This is What our Autism Looks Like

If you were to line 50 children up that were diagnosed with Autism, you would see 50 very different characteristics and behaviors.  Some children would be very apparently autistic, while others would appear "normal".  The autism spectrum reaches wide in both directions.  It is often misdiagnosed.  It is also over-diagnosed.  It also gets used to diagnose children whose behaviors and symptoms don't seem to "fit" in any other category.  Whatever your beliefs are about autism, I believe it to be real and I know that it simply sucks.  It's hard on the family who lives day in and day out with the son or brother with autism.  It is difficult for teachers to "reach" students with autism, never knowing what kind of mood the child is in, what kind of morning the student had before arriving to school, or whether or not the student is still fixated on something that happened 2 weeks ago but he just can't let it go.  The Sunday school teacher works harder and prays fervently hoping that her message reaches and penetrates your sons heart.  But how can you know that he is receiving the message when your son seems to be void of emotion?

A few weeks ago, our son Oliver, was diagnosed with Autism.  I have known he was autistic from the time he was so small, but nobody would listen.  Even when he was just a little guy and still our foster son, I took him to the pediatrician.  I was told he was just a "spirited" child and that I simply "didn't know how to handle that type of child and I should re-consider fostering."  In the foster care system, if you actually do your job and advocate for the child, you risk them being removed from your home and sent to a home where the parents are quiet.  We loved Oliver and I didn't want to take that risk.  So, I quietly loved him, nurtured him, and cared for him.  I did all of this while constantly worrying about him.  There was a part of me that hung on to what the doctor said.  Maybe he is just spirited and he will grow out of it.

Adoption Day

But he didn't.  When he had just turned 5, I took him to a therapist and she conducted an evaluation that took many hours over the course of several weeks.  It was at that time that he was diagnosed with ADHD and anxiety.  Duh.  I knew he had to be ADHD because he spent most of the first few months of Kindergarten standing on his head!  She also warned me that because of his young age, there may be other issues present but not able to be diagnosed then.  Still, no autism.  But, I felt a little bit better and somewhat vindicated.  He would now get some help so he could focus in the classroom and be a little less nervous.  Again, I convinced myself that once he could calm down, he would grow out of it.

But it didn't.  Forward to now.  He is 10 years old.  Full of energy, curiosity, creativity, and spunk.  However, he is also plagued with fear, fixations, awful short term memory, impatience, and intolerance.  Now that Oliver has entered the fourth grade, it is as though he has hit a wall.  Sure.   He has always struggled socially.  Reading comprehension that required him to make inferences were always difficult.  But this year everything was harder.  Re-directing his fixations, academics, social situations, family life, being more tolerant......EVERYTHING was harder.  And although he was in therapy and medications were being adjusted, Oliver was still struggling in a big way.  We were searching for anything to be a success for Oliver.  A child can only feel defeated for so long before he gives up entirely.  I feared that more than anything.  As parents, Bruce and I were searching big and wide to help Oliver feel proud of himself.  At the suggestion of the therapist, we had Oliver re-evaluated.  It is suggested that children who suffer from the kinds of diagnosis that Oliver does, it is wise to have these evaluations conducted periodically.  Especially when the behaviors seem to be more intense as time goes on.  It was during this recent evaluation that the ADHD and anxiety was confirmed.  But now, also autism was diagnosed.  And while I was not surprised by this, I was still deeply saddened.  Because, my fear was realized and now I had so many more questions.  But oddly enough, I couldn't think of a single question.  I was numb....and scared.  I left her office with a 36 page report describing my Oliver and why he was diagnosed with autism, and still, my brain was mush.

