In The Deep Deep Dark

It has been a long time since I have felt moved to write here, felt like there was anything worth sharing.  I can’t really say why now is when I am.  Maybe it’s because its late, I can’t sleep and I have been staring at my phone for an hour clicking on Pinterest posts and falling down that rabbit hole.  Maybe its because I have recently realized/had it pointed out that I am not handling things as well as I thought I was.  Or it could be that I finally feel ready to talk about some things.  I don’t know.  If you are here, if you are reading this thank you for caring.

Lets rewind a little.  My last post was a love letter from me to my boys. I meant every word, and still do. Lately it’s been hard to push past all the negatives to live in that love.  When I say lately, I mean not too long after I wrote that letter things began a swift decline.  I didn’t know what to say, and I still am struggling with how I feel about everything now.  When things in my life get rocky I try to approach it with an attitude of openness and honestly.  Often I say things that get me looks from a crowd but I am a big believer that you give power to the things you hide.  If we say those things out loud then they become less scary.  They become something that others can ask about, something that’s ok to discuss.  So here we go.

My oldest, max, is not doing well.  In the years past there had always been ups and down with him emotionally/behaviorally.  He would have a bad month and then a good one, or sometimes longer stretches.  The past several months have not been good.  We are now grasping for good days, good hours, good moments.  No one is suffering more than max because of it, but as a family we are all feeling the effects of it.  His younger brother is starting to mimic his actions and words.  I am at a loss with how to respond to him most of the time because I truly don’t know what to say.  If I ignore it then I am not giving him attention but if I respond it escalates.  We all live in suspense of when he next outburst will be, when the next negative thing will come out of his mouth.  It feels like we live in a parallel universe to all the people around us because what everyone sees in snippets is this beautiful little boy who just looks a little unhappy.  No one knows how deep it goes except for those closest to him and it’s breaking our hearts.

Max is unhappy with his life all of the time now.  He will say it out loud in moments of clarity that rip my breath from my chest.

“Why and I so angry all the time?  Why am I so unhappy? ”

He hurts himself.  Sometimes he will slap himself in response to and answer he doesn’t like, or scratch his face.  Sometimes its with a closed fist over and over till we tell him to stop.  Often when he is in the midst of a meltdown he will slam his hands into the floor, kick things.  Towards then end of the school year last year he was picking at scabs on his face and hands so much he now has scars to show for it.  He ripped out two teeth before they were ready to come out. He appears unhappy most of the time. If there is something he wants to do or a need he wants satisfied that is not met immediately, all this comes to the surface.  There is a constant stream of negative self talk that doesn’t end.

“I am so stupid. I am so dumb.  Everyone hates me.  You are saying I am not needed.  I want to die.  I want to kill myself.  I don’t want to live here with you.  I hate my life.”

There is nothing that will crush the soul of a parent that words like these coming from their child.  He isn’t saying it because he is trying to manipulate us.  He is genuinely this unhappy all of the time. I would empty my bank account, empty my body of blood and marrow to fix it.  My husband and I talk about this nightly after he goes to bed.  What do we do?  What can we do better?

I feel like I am sucking at this mom thing.  I don’t say that for a response, it is genuinely how I feel.  I am so strung-out-on-edge over this that I am constantly in a state of low-grade irritation with him.  He is always unhappy with me, and I never know how to satisfy him.  When I do, the next hurdle is lurking insidiously around the corner.  My body is knotted up with tension until he is peacefully sleeping at night.  I thought I was managing  until recently when talking with some of my friends.  I have become withdrawn this summer from the people around me, which hasn’t been fair to them or myself.  I am still trying to work out why I do this because it doesn’t serve me at all.  When things get hard I back off of everything until I feel like I have a good grasp on the problem.   I pull back and get quiet.  Truly, I never realize consciously it is happening.  Normally I share my every thought/emotion on any other topic so not being able to articulate the BIG things is confusing to me.  I still haven’t really worked out what to say on this whole matter.  When talking to a friend recently she pointed out that when people ask how I am, I answer with whats going on with max.  How max is suffering through this shit.  I never answer with how I am.  My knee jerk reaction was that couldn’t be, I am so honest about whats going on.  I tell my friends everything.  It hit me a few seconds later as I tried to articulate my feelings that I really don’t know what they are.

