Finished HBOT

Well we finished up our last session of hbot for a little while. We completed only 30 sessions this time around. I felt I saw a lot of gains with it at around 10-15 sessions but don't feel I saw anything since so I decided to take a little break and then maybe try it again. It takes up a lot of our time bc the center is a 45 minute drive and then we are usually there for about 1.5 hours and then we have our drive home. I am looking forward to this week where we can spend our mornings working on RDI. I have been using RDI theory and lots of guided participation but not as much as I would like. I am glad we did HBOT. I definitly think it has helped little G. He amazes me everyday. He won the hearts of many people at the hbot center. He made a good friend with one lady inparticular. Her husband was having treatments and when Gregory got out of the "tubey" he would run out to the waiting area and sit up in the chair and talk with her. When we left yesterday she said to him, "Gregory it was my pleasure to meet you, you are a special little boy, your smile has been such a gift to me and one day we will see eachother again and I will remember you." She was really sweet to him.
We are so thankful for all of the blessings in our life...

Worms

It has been raining for a couple of days. Finally this morning it stopped and we headed outside. When we opened the garage we found tons of little friends at the edge of the garage and all over the driveway. The kids and I decided to save the worms. We broke twigs off of the tree and scooped up the worms and placed them gently in the grass so they could find their way home. This is really not one of my favorite things but it was a great RDI activity. Gregory had a hard time scooping them up so I was the scooper and her was the placer. He placed them in the grass very gently. It was fun. A lot of emotion sharing. They were a bit wiggly so we laughed a lot!

We finished our 20th hbot session on Friday. Yeah, half way! He is doing so great with it! He loves going and he loves the staff there. His personality is coming out more and more. It is amazing. He is such a sweet sensitive little guy. We were watching a movie in the chamber the other day and in the movie there were puppie snatchers. Gregory started crying when the "mean guys" got the puppies. We love HBOT, it has helped him so much!

Facial Gazing

Most infants are known to love faces. They start by studying their mothers face and then are usually drawn to peoples faces. When Gregory was 6 weeks old I noticed that my face was very overwhelming for him to look at, especially while I was holding him. I would lay in on the floor or put him in his swing and stand across the room to try and engage him. It was extremely hard for me to understand why my son could not look at me. Through floortime and RDI I learned that it wasn't me, it wasn't that he didn't love me, but it was because his sensory system and mostly his vision where not working right for him. I can't imagine what it felt like to be in his little body. He was very tactile defensive (hated being touched) and he would flinch at things coming toward him. I think his convergence speed was very slow. Slowly we worked on all of these things. We found an exceptional OT who helped us work on integrating his senses through brushing, swinging, excercises to build his strength... All systems were worked. It has made so much difference for him. The change in this boy is amazing. BUT, I still have been concerned about his ability to gaze at another persons face with ease. It still seemed awkward. He would look but then quickly look away. Maybe it was too overwhelming to sustain the gaze. He got his information (the reason for looking) and left quickly. Well over the past week things have been changing. Day by day I see this ability to sustain the gaze longer. He can shift his gaze more quickly from one thing to another, to another persons face and then back to mine. Seems as though his processing is speeding up. The only thing we are doing right now is HBOT. This is more then just subtle. A lot of people have noticed it. A girl who comes and plays with Gregory on Monday afternoons mentioned it to me today. She works at a school for children with autism. She had said in the past that his facial gazing or eye contact, as some call it was not as great as she would like to see it. Today she said he was referencing her so much and really able to gaze at her face so much easier. His whole sensory system is changing. Since we started our second series of HBOT he is so much more affectionate. He gives big hugs all of the time and actually finally lets his sisters hug him. It seems like his body feels better and he is able to let his sweet little personality shine. I have always refered to him as the grouch. But lately he is so happy. We were at church on Sunday and he smiled at everyone. Usually he would hide his head on my arm but not this week. A man at church said, he is such a smiley happy boy, he responds to everyone with big smiles. He asked me if he is always so happy? I said, yes, well lately he has been. This was not our regular church so he did not know Gregory's history. We are kinda past that now, I think. I don't feel like I have to explain his history anymore. In the past when he would not look at someone or respond to them I felt the need to explain what we were going through. I don't feel the need these days. Gregory can usually hold his own. Sure he has his bad days but that is not our norm anymore. I have to thank God first for guiding us on this journey. For leading us to all of the right people that were able to give me the information I needed to help my son. Gregory is headed in the right direction. His development continues at age level and I pray that he will stay on this path and he will continue to flash that amazing smile at everyone he sees!
My favorite conversation we had today:

Gregory~ Mommy can you open this for me (a little bag of candy corn)

Me~ Sure sweetie. Then I gave it to him

Gregory~ Thank you Mommy.