I have had time to let this sink in and formulate some thoughts and plans.  This diagnosis doesn't really change anything.  Oliver is still Oliver.  And we still love him.  But now, perhaps is explains a little bit of his behavior.  He's not a "brat".  He's not a "bad" kid.  He's not "spoiled".  He's not "crazy".  You can put whatever label on him that you want, but at the end of the day, he's Oliver.  And yes, he happens to wake up each day with struggles that aren't his fault.  But don't we all have struggles?  But he has a family that loves him and will do absolutely anything to help him be the best Oliver he can be.  But don't we as parents, do that anyway for all our children?  I can now embrace this diagnosis and move on.  One day soon, we will explain this lovingly to Oliver.  Maybe it will answer some of his questions about why he feels different.  I am thankful to live in a school district that is ready and has the resources available to help my Oliver.

One of the big struggles that Oliver faced was sharing a bedroom with his brother Carter.  We have enough bedrooms for each of our sons to have their own room, but Carter didn't want to be alone.  Carter still gets scared being alone. He likes the lights on while he sleeps.  Oliver likes it very dark.  Carter likes a fan on no matter if it is winter.  Oliver likes it super warm.  Carter wakes up extremely early.  And although he tries hard, Carter just can not contain his noise and happiness in the mornings.  He wakes up singing.  Even his smiling seems to be loud in Oliver's opinion.  It doesn't help that Oliver is very sensitive to noise, movement, and light.  Carter doesn't even stand a chance.  I can not even begin to tell you how many times I have heard Oliver scream out "Stop being happy" or "You are so annoying" or "Mom, make Carter stop being happy".  Therefore, my husband in all his wisdom, came up with the awesome idea of building a partition in their bedroom that would separate them while still sharing a bedroom.  It was his hope that both boys would be happy with this arrangement and allow Oliver to sleep more peacefully and sleep in on the weekends.   I was envisioning a simple wall.  But for anyone who knows Bruce, you know that he goes over and beyond with anything that he does.  He loves his children immensely and he works tirelessly to provide for their needs and pour himself into them.  This wall quickly turned into a bed hutch, a desk, and a set of shelves and cubbies for both Carter and Oliver.  Their rooms are small now that the partition has been built.  But each of them has their own space now and I am happy to report that this was a total success.  Oliver is so much happier now and has his room warm, dark, and quiet.  Carter is also thrilled with the arrangement.  He has the closet light, a night light, and Star Wars lights hanging on his side, the fan blowing in his face, and his noise doesn't effect Oliver in the mornings.  The partition is 6 feet tall, 8 feet long, and 3 feet wide.  Bruce put a lot of love and labor in this project, and it was a complete success.  Bruce's next project is to make a dedicated homework station just for Ollie.  You see, there's not much Bruce wouldn't do for his kids.  (He's good to me too.  On this list of his projects is making me an upgraded craft area).

Oliver's Spider-Man room

Carter's Batman Room

Our autism looks different each day.  But there are some things that are always present.  While Oliver sees even the smallest detail, he misses the big picture.  He can tell you about characters in a book but can't tell you why the main character is sad.  He doesn't understand facial expressions or the feelings and emotions that cause those expressions.  He can remember how to build a Lego project without the instructions, but can't remember sometimes how to put on a shirt.  He gets stuck on a topic and nothing else will penetrate his brain until he has told you every fact he knows about a T-Rex.  He can be moody.  He can be intolerant of others.  His logic makes no sense to me.  Eye contact is rare.  Any noise can set him off.  Shirts with collars or tags will paralyze him.  But I know that Oliver was perfectly and lovingly made by God and there is a plan for his life.  I also know that Oliver is supposed to be in our family.  We love him fiercely. 

The Fog is Lifting

Well, it's been a while since my last blog. But so many things are happening, and I am happy to report, good things. The boys are beginning to settle in, Beau and I are finding a routine that works, and our family as a whole is feeling mostly calm again. Is is abundandly obvious that a good dose of family unity was needed. Beau is learning to balance work and family and I am learning to have a little more patience and acceptance. These things combined, and we are doing much better.

