A Day at Sesame Place

Today we kinda took the day "Off". We needed just a day as a family. All of us together. Nick, Olymbia,Sophia, Gregory and I went to Sesame Place. It was so wonderful. So much of our time has been in seperate units. Gregory is usually with one of us and the girls with the other. It felt so good to just enjoy the day together. We all had a blast. The girls Loved the water and actually Gregory enjoyed it too. The one thing that suprised me the most was that he loved the characters. We got the most precious picture of Gregory sitting on Bert and Ernies lap. He went up and gave Big Bird a high five and shook Elmos hand. The girls got a great picture with Elmo! I am so glad we decided to go. I almost backed out at the last minute thinking it would overwhelm Gregory but he did Great and loved every minute of it. Hopefully he sleeps good tonight!!!

A Ticking Clock?

This morning was very hard for Gregory and I. For some reason we were not clicking at all and by 11:30 he was crying night night. So I put him down for his nap. I think he was overwhelmed and wanted to get away from it all. I called Jennifer (our RDI consultant) in tears. She has explained to me many times that I need to slow way down and if things aren't working to let it go. She has told me many times that there is no ticking clock and that I can't prevent Gregory from becoming autistic by doing more therapy. Well I do understand this concept but for some reason I can't get it to sink into my brain. Ever since we started with intervention about 14 months ago I feel like I have been fighting a battle. I wake up in the morning armed and ready and then at the end of the day I evaluate how the day went by how my interactions were with Gregory. I have felt like if I don't prevent Gregory from getting a label of ASD then I have lost my battle and that I have failed him as a mother. I know very sad, but that is how I feel. There have been so many professionals telling me that I can prevent Gregory from being autistic. The doctor in England, the famous Dr. Greenspan, and several others. Dr. Greenspan evaluated him 2 times and told me he was a superstar and that he was on his way to Harvard. So now it is all on my shoulders!! If I am a good enough mother and a good enough therapist then Gregory will be a Harvard grad, right? I know Gregory was born on the autism spectrum. I remember those early days so clearly and I know he was not typical from day one. What I need to do now is except the situation I am in. I need to except Gregory for who he is now. I have not come to that yet. Yes I LOVE my son but I don't think I have excepted him because I have spent the first year and a half of his life trying to change him. I think if I can just except what it is right now then remediating his difficulties will come with time and practice. That is what I hope and pray. Who cares about Harvard, I want Gregory to enjoy life and relationships. That is what it is all about, right?

A spacey week

The past week has been hard. Gregory has seemed very spacey and when we are doing an activity together it just feels like we are going through the motions and then I have to flag him down a lot to get him out of his staring spell. I can see he does this because he is overwhelmed and I have really been trying to make things very simple for him. Simple so he can obviously see what his role is. In the previous weeks I was feeling really confident and felt we could add a little more challenge. I hope this is just a phase. Some of his testing came back that he is very high for some yeast. I am going to talk to the DAN doc about it and see what supplement he needs. Maybe the yeast is contributing to the spaciness.

Finally some help

In December of 2006 when Gregory was 9 months and we were doing floortime with him 24/7 we decided to get an au pair to help us with the girls. Well we finally decided on one and she was to arrive in March. Well she didn't work out because the day she was to leave her country she decided it was too hard for her. Then we had to go through the whole process again. Finally we picked a new girl. She arrived in our home and things just weren't going smoothly and it didn't seem comfortable. We decided to part ways and we have had a new au pair in our home for 4 days and she seems absolutly perfect. She is a very sweet helpful girl from Costa Rica. My daughters adore her and it makes things so much easier for me to be able to slow down and work on RDI with Gregory. I am saying my prayers that she will work out and become part of our family over the next year. Gregory likes her. He has come up with his own little nickname for her. Her name is Maricela. Gregory calls her Cela.

