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.