Will and Oliver began playing their first season of soccer in September. So that means we have 3 boys playing on 3 different leagues, at 3 different times, and in 3 different locations. This was a tricky feat since Beau and I only make up 2 people. But we managed and the boys enjoyed thier season. Will started off showing no interest in playing. In fact, his favorite part was eating snacks on the sidelines. But as we approach the end of the season, Will has started showing interest in the game (well, with a little bribery from Beau. The kid will do anything for Skittles!).

Oliver, with the exception of a couple of games, has showed serious interest in soccer and we are finding out that he is quite an athlete. That boy shows natural ability and skill on the soccer field and he is so much fun to watch. But the best part is that huge smile on his face as he kicks the ball with such determination. Ollie has a strong leg and an amazingly accurate aim.

Zander, of course, has played soccer since he was 4 years old. This season, he is playing on a league with kids aged 12 to 16. As you can imagine, there is a huge range in skill, size of the kids, and speed. But, I am proud to report that Zander has held his own.

He has dribbled that ball with such agility and precision, he has won out against some of the other older skilled boys on the team. Watching the kids play on this league is so exciting because of the athleticism on the field.

Oliver is finally potty trained. That was a huge feat because he can have a stubborn streak. But when he finally conquered #2 in the potty, which happened to be at a busy restaurant, Oliver came out of the restroom and announced to the entire restaurant that he "pooped in the potty". Strangely enough, I wasn't embarassed. I was so completely proud!!!

There is something quaint about small towns. They have some of the best little festivals and we sure have enjoyed each one of them. We are learning that it doesn't take the big fancy things to impress children. It's the simple things. Take picking out their own pumpkins for starters. We went to a real pumpkin patch recently. The people tending the farm handed us a pair of huge clippers. We actually got to cut our own pumpkin from the vine. Sure beats out the previous pumpkin picking we were used to that consisted of going to a local church and picking out one that was already cut, cleaned, and sitting nicely on a display. We then took the pumpkins home and painted them.

Each boy wanted a different color. My intention was to paint their footprints on each pumpkin and turn them into "friendly ghosts" but the boys lost thier interest soon after painting. They found that rolling down the hill in our front yard was far more fun. Boys!!!!

My best friend, Cami came and visited. Beau took some time off of work so that he could keep the kids and allowed she and I to go play for 4 days. I had an amazing time, but more importantly, I had some much needed girl time.

We are now talking about making this an annual trip!

Things are finally beginning to feel like a family again and we were becoming comfortable. Then, we had an unusual October New England snow storm which left us without power and running water for several days. The boys loved the snow. And surprisingly, Will, liked it the best. They are now pros at sledding down our hill. Our little Carter, we have found out, is a daredevil. We are going to have to watch that kid. We are now taking bets on who will be the first boy to visit the ER. I guess I better find out just where the hospital is located. Hmmm.

During this experience, we got some more bonding time with Beau. Beau was home from work, with no computer (so he couldn't work from home), so he got to give us his complete undivided attention for 5 whole days. It was awesome. We spent time with the kids just snuggling in front of the fireplace.

We talked. We played. We ate our dinners by candlelight. Thank you God for this time we all had together. However, I really thank God for our restored power and running water. I think I like electricity and flushing toilets.

Until next time.......

What Now?

I did it. I survived 8+ months of being a single parent with 3 small children while Beau and Zander were in NH surviving bachelorhood. Everything that I prayed for, cried about, became angry over, laid awake at night and thought about, and dreamt about has finally become a reality. I am sitting here in New Hampshire, the proud mother of FOUR Bennett boys, and a husband that I get to sleep next to every night. A state that has real seasons, snow, beautiful colors in the Fall, and mild Summers. There are rolling hills, huge shady trees, wildlife in my own back yard, no traffic, sounds of nature....everything that this girl has been anticipating and looking forward to for months. So if this is everything I could want, then why am I so unhappy. I mean, don't get me wrong. Of course there was the initial excitment of knowing that this is actually home and now that includes 6 family members. It was awesome walking into the house the other evening and having a huge weight lifted. No more social workers, no more being under the microscope, no more sleeping alone at night, no more wiping away tears from my boys' faces as they cried for their daddy, no more juggling everybody just so I could go to the grocery store, no more fear that someone is going to just show up at the door and see the "real situation". That situation would be kids running around, sometimes fully dressed and sometimes not. Dishes in the sink. Laundry everywhere...and usually not folded and ready to be put away. Food crumbs from breakfast still on the floor. Allowing the tv to babysit my kids just so I could have a few minutes to get re-energized.

