Windows to the soul

 Out of the twins, my son is really withdrawn. At the playground he focuses on toys and structures, his giant eyes hiding behind his beautiful chestnut hair, shutting out the whole world around him. Yet is spite if it, my little angel is actually comfortable around people and really social. He says hello and goodbye at times, and cuddles constantly and looks at people in the eye.

He stayed longer in the NICU due to the SVT, and I often wonder if that's what caused such a void between us. I feel like he is a million miles away, and the more I pull in the more he pushes me away. From birth he was handled, poked, strapped, submitted to all kinds of tests and  I really believe he remembers it, and rebels against it. He is really physical, he bites and punches and kicks.

Today we had a consultation for the Genetic doctor who will be testing for fragile X along with other enzymes to see if James is going to have it. At first my son was somewhat behaving, and then when he started to be handled he started to lose it. He fought so hard, turn red, screamed and then he looked at me with those brown big eyes and asked me to help him. I've never had him ask something from me so clear and direct. I wonder if he will remember I let go and held him.

Truth is, my son is my miracle baby. I honestly though he might have not made it. I remember holding him skin to skin under my nightgown when he was 4.5lb and singing and ask him to be strong, because i couldn't live without him. To this day I really wish I could endure all this for him, somehow take away all of it and put it on my shoulders. I wish I could just endure it all for him, be the one held down against her will while she gets examined and poked endlessly to make sure everything is OK. I wish I didn't have to look into his eyes, and tell him he needs this and know he is just asking for my help and I am letting him down.

Those gorgeous dark eyes that sometimes feel so empty. Cold, detached. Emotionless. Does he really feel that way? Because I see him cry when something stresses him, and be very emotional. And very animated. Yet many times, I wonder of he really sees me. If he feels anything about me as he looks into mine with such a blank expression. Maybe it's in my head. Or maybe he is disappointed I can't defend him the way he wants me to, or if he knows I am as helpless as him in this. Or maybe he is just lost in his world, and can't see me trying to drag him out. 

Eager to communicate

One of the big challenges for the kids are parks. The twins are really, really active yet have a very hard time being surrounded by large crowds. James starts to put his fingers on his ears yelling "out", throwing the worse tantrums while my daughter really wants to socialize and play with the other kids.

On father's day, we went to a pick nick to a park with the family. It was a huge park, with amazing chair swings, bouncy house, and a round rocking thing you set on with a big group of kids. The park was packed. First thing I did when we arrive was jump on it with Eliza! There were other kids there trying to make it rock but failing to do so, and since I was the biggest heaviest person there (which is a very rare thing mind you, I am 5'1 and 115lb) I started to rock it back and forward. The kids got all exited, and Eliza was having a blast. My husband was with James, who wanted desperately to get in one of the swings that where shaped like a chair, but the there where two girls there. We had to physically hold him while he kicked and bit us, otherwise he would have lounged himself into the swinging chair and gotten really hurt. As I am rocking with Eliza, I see my husband start to lose his patience with James and I yell out " Let's switch places!". I go down, and try to play with James who's screaming and just not understanding he has to wait for his turn. Finally after 45 minutes he is able to get into a swing, and he is happy.

I look over, and I see a lot of parents gathered at the rocking structure. I see that the kids are introducing each other to their parents, and then I see my sweet baby girl get up, and grab daddy and face the other kids making guttural sounds, trying so hard to be part of the parent introduction. I literally felt her desperation, and she is really that way you know, she tries so hard to communicate yet she just doesn't know how to. It just doesn't come to her.

In that moment, I realized what I was really up against. At 2 and 1/2 she still calls everyone "mama" yet she recognizes me, and is able to understand that at that moment, everyone was introducing their parents and her daddy was there. It's so basic, yet has such a hard time with it. So far I tried everything to get her to say anything, heck baby babble would be great at this point. What do you do when your kid just doesn't get it? How do you handle it? What can you do really? She's the one who needs to figure it out while you helplessly witness failure after failure, frustration, disappointment.

At that point, my husband grabs her hand and simply says " It's ok honey, I am your daddy" and says hi to the kids, making her whole face brighten up. And I start to wonder if  what is like being trapped inside unable to clearly communicate your thoughts of feelings. What it's like to see all the kids around you be able use such basic form of communication, yet be unable to use it yourself. I wonder how aware of it she is, or how lonely it must be.

And if she will ever be able to tell me.

As the fog descends

“Through the blur, I wondered if I was alone or if other parents felt the same way I did - that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that - a parent's heart bared, beating forever outside its chest.” ― Debra Ginsberg

My heart shattered the moment I was told my son had failed the Autism screening at his Early developmental Assessment in April of 2012. I knew my kids where different, but I thought twins where different in general, that's why they call them "double trouble". They never did connect much with me but they connect with each other in a "they get into each other's cribs to cuddle" kind of way.  How do you look into those angelic, big animated eyes thinking there is something wrong with your babies?

My husband and I went to this evaluation with both the twins. They were born preemie, after I had an emergency c-section at 33 weeks due to preeclampsia. My organs where shut down and I had one hour before I started to seizure. I was so sick, I was not able to visit them in the NICU for the first 3 days after their birth. Two weeks later, the night my daughter came home to us, my son had an SVT ( Supra Ventricular Tachycardia) attack that put him on heart medication, and was attached to to monitors when he finally came home to me a month later. And through all, I couldn't think about anything but keeping them alive and healthy. Yet in that evaluation room I was told that not only my son (who qualified for the screening because of the SVT) failed the screening, but my daughter was displaying Autistic behavior and severe delay too. 

I was bombarded with lists of tests varying from genetic to auditory, and a contact for the Autistic Evaluation center near me. The moment I walked out if that office unable to hold back any tears, and just unbelievably heartbroken. 

Ever since I finally started to see what everyone was talking about. The obsessive spinning of wheels, the outrageous tantrums and their inability to follow commands. It was like suddenly a thick fog was cast on my beautiful babies, and through it I could see only a glimpse here and there of them.

I got really on top of all their appointments, evaluations and therapy and I am on every waiting list imaginable.   it's July, and they will be starting therapy soon. They are very delayed on everything, some ranking 90% like speech, yet if you meet my kids they are very "high functioning". They eat and run and try so hard to communicate. 

I wanted to start a blog about my journey through Autism. I get so caught up trying to do therapy with them at home. following a strict schedule, trying to make sure they are making progress- ANY kind- that I forget that this is something completely emotional to me.