worth) experience being a mom of a newborn and an autistic Kindergartener...

1. Plan ahead. It seems obvious, but doing things in advance as I have time has saved my sanity. I set out clothes for everyone the night before. I prepare Jack me lunch for therapy and set it on the counter alongside Andrew's car seat and the diaper bag hours before we have to leave for therapy. When I get a spare moment, I do things in advance to keep me from being crunched for time later. 

So how do I manage to do that? Well...

2. Get a good carrier and babywear. Seriously. I had a Baby Bjorn with Jack that I hated. As a result, I used it twice. This time, I recognized that I needed a hands-free way to carry Andrew. He is a baby that wants to be with me - preferably held - at all times. At the same time, Jack requires a lot of assistance still at this point, so I needed to be able to move with him rather than make his world stay still. 

I can't overemphasize the worth of a good carrier. For the record, I bought an Ergo, which I've found very easy to put on. It's been worth it's weight in gold thus far. If you're in the market, I'd highly recommend it.

 3. Ask for help. This may be obvious, but don't go it alone. If you don't have family nearby, at least have your spouse or partner pick up the slack. The Hubs has been making it a point to get home in time to help out with bathtime. This has been a huge help, as I haven't quite figured out how to get both kids bathed and ready for bed on my own. 

4. Cut back on your schedule (where you can). Consolidate therapy sessions so that all of your driving is done 1 or 2 days a week. Take a week off of therapy (it won't make or break your kid, I promise!). When you are still recovering from delivery, try to make your life as simple as possible. If that means a week or two without therapy, so be it.  

5. Remember's okay for your special needs child to not be the focus for a few weeks. I love Jack with all my heart, but having Andrew has taught me this...our house cannot be a dictatorship. Jack is important, but so is Andrew. Andrew cannot - and should not - come second to Jack's needs. At any given point, one or the other might take precedent over the other, but overall they are equals. Sometimes, Jack has to wait, and that's okay. It's an important lesson to learn that the world doesn't stop for our special needs children. 

Andrew will be two months old tomorrow and I have survived. Granted, it's been on survival mode, but survival mode is okay, too. I would say this to you, it gets easier. The waking every 2 hours to feed around the clock turns into waking once or twice a night. You come out of that hazy zombie mode and start to figure out how to do the dishes, start some laundry, get both kids out the door, and - miracle of miracles - write a blog post. 

And you'll see glimmers of connection between your special needs child and their baby sibling. It may be just repeating their name or pointing, but eventually you might get this...

And then, my friends, is when you sigh a breath of relief and know that you made the right decision, and that everything will be okay. 

Sunday, May 18, 2014

About a Boy

I never believed in miracles. A person strongly founded in my belief in science and reason, I have a tendency to mute my own faith with the knowledge that most aspects of life are explainable. 

I felt that way until I lost a baby last summer in my second trimester. At a point where babies aren't supposed to pass away in the womb, mine did. After so long of wishing and hoping and praying for a second baby, my beloved baby girl passed away without me ever meeting or seeing her, except on an ultrasound screen. 

At the moment where I felt I was at my lowest point - yes, lower than when I first heard the word "autism" associated with my sweet Jack - there he was. Not even a month after losing his sister, there he was. 

After 9 long months of carrying him and praying each day for his health, all the while watching my health decline and knowing that at any point it might be too much for someone so vulnerable, here he was. My baby boy. My miracle baby. 

I never imagined I could love someone as much as I love Jack. I love Jack with this all-encompassing, overwhelming could I have the capacity to love someone else just that much?

I underestimated my capacity for love. 

As I laid on that operating room table, as my baby was delivered I heard a noise that I never heard with Jack - crying. His lungs screamed out to let me know he was okay. When they placed him next to my head and I could speak to him, he settled. My voice...he responded to my voice. It gave him comfort, as did he give me comfort in return. 

I try not to compare my boys, but parenting Andrew is a different experience, one for which I'm finding that I have not been prepared. After all, parenting an autistic child is all I know; in many ways, I'm a first time parent all over again. Andrew is more responsive. He wants affection and contact. He loves skin-to-skin time. He nurses like a champ (Jack never did, thanks to his feeding problems he could not breastfeed). He doesn't want to be alone. He actually communicates in the way newborns communicate - crying. 

And Jack? The fears by some were unfounded. Jack is aware of Andrew's presence, but he does not seem disturbed by the occasional cry or other stimuli that a baby can produce. Jack has discovered that baby brothers produce a menagerie of bodily functions that are incredibly loud. He has found that throwing diapers in the diaper pail is fun, because they seem to "disappear" with a turn of the handle. Baby brothers also watch Jeopardy (sort of), so Jack learned quickly that a bit of pre-bedtime TV time might occur if Jack is willing to sit with his brother. 

And as for us parents? We're exhausted in the way that only a newborn can induce, but our hearts are full. Our family is - finally - complete. 

Andrew's birth changes everything. It changes the dynamic of how our family will operate forever. And in a wonderfully beautiful and messy and gloriously exhausting way, I don't care that so much has changed. I've fallen in love again. This boy has reminded me of my capacity for goodness and love and the fierce way that I love my children. 

Children...I have two children. I never thought I'd be able to say that. 

And I couldn't be happier.