Love Letters (Boy Edition)

Tomorrow ends Ryan's first week of school. Each day I've been painstakingly packing his lunches and praying he's eating. Eating is a chore in this house and, unfortunately, I am somewhat limited in what I can send unless I want to drive his teachers completely BSC.

His daily reports have been coming back great and most of his lunch is being eaten. Hallelujah.

On top of the whole, "will he or won't he eat this" nonsense, I have been writing little notes for him each day. Just so he remembers that I'm still here and so that he knows that I am missing him every second of every day. I am not an artist in the least, and after a few days I have exhausted my repertoire of doodles for his lunch box notes. That is to say, I drew a flower, a heart, a sun and a stick figure. And I'm spent.

So tonight I created little love letters to tuck into his lunch box instead. This is much easier than being creative at 11:30 p.m. And the notes are quite cute. I thought some other mommies might be able to benefit from my insanity. Feel free to download a set of love letters and use them with your kiddos. I printed them on cardstock, but you can print them on normal printer paper. Cut along the lines, write a little note, tuck it into your little guy's lunch box and ta-da! Awesomeness.

Enjoy :)

Ryan's First Day

I posted an update about Ryan's first day to Facebook and Instagram, but wanted to just update here quickly also. Thank you (so much) for all of the support and encouragement as our family goes through this transitional time.

Yesterday, Ryan and I waited for the bus in my Vanborghini and he totally rocked the bus ride to school. I buckled him into his carseat and he started to fuss, but that quickly subsided when I handed him a special bin of new cars and planes that are for the bus only. The aide said he played with his cars and counted and talked about airplanes. 

When the transportation company arrived at his school I was waiting there to meet him. I carried him into his school and he took his coat off and walked away from me to go play. And he never looked back. 

I took him to his new school once in December to play in his classroom and attend PE with his classmates and he remembered everything -- he walked down the hallway right to his classroom like that was no big deal. You have to love a photographic memory. 

His first day report seemed to indicate that he did well. It was underwhelming and unremarkable, which is, I suppose, better than a note full of bad news. He ate his all of his lunch (this is huge) and was willing to participate in his individual therapy sessions. I wish the school had gone into more detail about how everything went, but I don't know if any report will ever be able to replace me experiencing his day alongside of him.

The transition has been hard on me. I miss him every second of the day. Our normal toddler activities are still happening, only it's just me and the girls and that feels alien. I've realized I don't know my daughter as well as I thought I did outside of the context of her twinship. A realization that is heartbreaking. We played Barbie's yesterday for the first time and it felt as cool as it did uncomfortable. 

Reese is struggling too. She is needing lots of hugs and lots of attention. Her antics warrant patience, and I am trying so hard to give her the room that she needs right now to adjust. I am not sure either one of us knows how to live in a world where Ryan isn't a constant part of our days. 

I am sure, with time, this will get easier. Hell, we all got used to having 5 therapists in our home 20 hours per week for the last six months and, let's be honest, that's not normal at all. But on Monday when no revolving door of therapists came, it was off-putting. It's funny the things you can get used to. So while this situation is unconventional and, frankly, undesirable, this too will become our version of normal. 

Hopefully one day I won't feel compelled to tell everyone that Reese is a twin, that I have three kids, not two, when we're out and about. But right now I feel like I need to remind everyone that one of us  is missing. 

The Roller Coaster Up

Tonight I will pack my son a lunch in his brand new lunchbox for the first time. I will put in his favorite snack, a sandwich I hope he'll eat, and a cookie, because I know if he eats nothing else he will eat that cookie. I won't be there tomorrow to make him something different if the texture of the sandwich doesn't fit his needs, or if the smell is somehow different. I won't be there to sit him on my lap and help him eat if he's disorganized. I won't be there.

I wasn't prepared for that lunchbox. For picking it out and ordering it. For opening it and making sure all of the food containers fit neatly inside. For explaining to his twin sister that I didn't get her a lunch box because she still gets to eat at home.

Tomorrow a bus will come and pick up my son and drive him to school. He will start a new life that involves spending 35 hours a week away from me, with someone else driving him to his new destination. And I wonder, did I give him enough of a platform to jump from? Will they continue to help my baby develop into the sweet and tender little guy that he was on the path to becoming? Do they know how often he needs hugs and high-fives? If I tell them, will they remember?