Gregory~ I love you so much.

Me~I love you too baby boy.

Gregory~ Mommy do you have work today?

Me~ Yes, I have to leave soon.

Gregory~ Will you come right back after you see your patients?

Me~ of course!

I Love this boy!!!!!!!!!

Well here we are. Gregory and I getting into our "tubey"(that is what he calls it). We are seeing it again. More good changes in him. The last time we did hbot we noticed changes in his overall attitude. He seemed happier and more engaged. His sensory system seemed to be working for him better. When I talked to our DAN! doc he mentioned trying hbot again to try and resolve his sensory issues. We are thinking about doing detox (chelation) too, but will take it one step at a time. Today we were at church and the minister invited us to the alter for prayer. A few people went up and then Gregory said to me, "Mommy can we go pray?" I said, absolutely baby boy. We went and prayed together. We have so many things and people to pray for. I follow a lot of other blogs with precious children who are struggling every day. Their parents by their sides day in and day out. Doing everything they can for their children. I am on my knees everyday praying for these little ones.

Gregorys Halloween parade at school

My little firefighter. Gregory had his heart set on being a firefighter for halloween. I searched high and low for this costume. They were all out in the stores so luckily we had enough time to order this one from online. He was so funny. He was trying so hard to hold back his smile.

HBOT

Today we completed our first dive of our second series of 40 dives. I guess it would be considered dive #41. We went to a new center. I really liked the chamber (bigger then the last ones we went in) and the staff was super nice. The last time we did hbot we were in the chamber for a total of 60 minutes even if it took us 15 minutes to get to pressure. This time we are in the chamber the full 60 minutes at our prescribed pressure. This is great! So today it took us 22 minutes to get to pressure and then we stayed there for 60 minutes and then decompressed. Gregory had some issues today with ear pressure. He is getting over a cold and still has some congestion so his ears were really bothering him. We had to go really slow to get to our pressure of 1.5. I am going to give him a decongestant tomorrow and see if that helps. He was great otherwise and the staff thought he was a little flirt. He was being really cute. I have to get some pictures up of us in the chamber.

It is scheduled

Ok, so I thought and worried about whether or not to go deeper into debt. To spend more money that I don't have. We decided to do it. The hbot center is giving us a huge discount and I just feel like I have to take the chance. I feel like I have to take the chance that the oxygen is going to help Gregory get further along. I still see him struggling. I don't deny his progress but I can't help but think there is more I can do for him. We talked to Dr. Demio, our DAN doc and he thinks we should do more to help with inflammation. Gregory still struggles with constipation. I think it is a big sensory issue for him. It hurts. He cries. I want him to feel good. His body still doesn't feel good and that limits his engagement with us at times. We have also run out of mb12 shots so they are coming and I can see the difference when he hasn't had them for a few days.

I have also started the girls on the gfcf diet and supplements. I have seen good changes for Olymbia. I haven't noticed anything for Sophia yet. They tell everyone they are eating organic :)

I hope someday I can sit back and not worry. Not worry about how my kids are developing, not worry if I am interacting with them enough, and not worry if I am doing enough for them. I just want to enjoy them, period. I feel like I have this pit in my stomach ALL OF THE TIME. I wake up and it is there and I go to bed and it is there. I pray for peace and reassurance that God will take care of us and guide us...

More HBOT?

I have been thinking about doing another 40 sessions of Hyperbaric Oxygen Therapy. If it didn't cost us anything I would do it in a heartbeat but unfortunately that is not the case. When all of your financial resources are dry it seems like an easy decision to make but for me it is a hard one. Our first 40 went well and I saw improvements in Gregorys development that I was very happy with. So my thoughts are, what could another 40 do for him? Unfortunately we cannot see into the future so it is a gamble. But what if it is that last little piece we are looking for? Gregory is doing well, I can't deny it. But when your child has come so far you always want more for them. I will not settle. I want the works for him. I want him to have many friends, go to college, get married, have children. The same dreams I had for him before that dark heart sinking day I realized my baby boy did not want to look into my eyes. There are so many things out there to try. What will benefit him the most? Is it more hbot, detoxification, HANDLE, vision therapy? And the list goes on... I have made RDI our life, so that will be with us always. It is my way of interacting with Gregory, with my girls, and actually I find myself interacting in this way with any child I come into contact with.
I am so thankful for the progress Gregory has made, but am I crazy for wanting to do more? I got a call from an hbot center today. He was offering us a discounted rate if we could come during certain times. Is this a sign that I need to try it again? Should I get that temping hygiene job so I can afford this for a couple of months? It never ends... The questions, the worries if I am doing enough.