After really letting this sit in my head for a few days, this is what I have come up with.  I feel like we are in a waiting room, biding our time until it’s our turn.  Max is going for a full neuropsych eval in three weeks to see what we are missing mental health wise.  I feel like until I get the results of this I am on pause.  Holding my breath for a plan of attack, a compass with some direction to it.  I can’t think too much about the future, because when I do I go to a crazy place that’s not helpful.  So I lock those thoughts up in a vault I try not to open, because if I do I won’t be strong for my family.  I can’t fully admit out loud how worried I am because it makes it too real right now.  I don’t know what to call the monster that lives inside my son’s head.  Once I have a name for it, then we can talk about it.

For now, he is in therapy.  I will be starting soon also. (you all can breathe a sigh or relief, I do realize I need it and it is a priority.)  He is having regular check in appointments with his Dr. at the Lurie Center.  He has started medication (not that we are seeing any difference, but we are just dipping our toe in that pond.)  Coming to that decision was incredibly painful for us as parents but it was time.  He starts school in two days so he will have a steady routine soon.

Its time to come out of the deep deep dark.  We can’t pretend we aren’t suffering, or that things are easy.  I will talk about it if you ask as best I can.  I am working hard on being better to those closest to me because pulling away wasn’t fair to them, or to me.  We are here just trying to make it through the best we know how.

With love, caffeine, yoga and the people who refuse to leave when the shit hits the fan.  People like you.

Autism Squared

We went last thursday to Boston Children’s to get Jack tested in their Developmental Medicine division.  As previously mentioned, the appointment was very fast this time, it took only a month of waiting versus the 9 months we waited with max.  The results came back much faster as well, both Craig and I were shocked when the dr told us he would see us six days later to give us the report.  I was stunned speechless for a moment which never happens to me.

Craig and I met there, a half hour before the appointment.  The last time there was such a massive build up of emotions.  I had been called out in so many different arenas for thinking something was off with max that getting that diagnosis was like getting my sanity back, mostly.  WIth him there was the massive release of emotion and I could take comfort in the fact that as his mom I knew something was off.  This time with Jack I didn’t feel much of anything leading up to it.  I was massively curious what they were going to say.  I wondered if jack would show them everything that we have seen at home.  I wondered if they would take them as seriously as I did.  Just in the past week there had been new concerns that have popped up at home.   I was kind of in the middle.  It wouldn’t have made me upset either way, I just wanted to know what I am up against.

My other main focus was the chocolate croissant that I was going to eat.  If I was to be perfectly honest, this was my major concern.  I have dreams about buttery flaky pastry containing chocolate.  With every major hospital visit we have had there is an Au Bon Pain within my eye sight and I am drawn to them like a moth to flame.  Over the past year I have lost 40 pounds, but my inner fat girl gets super excited when I see that sign.  It makes me happy.  Pastry makes me happy.  Incidentally, if you can get to a Trader Joes they sell them in the frozen section and they are to die for.  For real.  If you ask any of my girlfriends what I said when they asked if I was nervous about last Thursday’s appointment, they will tell you my only concern was getting that croissant.  Priorities, people.