Falling in Love

I always expected when I brought Gregory home from the hospital we would immediatly bond and fall in love with eachother. That is how it went with my other 2 children. Something was definitly different with Gregory from the beginning. When I remember back to the day of his birth and the doctor placing him in my arms I remember him whimpering and I tried to comfort him and examine his tiny body. I remember having a hard time seeing his face because he had it turned away from me. I didn't think much of that then but looking back now I understand why. After a few months of caring for him I felt so lost with him. I couldn't understand why we weren't making this connection. I did everything possible and tried so hard. I loved this little person but I felt nothing in return. Our relationship was not give and take. Of course at the beginning infants can't give much but I felt Gregory wanted to be as far away from me as possible unlike my other 2 children who cried when I laid them down. They loved to cuddle into my arms anytime of the day. It was heartbreaking. I loved this baby boy so much but I didn't feel like I was falling in love with him emotionally like I had dreamed. Over the last couple of months things have started to feel different. Some of the intense anxiety and worry of his future are starting to go away and I feel like he is giving more to our relationship. Today I was at work talking with a friend and she asked how Gregory was doing. I started on about his new intervention and then I started telling her about what an amazing little boy he is and how hard he is working and how blessed and proud I am to be his Mom. She said to me that she can tell because she sees it all over my face. The last time I spoke with her I was feeling so hopeless and I cried and cried. Today I still worry about his future but I spend more of my time enjoying him. I love being with him now. In the past I felt scared to be with him because I new something was wrong but I didn't know how to help him. I have loved my baby boy since the minute I new he was growing inside me, but today I am falling in love with the little person he is becoming. He is so special to me and I thank god that I have him in my life.

Diagnosis

Gregory is now 17 months. Last month we went to our Developmental Pediatrician to get a diagnosis of ASD. I was so sure that we would leave the office with the diagnosis. Our DP last saw Gregory when he was 4 months old and he seemed very concerned at that time. When he saw him at 16 months he seemed pleasantly surprised. Gregory's expressive and receptive language is above age level. He is engaged, he points, he has joint attention, he comes to me for comfort. BUT there are so many things that are not typical. He doesn't babble directly to me. He turns his back to me when he talks, he doesn't put his arms around me and cuddle, he doesn't light up and run to me when we have been seperated for a longer period of time, he won't sit in my lap and look me in the eye (eye contact seems to make him angry). From a distance his eye contact is sometimes ok but usually still fleeting. He initially engages but then usually disengages after a few seconds and goes on to something else unless of course I use my RDI tools. I know he is on the autism spectrum. It is not obvious to strangers or some professionals. My husband and I are torn on whether to persue a diagnosis for Gregory. There are 2 reasons I wanted a diagnosis. First of course would be the financial help. Possibly getting our RDI program paid for would be VERY helpful. The other reason is because I really would like an "MD" to acknowledge what I have been through this past year. I would like someone with that title on my side. Instead of just blowing it off as oh see it was nothing. My family has been through hell this past year. We have been at our emotional and financial lowest points in our lives. And Gregory is only where he is today because of the help he has gotten and not because of just typical development. My husband and I have worked extremely hard on his development. Also for any future families that have to go through what we have gone through. I want people to know that early intervention is so important.
Then on the other hand, maybe we should wait to get a diagnosis. Could it be possible to remediate his issues through RDI and maybe in a few years he would look like a typical kid. I know there are families that are at that point. That through RDI their child fits right in with the crowd. They have overcome their difficulties. Could that happen for my son?

Beginning Our New Intervention

We have begun our new intervention and it feels really good. It actually doesn't really feel like "therapy" anymore and I don't feel like I have to rush to get an x amount of sessions done. Sometimes at the end of the day I think back and wonder if I did "enough" today? But actually when I think then about our day, every interaction I had with Gregory was very meaningful. I use so much nonverbal communication and I go very slow so that he always has a chance to figure out what I am doing and what his role will be. So far it really doesn't feel like "therapy" It just feels normal except that I have to go a lot slower and think a lot more about what I will do next. I emailed Jennifer the other day to ask her if I was getting enough RDI in. She gave me the answer that I new she would. She said she thought we were doing enough RDI and that I needed to make sure my whole family was being taken care of. Of course I don't have time to get pedicures these days but the quality time that I have made to be with my little girls has been great!!! I missed them.