A new church experience

Today I decided to go to church with my mom. Our church is about 45 minutes away I just wasn't feeling up for the drive this morning so I thought I would go to her church. The kids have been there and really liked their Sunday school class. After all of the stress of getting the kids to where they needed to be I settled into my seat. I looked around and found myself very surprised. The women sitting next to me had on jeans and was drinking a cup of coffee. Now I must say that we go to a Greek Orthodox church. Converting to Orthodox was hard for me because they do many things that I had never experienced growing up in a Methodist Church. Things are pretty strict. I don't think I have ever even seen a women in pants at our church. The service is the same every Sunday.

So I looked around some more and then focused my attention to the guitar player and singer behind the alter. Wow...I said to my mom, I'll have to bring Nick here some time, he'll fall off his chair. About half way through the service I found myself excited and engaged. The pastor was great. He was excited and motivating. He asked if a new person came to this church would they feel God's presence? I was a new person today, and I did feel his presence. He asked us to say this short prayer everyday. "Use my heart and my hands for Your glory"

Even though this journey has been extremely hard for me. I have always felt that God had a purpose for it. My heart and hands are ready. I pray everyday for God to show me the way.

"Daddy is not doing RDI with me"

I had to laugh at this one. Tonight Gregory was with Nick so I decided to go upstairs and read some of my book. A few minutes later I heard Gregory calling for me. This is how it went:
Gregory: Mommy, where are you?

Me: I am upstairs buddy.

Gregory: Comes upstairs and climbs in my bed. What are you doing Mommy?

Me: I am reading.

Gregory: I am going to read with you because Daddy is not doing RDI with me.

Me: What is RDI

Gregory: When we do stuff together, like playing, cooking, and cleaning.

Me: Hugs. Your so funny.

When Nick stopped doing RDI with us I was very upset. Sometimes when I would leave them alone I would say, hey Nick why don't you work on RDI together. I guess the little guy picks up on everything :)

Cloud 9!!!!!!!!

Well today was Nicks morning to get Gregory and Sophia to school. I work 1 day a week and Tuesday is the day, so Nick gets Sophia and Gregory ready and off to school. I had a little break between patients today when it was let out time and since I was missing the kids I ran over to the school which is about 2 minutes from the office. Nick had already picked Gregory up from his class and I ran into his teachers after his class. They were very happy and were very excited to tell me how wonderful he is doing. Mrs. O said he was very happy and he participated in everything. He was running around out at the playground with another little boy. He didn't even cry when Nick dropped him off. I feel so relieved today! I debated whether or not to put him in this class but it really seems to be working out. Gregory is happy and I think he feels comfortable in this school and with his wonderful teachers. I feel very blessed to have these very caring people in his life. It makes me feel so happy to see him thriving in this social setting. I feel like I am on cloud nine tonight.

Gregory and Sophia's first day of school

Of course Gregory is not a camera guy so this is the best I could do for the 2 of them. Nick got an awesome picture of Gregory in the front of the school but it is on his phone and I don't know how to get those onto the computer yet. So we got through the first week (sigh) :) The first day was rough. He cried for 10 minutes and then I told the director to make sure the teachers do not try and cuddle him or hang on him. Well that did the trick. As soon as they just left him go he stopped crying and was happy the rest of the class. Thursday was a little better he only cried 2 minutes. The teachers said he did really well. He participated in everything and was happy and very talkative. I wish so badly I could be a little bug on the wall! He has been doing very well. He is so engaged. His referencing has been great and he is initiating so much on his own now. I remember the day I wished so badly my little guy would come and ask me to play ring around the rosy or a game like that. Now he does it all of the time. Today he asked if we could hold hands while we jumped on the trampoline. He asks me to race him. It is so cute of course I always let him win ;) The other day we were driving home from our OT appointment and he said Mommy, I love you. Your the best Mommy! OMG, I almost lost it!!!!! Gregorys OT is really great. She gave us a lot to think about for the next few months. She worked on his pencil grasp and by the end of the appt he was holding the crayon pretty good. We know we have to work on those visual muscles. It is pretty obvious his convergence speed is slow. So we will continue to work on his sensory system and would really like to add HANDLE soon if we can get to a seminar. So tomorrow is school again (every tuesday and thursday). So we will pray for another good day!

Olymbia's first day of school

Bias first day of school. She is a big first grader. It is hard to believe. Gregory starts school on Tuesday. I am very nervous but I feel good about his school and his teachers. Everyone is very nice and willing to work with me on helping Gregory grow and make progress through RDI.

I was so upset today. I just got my camera back from repairs and I left it in the car overnight by accident. Well the one night I leave something in the car there must have been some mean people in the neighborhood because today my camera was gone :((( I can't believe it. I don't understand how someone could take someone elses stuff but I guess it happens all of the time and this time I was the victim. Not fare! So now I am without my Flip and my regular camera.