I had very dear and loyal friends keep me going during the last 8 months. Food was brought to me, encouraging conversations over the phone keep me pepped, maid services was hired on my behalf, and friends often times babysat so I could attend court hearings and doctor's appointments. A group of ladies came over about once a month to my house at the kids' bedtimes and just hung out with me. Those times were so precious to me and were sometimes my only means of survival for the next week. My friends are the absolute best that anyone could ever ask for and I so did not deserve them, but I certainly did appreciate them. They were all great at pumping me up and telling me what a wonderful mom I was. It did make me feel good for a while. But now, now that everything is becoming real to me, I am beginning to see things much more clearly. I see that I allowed bad behaviors to develop because they went unpunished. I see that bad habits went unchecked. Our mealtimes were no longer the "sacred family time" that it once was. We ate every single dinner at the table as a family. This is when we prayed as a family while holding hands. And believe me, when we prayed, we were all truly thankful for that day. I got to tell Beau about the day's events and the funny "boy" stories. Zander shared about his day at school. The boys even chimed in. Often times, Beau would lead everyone in silly songs (after we were done eating of course). This is the one time of the day where we were all united and whole. But all that went away when Beau left. It didn't have to because as the mom, it was my responsibility to carry on those traditions for my kids. But I didn't. I was too self-absorbed in my own self pity.

Schedules and routines were a thing of the past. There no longer was any rhyme or reason to how I did things. Children thrive on routines and that is just one more thing that I failed my kids. I knew what I was doing was wrong. I even knew what things I needed to do to correct them. But I didn't. I had every excuse in the book, but the ugly truth was that I had stopped caring.

Now, here I am. As I see it, there really are only a couple of choices I have to make now. Beau and I have made commitments to each other about deleting the bad habits we started while apart and replacing with the good parenting skills that we used to have. It is going to be hard to re-train the boys, but I have faith in God and faith in my husband that we can do this. The alternative is simply not a choice for us. We love each other and our children too much to not make the appropriate changes.

So now, Beau and I have to learn how to be a married couple again. We have to buckle down with the finances again. We have to parent firmly but lovingly again (with consistency). We have to re-insert routines again. We have to learn how to communicate again. We have to live together again. All of these things are wonderful things. The "have to's" will soon become "get to's".

I learned things about myself during the last months. I totally rely on Beau for far more than I ever thought. I do believe that a man and a woman should parent a child together (if possible). I am much weaker than I thought. I am much more stubborn that I thought. I am fully capable of becoming an emotional wreck and irrational at a drop of a hat. Organization is absoltely vital for MY life. I pray that God does not separate Beau and I again. I do think that 4 is enough. I don't like paying bills. I hate killing bugs, pulling weeds, and taking out the trash. Every noise that I hear at night just means that the "boogie man" IS real and he IS out to get me. I watched over 140 episodes of Scrubs and never grew tired of the show. I like sleeping in the middle of the bed with ALL the pillows. But most importantly, I adore my husband and appreciate all that he does.

In the meantime, thank you so much Cami Franklin, Patty Fogarty, Lauren Palombo, Tina Jamieson, Betsi Torres. You guys loved me when I found it hard to love myself.

I do look forward the the next chapter in my life. I do embrace a new state, new family member, all new experiences, new everything. In fact, I am excited. Just writing this blog was completely therapeutic.

Until next time.......