Ryan's school is a good one. I hand-picked it after months of touring schools and interviewing staff. It is the right choice for him. For all of us. He is ready. He has plateaued at home and gotten as far as he can with home- and community-based therapy. Now he needs to go to a larger, social learning environment and learn how to generalize his skills. Learn how to keep his language in a crowd of people. Learn how to cope. And he's ready to do all of these things, with help.

But I am not ready. I am not ready to send him out without me. To lose him for all of those extra hours. To trust someone else to guide him and teach him. I am not ready.

I am so, so angry, but I have nowhere to put it. And underneath that anger is a wave of grief so large that when I let myself feel it, I am sure I will drown. I am a fixer and I can't fix this. I can only wait to see what happens and hope. The waiting kills me.

I have theories -- not taking always my folic acid when I was pregnant, the CPC's they found in his brain when I was pregnant, the genetic possibility. I may have done this to him, I may have caused this.

I have guilt -- that I didn't fight harder to get him services when he was screened at 15 months, that I didn't see this sooner, that I didn't know what to look for, that I didn't question the people who were the supposed experts when I knew they were wrong.

I have grief -- that he may never have a wife and children, that he may never have a true friend, that he may only learn the social expectations we have for him and imitate them and not truly have a conversation that makes him laugh so hard his belly hurts.

***
He has so many skills. Joint attention (the ability to socially reference others to follow instructions or see how to do something), eye contact, the desire for approval, seeking out affection, spontaneous and appropriate language, pretend play, imitation. So many good things. But the last few weeks, with the break in his routine, he has been the worst I have ever seen him. Hand wringing, facial ticks, verbal stim, teeth grinding. He got a sinus infection and I noticed that with his illness he started to rock himself. Several nights this week, his disability has been so evident that I have excused myself from the dinner table to go upstairs and cry.

Our therapists, who came to our house for the last time on Friday, have told me that Ryan's skills are so high and so hopeful. They have reassured me that it is unusual for a child on the spectrum to have so many typical skills. They have consoled me and told us what a good job we have done for him so far. They have shared with me that he is one of the smartest children that they have ever come across. That his photographic memory will help him learn so quickly.

He learns skills in a day and generalizes them within a week, which is often a several month process for other kids.

***
We are at the bottom of the rabbit hole looking up. With this next transition, we have further to fall before we can start to climb our way out. I am hoping that there is, somewhere, a way out.

I have put all of my expectations on hold to wait. The horrible, miserable waiting. I don't want to wish his life away. But I want to fast forward to the ending. To know how this turns out. To feel that it will be okay. This will be okay. Instead I sit holding my breath. Waiting. Holding.

I am thankful for the starting point he has been given, I just wish I could give him more. Actually, I wish I could just make this go away. Or take it myself. I would gladly take it myself. Every day it kills me that I can't fix this. I can only hope and wait.

And, in the meantime, I can love him.

Processing

It's no secret that when life gets hard, I get quiet. It's how you know something is really wrong. Since getting Ryan's autism diagnosis on September 9, things have been absolutely insane.

Our au pair, who had been with our family for ten days at the time, quit because she "wasn't comfortable taking care of a child with special needs". Ryan's diagnosis was an excuse, she claimed she didn't know he was special needs. Yet I have several emails from before we matched, the last one having been sent on August 11, explaining that Ryan was having issues and that it was likely that he would be diagnosed with a sensory processing disorder or PDD-NOS (which was recently just lumped into autism spectrum disorder). Literally two hours after I got home from the developmental pediatrician she sat crying and making a fuss in our kitchen. I sat there watching this girl cry, and all I could think was "I can't believe I am fucking dealing with this. Today."

We were supposed to host her in our home for 16 days while she tried to find a new host family. I made it three before I couldn't stomach the sight of her and asked the agency to find her alternate accommodations. For the ten days she was here I ran around trying to make her life easier and help her settle in, when it was really her who was supposed to be here making my life easier. Regardless, I am happy she's gone. I was even happier to hear that her ego was so bruised by me removing her from our home that she flew back to Spain. Her actions both in our home and after being removed from it caused her to be taken out of the au pair program, sparing another host family from having to deal with her self-entitled nonsense.