Baby Gregory

This is a picture of Gregory when he was 4 months old with Nick. It is sometimes hard to look at baby pictures of him. It brings back memories of a very disengaged baby. Oh how we struggled with him. Not knowing what was going on in that little brain. Wondering if he would ever talk to us, want to look at us, show us things, feel comfort from our touch, and the list goes on. He does all of those things now. I feel blessed beyond belief. The things he understands, the way he connects now with Nick, his sisters, and I is all so amazing to me. Yesterday I was at work and his Theo Pete took him out. They went to the park, the grocery store, and the fire station. Gregory loves fire trucks. He got to sit in one and talk to the firemen. On the way home they stopped at the office. I took him back into my treatment room and showed him all of the cool stuff. He went for a ride in the chair. He said why can't I work with you? I said well you'll have to go to dental school. He said no I am going to be a firefighter! He has a lot of ideas of what he will be when he grows up. I hope he finds the one that he will love doing.

I don't know if there are any other families out there with a situation like ours. I know when the doctor first told us at 4 months that it could be autism I found the book The Boy Who Loved Windows. I read this book probably 10 times. It was my bible. It described the journey of a family in a very similar situation as ours. In the end the boy was never given a diagnosis of autism. After I read this I told myself that this would be my story in a few years, not really knowing if it could be. I did whatever it took to engage my son. After months of struggling with floortime I found RDI. Floortime was ok but I never really knew what I was suppose to do. There was no structure. RDI changed my life. It changed my parenting for all of my kids. Of course we will never know what the outcome would have been if we did not seek early intervention for Gregory but my gut tells me it would not have taken us to the place we are today. Gregory did not reference us. Facial gazing in a way was painful for him. If we did not slow down for him and make nonverbal communication priority then I am sure he would be struggling. Struggling to understand us. Struggling to understand our intentions. Today he understands a lot. I am so thankful. Thankful for Gregory. Thankful for RDI. Thankful for this journey.

The Flip

We have been having some problems with our Flip video camera. I went ahead and tried to update the new download and have caused even more problems. So I am waiting to hear back from technical support on what to do to fix it. I want to put all of our video on this blog so I have another place besides the os to view it. I thought maybe Gregorys teachers can see it and I could help them understand what I am doing.

Gregory has had a great week. We had a few tantrums but with a lot of patience and regulation on my part he comes around. There were 2 really cute things he did yesterday.
~When Nick came home from work he ran to the door and said "Daddy are you home with me now?!!!" Nick said yes! Then Gregory clapped his hands and said "Yeahhhhh Daddy's home now with me!!"

~We were at my parents for dinner and Gregory was the last one at the table finishing his dinner. He got up and started walking around the house saying "Where is that Poppop...Where is that Poppop." When he realized he probably went outside he went to the door and said "That Poppop is outside". I think I have mentioned before that Gregory LOVES my Dad. My dad has a huge garden and has a big tractor that Gregory is just fascinated with so my dad and Gregory spend a lot of time on the tractor together. Gregory drives it like he was born too.

Here are some videos of Gregory and I working on RDI. Sorry they can be a bit shaky.

RDIos Webinar

I attended my first live webinar yesterday. It was really neat and because their was only one other parent on I got a lot of one on one. The title was Prekindergarten and kindergarten. Since Gregory is going to preschool in a couple of weeks I thought maybe I could get some ideas for the teacher. Some ideas on how she can implement RDI into the class.
Some ideas she gave me:

~Use a lot of indirect prompts especially nonverbals to help him monitor his surroundings and to problem solve.

~incorporate as much sensory stuff for him as possible. Activities that allow him to be an active participant in PUSHING, PULLING, LIFTING, CARRYING. Using as much nonverbals as possible to direct him.

~She also said to ask the teachers to pause a lot to give time for Gregory to process information.

She also gave me some ideas for sensory stuff she could do in the class.

*Use a large theraband and all of the kids hold it and row back and forth while singing a song. This is good for sensory and also good for coordinating with others.

*She suggested adding weight to doll carriages or wagons and have Gregory push and deliver something to another classroom or child.

*A fun thing she did was to pretend the classroom was to small at one point and have all of the children find a spot on the wall and push the wall. Then they would stop and talk about if the class got bigger.

*He could help with anything that needed poured or any giver putter stuff.

I mentioned Gregory has a visual sensitivity and she suggested working with bubbles. He could follow the bubbles and maybe try to pop them. She recommended suspending balloons from the ceiling and have him hit at those because they move much slower then a ball.