Which brings us today.  Jack was also diagnosed with autism.  There were a number of reasons that I won’t go into but there it is.  I have two autistic children.  With max I was so emotional and relieved, I cried off and on for days.  This time I don’t know what I feel yet.  I know that it means a lot more work for me.  I know that he is still the same redheaded devilish child I left napping when I went to boston this afternoon.  I can’t help but be a little sad only because for a brief time with him as an infant I thought he may be the one who doesn’t struggle like max will.  My one typical kid.  That pipe dream flew out the window pretty fast once he started talking.  I work so hard with max and it is sometimes mentally exhausting, sometimes physically.   Now there are two of them so I guess I am mourning the image I had in my head when we first started having kids.  I think most parents do this because we never fully realize how tough things get once they develop past infancy.  I may just have it a little harder, but certainly not the hardest ever.  I also know how much more work I will be doing, and time that will be spent teaching jack and I am choosing to not think about that tonight.  Not yet.

There is also a part of me that is incredibly proud of this quirk.  I know that my children will see things in the world that most people will miss.  They will remember things I wouldn’t think to.   They will change people’s minds about the face of autism.  The image a lot of people have even with the boom in research and education about autism is the non verbal child who can’t care for himself.  That is not my kids.  They have autism but its high functioning.  I hope that they can enlighten people as to what that looks like, maybe help other parents dealing with a recent diagnosis to know that autism doesn’t mean anything flawed or damaged.

When we got home I told max that we found out today that jack was just like him.  His response:

“I know.  I have been around a lot longer than jack, I know he was just like me.”

Big words for a little boy, but there is autism for you.  See through all the bs and nail it.

 

 

Back to school

Thank GOD. We had a wonderful summer, but the last few weeks were hairy. Once macs summer “camp” ended at his school we had no routine and he was a hot mess. Routines and autism are besties, in case you didn’t know. We went on a family vacation and it took three days of max not napping for me to almost snap…..and then run out to buy some rum.

Taking a family on vacation when one of them is like max can be a gamble. While he loves his vacation bed and the beach by day three of trying to have all it was made very clear that although we were in vacation mode, max’s autism wasn’t. He still needed a nap, and I probably should have brought the sensory sheet for his bed so he could calm his body down. I really struggled because I look around me sometimes at all the other families and I just wish for once that we could just do things. Not have a plan, go to a crowded place to see things and not watch my son filled with sensations his body can’t make sense of and having a meltdown. This is the only part of my life as max’s mom that I constantly struggle with. THe way I want to do things and the way that will be the best for my kids.

I have these idyllic memories of the cape house from my own childhood, and part of it was going to the bakery right down the street with my sister. I was so excited to take max there and make it a tradition with him. I do this every now and then. I plan something in my head forgetting about him and how he will react to the environment. If the seasoned special needs mother in my had thought about it I would have known that the amount of people, noise, and the tiny room would have set him off. In my head though, it was rosy colored and full of sunshine. Max with big smiles as he ate his donut and me cherishing the moment with him. I will give you one guess how it went. He was a disaster and I got so angry it was hard to be nice to him in the moment. I was furious at him for ruining the moment, something i wanted to make special. We walked back and by the time we were at the cottage his tears were dry, and the ones I couldn’t shed in front of him were gone too. once I sat back and looked at it calmly later I was so ashamed. I was mad at my four year old for being who he is and wrecking my hallmark moment. I should have just been mad at myself for being such a moron and expecting it to be different. These moments happen every now and then as parents. When you are humbled by how little you have learned even though you feel like you have it together. We got over it and later that day Max learned to ride a bike without training wheels, and the tears were happy ones.

September is here, bringing with it the return to school. He has only been back for 2 days but already he is much happier. He is going five days a week, riding the bus, seeing the bcba once a week and i am so relieved. I feel like all parents look toward the return to school at the end of the summer but my joy may be at another level. I am so happy to see max happier.

I wasn’t going to make this public, but september also is the onset of another season of waiting for us as a family. At Jacks 2 year old check up I filled out some forms and his dr recommended that jack be tested for autism as well, since he has some of he same characteristics. I just sent all the paperwork to children’s hospital on wednesday. Much the same as max I don’t have lots of “feelings” about this, I more just want the answers. It won’t shock or devastate me if he is. It will just be more of the same, and I think as I learn the better person I am for it. I am the perfect mother for my kids. Not a perfect mom, but perfect for them and thats enough.