Changing Gears

I went to the YMCA today to pick up my girls from camp and on the way out there was a basket of 'thoughts of the day'. I decided to take one because I can always use some inspirational thoughts. Unfortunatly I misplaced the paper now and can't remember the exact words but it said something about 'Think of the dreams of the future and forget about the history of the past'. I will never forget about the struggles we have been through over the past year but I feel our family is changing gears. Our RDI consultant, Jennifer, and all of the reading I have been doing on RDI has changed some of my ideas about my sons needs and his development. While I am just beginning this journey with RDI as our therapy and still know very little about it, I feel like I have finally found a way of life and a tool to help me help my son along a developmental path that is good for him and my whole family. I am starting to think maybe some of those dreams I had for Gregory before all of the worry set in could still possibly come true. It makes so much sense to me that instead of being in his face 24/7 he needs some room also and his brain needs time to process things. Before we began RDI I had the idea that every second I wasn't engaging him that was a second lost. I had no idea really how to help him. I felt lost. Basically I was just following him around and trying to entertain him, get him to look at me and laugh or smile. I had no idea what to work on except to try and get a back and forth interaction. I needed more structure. That is why RDI has been so helpful to me so far. I know what I need to work on and right now that is making patterns and using less verbal language and more nonverbal . Just making patterns and keeping Gregory with us in the pattern has brought even so much more to our interaction. I have been getting tons of referencing and more emotion sharing also. I have a lot to learn but we are so excited to have Jennifer and RDI.

Crisis Mode

I am sure I felt like most parents feel when they know their child has a complicated disorder or disease. I immediately began researching on the internet. The problem I ran into was that there was no information on infants and ASD. I was devistated and scared to death. What do I do? I could find NO ONE to guide me or help me. I wrote to many support groups and asked many therapist that work with kids on the spectrum but everyone was stunned by my sons age and didn't know how to help. I read the book "The Boy Who Loved Window" which was about a mom who suspected from birth that her son was on the autism spectrum. She began Floortime therapy with him and in the end he was never diagnosed. So I thought to myself, wow, is that possible, could you really prevent ASD with enough therapy? Well I was on a mission. I thought all I needed to do was be in his face 24/7 and make him love being with me and look at my face and he would be ok. I also found a Ph.D in London, England who said working with Infants at risk for ASD was very easy and they could be cured of their symptoms in 3 weeks. I thought WOW cured in 3 weeks...This is what I need. I want someone to make my baby better. So Nick, Gregory, my 2 daughters and I jumped on a plane and headed for London for 3 weeks. Well I think I knew deep down this was not possible but I couldn't leave any stone unturned. I had to try. We used every penny of our savings and put our faith in this doctor and her therapist in England (Infant Mental Health Clinic, or her association IPAN). CRAZY I know but no one else was willing to help me and I felt we were losing time. Well to make a long story short it was a huge waste of money. Our family had a well needed vacation and a nice time together but it was disappointing to return home with Gregory and the same symptoms he had before we left. He still didn't like to make eye contact, he was very stiff, arched away from us, held his arms up away from us when we carried him up on our shoulder, gassy and constipated, rocked back and forth and didn't sleep well at all. He was now 6 months old. I remember crying to my husband in the middle of the night for weeks telling him I lost my baby. I told him I brought him home from the hospital but I have lost him and I can't find him. This is how it felt. Sometimes I felt like I was going crazy. It felt soooo unbelievable. Like a BAD BAD dream. I felt no connection to my son. He didn't want me...What do I do????? Some professionals would blow this off as depression. I had just had a baby so maybe I was depressed. I hoped and prayed this was the case. PLEASE GOD let me be crazy. Let this be about me and not my dear son. Maybe in a fews months this will all disappear. We started Floortime. All day everyday. We saw Dr. Greenspan. We had an OT. We massaged him many times a day. I carried him with me everywhere I went. I slept next to him. I bathed with him. Still there was so much awkwardness between us. When my girls were infants I felt like we were one person. They needed me. They met my gaze. They cried for me. They smiled when they saw me. If my son is ok then why doesn't he do these things? I put my girls on the back burner. They spent many hours a day in another room while I sat playing with Gregory. At night I would cry that my baby girls we being neglected. But how can Gregory get better if I don't spend every waking minute rewiring his growing brain. I put Nick on the back burner as well. I didn't give him the time of day. When I wasn't playing with Gregory I was on the computer looking up Autism. Wondering how we could try to afford another therapy. What else can we do for Gregory? Nick and I began to feel like strangers. We slept in different rooms, we didn't talk to eachother. We began to argue about everything. Finally when Gregory was 14 months a women who is an infant specialist and now our RDI consultant told us she sees what we are worried about and she would recommend RDI. She said that RDI is the best tool that she has at this point to help us with our sons development. Our son still does not have a diagnosis of ASD but I feel very sure he is on the spectrum. At this point I cannot find a diagnostician who looks at development the way RDI does. Yes my son points and yes he has MANY words and yes he has some kind of joint attention but there are so many other things that just aren't the same as a typically developing child. All of those great skills he does have were taught. I worked on them day and night. For goodness sake, if my son was typically developing he probably would be ready for kindergarden by now. I should mention that Gregory was making it hard on me to show people what I saw. He loved novelty so when he saw a strangers face he initially liked to look at it because it was something new. He would make eye contact and smile. So he could fool many. It started to become more obvious when he reached the 14-15 month mark because now you would expect a 15 month old to engage longer then a few seconds. Gregory initially would look at what you showed him but a few seconds later he was looking away babbling to himself or spacing out at the window. When I decided to learn about RDI and read some of the books on it our life began to change. Slowly I feel like I am coming out of the crisis mode.