So I got a lot of good ideas. I am getting really nervous. I hope so badly that this works out for him and has a positive impact on his development. If it seems to be going in the wrong direction we will definitely think about either having someone go with him or just keeping him home :) I don't want to overwhelm him. He is funny. Some days I say oh he is so ready for it and other days when his body is "out of sync" I say oh no I don't think he is ready. So we will see how it goes...

A trip to Dutch Wonderland

My brother in law wanted to take the kids to Dutch Wonderland ( an amusement park). I was a little worried about him with all 3 kids himself so thankfully my sister volunteered to go along. They said it was a good time. Unfortunately I had to work. I saw lots of pictures and it looked like all of the kids had a blast.

I am working on getting a list of things together for Gregory's preschool teacher. She wants to implement RDI for Gregory in the class. We have emailed and she sounds so sweet and willing to help us. Gregory and I worked on his objective a little this morning. We were cutting celery and putting peanut butter on it. He did great. Then we tried making necklaces with pasta. This seemed to be hard for him. We will try it again another day.

A blood draw

On Friday we headed to Childrens Hospital to have blood drawn for a few tests. We needed to get the genetics testing done and then I asked our DAN! to test his thyroid again (it was borderline low previously) and food sensitivities. I would like to get back to the gfcf diet but it is so hard and I figure if it definitely is needed bc he shows an allergy then I will definitely be motivated to implement the diet again. So anyway on our way there he says Mommy why are you going to the doctors, because your knee hurts? (I recently had a knee injury) I said No buddy, you are going. He said Why? I said bc you have to have a little test. We get there and immediately he remembers this place. He says I don't like this place. We go inside and there are toys and stuff so that kept him busy. Then the lady called his name and he was like a little monkey hanging on my neck. He has never hugged me so tight before. We go back to the room and he starts crying. I felt horrible. Long story short, we got the blood and he got a cool green wrap around his arm. He thought it was neat. I took him to the playground after, which made him very happy. He was playing and then came over to me and said, Mommy I am going to show my "test" to the kids. I said ok. He walked over to a boy who was about 8 and said look I had a test today. The kid just gave him a weird look and walked away. I was so disappointed and so was Gregory. He came back with a sad look. I said oh he is a big boy and he probably doesn't like tests. But he loved showing off his cool bandage to the family. We showed Mimi, Poppop, Aunt Katie, Theo Pete and Theo John and of course his big sisters. He seemed proud of himself, the ladies told him he was so brave and kept saying how cute he was. On the way home I kept telling him they thought he was so cute and he would get that bashful smile.

A Good Day

Gregory was going through one of his "down" periods starting about a week ago. When he has these I get really stressed out and really worried. He was very irritable, spacey, oppositional, and just down right grouchy! I tell myself every time he gets like this not to worry and not to take it personal but I always do! I ask God to give me patience and strength to get through it with Gregory and bring us happy days where Gregory is thriving. I thank God everyday for the progress Gregory has made, for the wonderful people He has brought into our lives and for the absolute joy this child brings to my life. His smile and sweet laugh melt my heart. He is turning into such a little character, a little Nick I guess you could say. Nick was the class clown, voted most popular guy in high school. He made me laugh and he made everyone around him laugh. That is what I always loved about him. Every now and then I see glimpses of Nicks good funny happy nature coming through Gregory. When he is relaxed and his body feels good. When his true colors are coming through he reminds me so very much of Nick. I always wanted a son who had my husbands personality. Someone who was funny, outgoing, optimistic, loving and hard working. It feels good to see my husband smile and say "Thats my boy" at least once a day. My father even has a comment that I love hearing "He's somethin else!"

Today we did a lot of hanging out together. I thought about our objective a little throughout the day but the day was just flowing. Gregory was engaged and happy all day. He even had a big poop on the potty which is always a happy occasion. I think I can say he is fully potty trained. He tells us when he needs to go and rarely has accidents. He even had to pee outside in the grass today because we were out and about with no bathroom nearby. He laughed the whole time. It was a father son moment because I had Nick help him with that. We finally got our trampoline so that should keep the kids busy until school starts.

Working on our RDI objective

This is Gregory and I working on our objective. He is suppose to compare his actions to mine to make sure that that his actions match mine. This is a work in progress. He is catching on that he needs to constantly reference me. We think he has trouble with his visual system so this is probably a little hard for him.

Potty training

We decided to start potty training for Gregory. We started last Wednesday. He is doing great! He has had a few accidents. It is usually when he is doing something and he forgets so he goes a little in his undies and then says I have to go potty! I am happy it is working. He was 2 in March so he is actually on schedule. The girls were potty trained at 2 and a half. With him being a boy and the worries about his development I wasn't sure when it would happen. He has even went #2 on the potty twice. He has a constipation issue and I think it may be sensory and low tone related. I think sitting on the potty to go is helping him though. We are also on a trial of an antibiotic and antifungal to see what would happen to his stools. They are so much better since the antibiotic. Formed and not as awfully stinky!