Mom Rage

It’s been ages since I have written anything. After we figured out the stuff with the school max quickly fell into a routine that he loved. He got to ride the bus, which in his eyes makes him the cats ass. Max delights in telling everyone he meets that he rides the short bus, much to my delight. No clue that it’s an adult expression that means a whole lot more, he has taken it and made it something to envy. He made some new friends in his new class that are very sweet little boys who think max is the cool kid, word that came straight out of one of their mom’s mouths. I watched him at his end of school picnic running and playing with them and it was amazing. Probably 75 percent of the time he was on his own in his head but 25 percent of the time they were talking, laughing and rolling around. We had to leave the musical part early because it was way past nap time for his little brother, but I got to see max being the kid that the other kids wanted to sit with and even inviting others that were sitting with their parents to be near him. It showed a side of max that makes me so proud. He has his blinders up a lot of the time with people but when they come down he has an enormous capacity for sweetness that I hope never gets diminished. He has come a long way in such short time. School has helped so much, the classes at the sensibility gym taught by my bestie have improved him, summer school he is attending now is keeping it going. All the pieces that fell into place with the official diagnosis have been changes that were so needed.

I have been trying to work on myself a lot as a parent. The adjustment after the elation of the answer wore off left me a little deflated. We had the answer but it didn’t change max or me fundamentally. He is the same boy with the same challenges and I am the same parent that is easily frustrated. The biggest thing I have tried really hard to work on is my frustration and tendency to want to yell. He is who he is and as his mom I know how he will react in some situations. Getting pissed at him and short tempered when he acts the way I know he will is pure idiocy on my part and I accept this but its still really hard for me. Watching him “play soccer” became so difficult for me that I dreaded it and if craig was home I would make him take him. I know that for him working in a group to complete a physical task that requires concentration and total body coordination is incredibly difficult. I would sit on the sidelines and be filled with frustration directed at his orange hat on the field. I was totally the mom screaming out directions while all the other parents of the autistic kids sat in their chairs and only spoke to their kids when they came off the field. It took me to the end of the session to force myself to shut up and watch the wonderful people out there adore my kid and be patient with him. I truly wanted to force him to listen to them somehow, to do what they asked of him. All they wanted from him was his time, and they paired him with the most patient 17 year old boy with a beiber haircut who never looked at max like he was annoying. This was a really hard pill to swallow as a parent. Strangers were treating my kid the way i should have been but I couldn’t. This is my lesson I will learn over and over as a mom. I am the adult and I know that that my kid is who he is and can modify some of his behaviors but not who he is at the core. Expecting him to be the opposite of who he is at his core is me being a MORON. This is a lesson I will need to constantly remind myself of over and over and over.

It’s really hard to be patient. Its hard not to scream in frustration. Sometimes it is incredibly difficult to enjoy being the parent of a kid that is different. It is hard to use a nice voice. It is hard to sit in the quiet after they go to bed and think of all the ways I could have been different. This is the stuff that tortures most parents but I think I take it to another level some days. The last few months I have been actively trying to be a better mom and accept who I am, faults in all. The thing is, I love max for all his quirks and weirdness. He is so different and shockingly smart about the weirdest stuff. I am the adult. I need to alter myself, not try to make him be a totally different kid.

Some people take this to another level and just let their kids flow. This isn’t me (obviously), I believe in a more ABA but accepting who he is approach. The lines of this aren’t defined which is part of my frustration. It’s a tough balance to find but as the months pass I am getting more of a handle on it. I have considered and accepted that as he gets older I may need some meds for myself every now and then when I want to explode and I am ok with that. End of the day all that matters is that they know I love them so I make sure I say that to both my kids multiple times a day. I hope that he remembers that when he falls asleep more than my mad face!