What Does This Mean?

Gregory and I seemed to be having a hard time bonding the first weeks after his birth. He was colicy and gassy. He just seemed very uncomfortable. I didn't think anything of it at first because my daughters we also fussy babies. Then one day I cuddled up on the sofa with him while I was nursing him and studying his sweet little face. Then I tried to get him to make eye contact and he just kept avoiding me. So when I was done nursing him I put him infront of me and tried again. Again he avoided my gaze and began to spit up. I thought wow that really bothers him. He doesn't want to look at my face. Then I began noticing how he arched away from me and wouldn't cuddle into my chest. I remember the feeling of PANIC when I remember a friend describing her autistic nephew. She told me he didn't make eye contact. So what does this mean for my 6 week old baby boy??? Could this be autism? Of course I took him to his pediatrician and he laughed at me for thinking such a thing. He said autism isn't diagnosed until 3. So I took him to a neurologist and she didn't know what to say because Gregory was so young. Then we went to a developmental pediatrician. At that point Gregory was 4 months old and the DP said he saw what I saw. He told us he didn't know what it meant for his future but we should start therapy. He gave us the name of a Floortime therapist and told us to call our ealy intervention and sent us on our way. What does this mean? How can I go home and sleep at night? How can I function tomorrow and the day after? How can this be happening to my perfect family?????

Happy Days

We are a happy family of four planning for our new addition. Nick and I decided to travel to Greece with our 2 daughters at the beginning of my pregnancy to visit his family. His family in Greece is very religious. His cousin is a Monk and we had several trips to the monastery and many blessings to my growing belly from Yia Yia (grandmother). Things just felt so perfect. A couple of months later we found out we were having a boy. OHHHH what joy. My husband was in his glory!! I am from a family of 4 girls and this was music to my fathers ears. I was thrilled but I would have been just as happy with another girl. Everyone said we would have the "million dollar family" Then that night came, my water broke at midnight and I was on my way to the hospital. I had a pretty easy labor and then at 10am little Gregory was born. The doctor gave him to me and of course I cried many tears of JOY. My beautiful baby boy. My son, I have always dreamed of him. I dreamed of playing baseball with him, playing trucks with him, going to his sporting events, straightening his tie, giving him advice with his girlfriends, dancing with him at his wedding. It felt so wonderful to hold him in my arms. My life felt perfect.