Otherwise he is doing pretty good. He gets a little oppositional at times but I have been able to stay really calm and work him through it. Our objective we are working on has been improving. When we first started it I thought oh my this is a hard one. But it seems to be coming along pretty nicely. He is starting to keep referencing me on a continuous basis to make sure his actions match mine. Of course there is still some scaffolding on my part, but we are getting there.

Feeling lost today

Gregory is going through a rough period right now. He seems very irritable and his sensory system seems out of whack. When he goes through these times which come and go I always get so down and my anxiety builds. I start worrying for his future. This is such a hard thing for me. I feel like I have not found a place for us. You know,we have been around the world to help this little guy and we have seen expert after expert and I can't tell you how many times I have been told that my son is not autistic. Deep down I know this was how he was born but I still have this dream that it will not be his label someday. It drives me crazy that outsiders that see my son for very short periods of time want to tell me that my son is perfectly typical. I just wish they could be me for a day and feel the deep love that I have for this child and then see how it feels to have to work so hard to be with him and engage with him at times. I watch as other parents engage with their 2 year olds and it is so amazing how easy and effortless it looks. It has gotten amazingly easier but I still struggle at times and worry a lot. Today I could do nothing right for this child. He whined about everything. He is tired, out of sync! I am trying my best to stay strong and just BE with him, not thinking about anything else but the moment, but inside I am drowning in my tears. I just want him to feel good. To be happy. To be like other kids. It hurts so bad sometimes that I feel numb. I want to do all I can for this child. I want to give him the world. We don't have the money to keep up. Gregory has no diagnosis so we get no support. We have spent every penny in our savings to help this boy. We flew to England for a month, we have seen some of the top doctors around (who do not take insurance and charge an arm and a leg), we buy tons of supplements, we've done hyperbaric oxygen therapy, we do the best developmental therapy we know of. Nothing we do is covered by our insurance. What next? Do we sell our house and move in with parents? I would live in a shack to be able to help my baby but what is the right thing to do? I feel like I am in the middle of the ocean struggling to keep my head above water. Tonight I feel so sad. I don't feel like I am being "A good enough mother" today. I don't have the answers for myself or my son today. It feels awful.

Sensory

The more I get to know Gregory and study his development the more I see that the subtlety of his sensory issues really makes a difference for him. When we first started this journey with him we went to see the well known Dr. Greenspan and I read his books and I believe his thoughts on autism are that it is sensory related meaning that the childs body doesn't feel good. The senses aren't integrating properly. I read these things and I saw Gregorys issues with tactile defensiveness and a visual sensitivity but I still just thought that Gregory just didn't like people. Well 2 years later I see so much more clearly that in fact that is not the case. Gregory loves people but I think relating to them with how his body felt made it very difficult. These 2 systems (vision and tactile) he still struggles with but they are getting better. Everyday I see him inching out of this shell. It is really amazing watching him change. I want to get more aggressive with activities to help these two sensory systems. I think once we get them working smoothly he will really let his cute little self shine!
I think what I'll do is post a cute saying of the day from Mr. Gregory. He says so many things these days that amaze me and make me smile.
I have to tell you the cute one he said on Sunday. My mom was taking the kids to church and we were deciding what shirt he should wear. Gregory said he wanted to wear his crocodile shirt. So we put it on. He then said, " I am going to tell all of the ladies at church to STAY BACK because the crocodile might bite you. He won't bite me though because he is my friend" Isn't that so funny! Being a tactile defensive kid maybe he was thinking about that, maybe that was his excuse for all the ladies to "not touch" :)
Last night we were getting ready to go upstairs for bed and he picked up a stapler my hubby left on the kitchen table. I said no no to him. He said "Is this dangerous, mommy?" I said yes. He said "Can mommy and daddy use it?" I said yes. Gregory said "Can you teach me?" :)