So while I have been trying to process my son's diagnosis I was dealing with her issues and trying to keep my family afloat without the childcare that we were depending upon for so long. While working, while increasing Ryan's service load, while trying to make decisions about what comes next for him, while trying to find replacement childcare. And so September was the month that I nearly drowned in my own life.

Ryan's diagnosis is kind of a trifecta of perfect and terrible timing. He qualified for services in August, got a diagnosis a month later thus increasing his service level, and we have to qualify him to transition to the CPSE (Committee on Preschool Education) because he will be three in January. It is terrible because each of those things alone would be overwhelming in both information and things that need to be taken care of, together they are almost impossible. Almost.

It is perfect because without the diagnosis we may have had to fight to keep services with his transition to the CPSE, and he would have never seen the service increase he's getting now, which will only help him.

With his diagnosis he's now getting approximately 11-15 hours of home-based service per week. We can see a difference in him already from the month of therapy he has completed, and that was just 4.5 hours per week, so I am hopeful.

I spent the better part of two weeks touring every special needs school available to us, observing classrooms, interviewing staff. It was too much. To see kids with the deck so stacked against them at such a young age. It was just too much. I keep coming right to the edge of falling apart, the tears come and I am able to pull it back again.

I can't seem to make a decision. Keep him at his mainstream school or put him in a special needs school. Separate the twins or keep them together. Keep him where he is until June and transition in September or transition when he's eligible in January. Send him to this school or send him to that school. There are so many decisions and all of them feel like they weigh a thousand pounds.

I am not making these decisions alone, but with all that has transpired with Joe and I up until now this process with Ry has been that much harder. Going through this all without feeling like you have a partner to go through it with. I feel like I've lost everything I thought my life would be slowly, then all at once.

And that's the thing about autism. You are mourning a life you've lost. When you stop and you take a breath and you look up from the paperwork and the decisions and the choices and you try to breathe it is almost impossible, because where you are is a million miles from where you wanted to be. My child is here, he is healthy, but his life will be different -- for now, hopefully just for now. And so my life will be different too. Even though I am mourning the life I had planned, no one died. So there's no one lining up at the door to help out or watch your kids so you can take care of yourself. No one organizing a meal calendar or showing up with dinner. It's life as usual with literally everything changing.

We saw the developmental pediatrician again yesterday for a Q&A since Joe missed the appointment the day Ryan was diagnosed. The nurse there who handled our meeting promised us that we're at the bottom and the only way to go is up. I hope she's right, for all of our sakes.

My Son Has Autism

My phone rang at 9 o'clock this morning. I put the call into voicemail because the house was its usual form of pandemonium and the house phone was simultaneously ringing. As it turns out, the call was from the developmental pediatrician that Ryan was scheduled to see next June. As in June 2014, which was the earliest appointment I could get him. I asked to be placed on a cancellation list, and today there was a last-minute cancellation. I quickly called the office back and got him in for an 11 a.m. appointment. Thank god the au pair is here now and I was able to do that.

Since my brain is a scrambled mess right now, I am not going to try to recap the appointment yet. The end result is that Ryan was diagnosed with autism. My son has autism.

I think I knew this was coming. I mean, I know I knew it was coming. But hearing it wasn't any easier.

The doctor said that Ryan was misdiagnosed at 15 months, that his evaluation team should have caught it then. Hearing that makes me feel guilty -- that I didn't know better, that I didn't fight harder, that I didn't trust my gut more. But more than that it makes me angry, to think that my son could have been receiving services and getting help for the last year and a half.

He also told me that incidents of autism are higher for twins, boys especially. And I couldn't help but wonder if I had not been so desperate to have a child, if I had stuck to single embryo transfers, could I have spared my son this hardship.

Since anger, sadness and guilt aren't useful emotions, since they have no place in determining a solution or making progress, I am going to allow myself to feel these things just for today. And then I am going to put those feelings away and move forward.

But today I am angry. Today I am devastated. Today I burdened with guilt. The sadness that I have with this diagnosis feels almost insurmountable. I am thankful for his health. Please understand I am thankful for that.

But, my son has autism.