Looking Back

After the kids are tucked into their beds I usually spend my nights reading other parents of special needs kids blog posts. It is an addiction of mine now. I just can't stay away. Then I decided to go back and read my old posts. It made me really sad. I felt sad that I was so scared for my little man. You know he still has issues we are working through but I Love Him and guess what HE LOVES ME!!! AND he loves his Daddy and his sisters and his Mimi and his PopPop and his YiaYia and his Papou! It probably sounds kinda crazy to write it out like that but back in those early days I wasn't sure if it was gonna happen. Well it is true...he even said it himself. My husband likes to joke with him and ask him who he loves more Mommy or Daddy:) Well his new answer is I Love you both:) What a sweetie! This kid is so sensitive. Well, literally he is sensitive because he is tactile defensive but he is also sensitive in another way. He seems to be sensitive to other peoples feelings. A lot of things take him to a different place. A place where he has a harder time just being and integrating all that is going on around him. But when he can, he amazes me. There are so many times I look at him and I feel so bad because he just looks like he is trying to figure out his body. I can tell things don't feel right to him. But, I'll tell ya when he feels good he can come up with some pretty amazing stuff. It has been a long road with Gregory but I think I have him figured out pretty good these days. I rarely get down and depressed about the situation anymore and the reason is because I have so many tools to help him. RDI and our wonderful consultant, Jennifer being the 1st. My next move is to really get down to this sensory system of his. It is so obvious that it needs a lot of work. I am hoping to try a new approach soon so I'll let you know about that.

When Gregory was an infant I couldn't imagine his future as a bright one but today I imagine so many things for him. Things may not always be perfectly smooth for him and I am sure there will be many times he will struggle but I am starting to feel more confident that I can be a good guide for him, always...That is what I work and pray for. I want to be a good guide for all of my children. It takes practice and LOTS AND LOTS of patience. I know I don't always do it right but I will keep trying and praying and hopefully someday I can be proud of the job I did at the most difficult job (in my opinion) in the world...being a mother. Don't get me wrong I LOVE this opportunity that I have been given and these sweet babies but it is difficult, especially with special needs in the picture, but I would not change anything for the world.

Tonight we were getting ready for bed and Nick came in the door. Gregory said, "Is that you Daddy" while smiling from ear to ear. He peaked around the corner and started squealing with so much excitement. That little boy adores his dad!!!:)

A new objective

Yesterday was a pretty good day. Nick and Gregory headed out early for a haircut which Gregory loves to go to. The barber has been cutting Nick's hair since he was a little boy. The first couple of times Gregory cried of course but now he loves it. He jumps up in the chair like a little pro. Of course Timmy hands him a pop for each hand. The girls and I went grocery shopping. Turned out well, no arguing between them and they helped me a lot too. Gregory took a nap in the afternoon and Nick took the girls to the pool. Gregory and I went after he woke up. My kids LOVE the water!
As far as RDI I think we are going to move on to a new objective. I was looking at one that says the child checks the guide often to make sure their actions match the guides. I just have to talk with my consultant to see exactly how to go about working on it.

Some older photos of the Girls

This is Olymbia at age 1.
Olymbia and Sophia
Sweet little Sophie
My sister Lauren and Olymbia. I was going through some old photos and since I am always talking about Gregory I thought I would post some pictures that I love of my girls.

This is a photo of the girls before Mr. G arrived.

Back to normal

I always go into worry mode when Gregory has a bad day. Monday seemed like a bad day for him. He seemed spacey, tired, and clingy. He was also backed up with his poop. So Monday night I gave him 2 capsules of oxypowder and viola yesterday morning we had a diaper full of you know what with overflow all over the steps :) Sorry, I know thats gross but in our house poop talk is just normal anymore. Well needless to say Gregory was a different kid all day. He was happy, energetic and easy to get along with. Clara (the very sweet girl that comes and floortimes with him one day a week) was here and when I came home from work she was saying how well he did. That made my night. We are still working on our same objective about Gregory getting info and then checking back to see if he really understood me correctly. He is really doing well with this.

Yesterday my sister D brought the girls into the office so I could clean their teeth. It was fun. They both did great and they had great checkups! No cavities. I enjoy being with my baby girls so much. I hope they will always feel close and safe with me as I do with my mom. Whenever I feel scared or upset I will think back to my childhood when my mom would be there for my sisters and I and take the pain away. I have asked her to do that for me many times through this journey with Gregory. Early on when I was so anxious about his future and I didn't know what was going to happen with him I cried to my mom to make things better. Of course she did all that she could and that was a huge help to me. I feel so lucky to have my mom AND my 3 beautiful sisters. What a great team we are. I feel like we are always there for eachother and I don't know what I would do without them:)

Monday, Back to work

I only work Monday and Tuesday afternoons but it is still hard to leave the kids for those hours, although it is a nice break out into the world. Yesterday was an off morning. Gregory was not himself. Pretty fussy and not wanting to share anything with his sisters. He wanted them to play but then did not want to share with them. I decided to get them out of the house so we went to the library. At the library Gregory was clingy and seemed very tired. He gets like this often where he seems so tired in the late morning. I can't understand it. I am anxious to go get his testing done for his thyroid again. The last one we had was borderline low and since I have thyroid disease I want to make sure we check his often.
I got home late from work, about 7, so we just went for a walk, read some books and then went to bed. Olymbia read us one of her books. She is reading the level 1 books and doing pretty well with it. It is so amazing how fast she grew up. I can't believe my baby is going into first grade already. She wasn't very good today when my mom was here with her. She ran out of the house across the street because she saw some kids she wanted to play with. My mom had to run across the street to get her and drag he home kicking and crying. She seems to have this impulse control problem. We talked about this a lot tonight. She understands it is wrong but she wants to play so bad that she just runs.
Hopefully today is a better day for everyone.

Let's try again

Well once again it has been a while since I posted here. Really I just wish I would find the time each night to sit down for 5 minutes to reflect on the day. I think it would really help me in the future to be able to look back and see how far we have come. These days Gregory is doing really well. Of course there are still things I worry about but overall he makes me smile and feel extremely proud so many times during the day. For example, Saturday I was trying to get him to take his vitamins (which he usually swallows with a swig of juice-pretty impressive for a 2 year old). Well for some reason he started resisting and he would not take them. I started getting upset and very impatient and so I decided to leave the room for a few minutes and go sit down on the sofa for a time out. He came to me crying and asked me to hold him. Then I started crying because I felt upset that I lost my patience with him (its a 2 year olds job to say NO, right?) So he looked at me and then just hugged me tighter. Later that night he took his vitamins and after he did he said, "See Mommy I can do it" Then to top it all off the next day he said to me, "Mommy remember yesterday you were mad at me because I wouldn't take my vitamins. HOW CUTE IS THAT!

We are still plugging along with RDI and biomed. RDI is so wonderful. We are working on an objective where Gregory has to check back with me to make sure he got the right info from me the first time. He is doing beautifully with this objective.

As far as biomed we are doing a slew of vitamins and supplements. Possibly going to pursue some more hbot. I liked the first 40 sessions. Nothing that really popped out as far as progress but just an overall better attitude and definitely more affectionate. Maybe it helped his sensory issues. I wish my bank account was loaded because I would do so much more but unfortunately it is not so we have to do things very slow.

The girls are doing well. Olymbia had a good day yesterday. Some days she has a really hard time regulating herself. She definitely is sensory seeking. But yesterday she seemed to regulate herself nicely. She went to church with my mom and sister and then she came home and played so nicely with Sophia for hours. They played house. It was so sweet. As we got ready for dinner I heard Sophia say to Olymbia, lets sit next to eachother at dinner. I love when they get along so well. Before bed Olymbia, Sophia and I read books. Olymbia (BIA) read us a book. She is really starting to click with reading. It is great!

Sara

Finding Time

The last few months have had me doing a lot of thinking about what my purpose in life is. There are so many things I want to accomplish. This journey we are on with figuring out happiness and peace for our family. I need to spend more time with God, I know. I really need to find a direction to move in. We are doing ok as a family but I want more for us, more for my kids, and yes, more for me. Gregory has brought so much to our lives. He is a wonderful little boy whose smile makes my heart melt. Yet he struggles. I see how his body does not feel just right for him. What I mean is that his sensory issues prevent him from being just him. He has so much to offer this world and I want to do everything I can to help bring that out. So this determination to help my son has brought to me a feeling of wanting to help other parents learn to help there children in the same way. Yet I am not quite there yet. I have the motivation but don't quite have the knowledge and expertise. So now I am searching for that. I want to study this fascinating part of the body, the mind. I want to understand how the mind develops and how things may go wrong in development. I want to do this so I can work with children with autism. My son would be in a world of his own right now if we did not find these wonderful therapies to help him. He still has difficulties but his last ADOS test he showed no signs of autism. I don't know if he will always be free from this diagnosis but what I do know is that we have a wonderful relationship right now. He is securely attached to me. He wants to be with me. It feels great! I am reading the book "The Cradle of Thought" It is a fascinating book about how the mind develops. I will post more on it when I finish.

SO now I have all of these things in my mind I want to do. BUT...where is the time? I am going to sort through things and hopefully I will find the path that will lead this Lymberis family to a happy ending.

Catching Up

It has been a very long time since I have posted here but I actually would like to get back into it. So much has happened. In March Gregory turned 2!!!! I can't believe it!!! It has been the longest 2 years of my life. The good news is, it has actually turned out to be a wonderful life changing 2 years! When my little guy was 4 months old all I could do was to cry when I thought of his future, now when I think of his future I usually smile. He has made unbelievable progress in his development. We went from an infant that hated to look at me, arched away from me, couldn't stand my skin touching his to a happy, bright, affectionate, people seeking toddler. Sometimes I think about it and I cannot believe my eyes. I feel so blessed to have this amazing child in my life. He has changed me forever. I will never again take one smile or touch from any of my children for granted. We went through many different things over the last months. I will catch up on those in later posts.