I am still here!

Life has been hectic. I do miss blogging since it was a good way to vent. Less than 6 weeks to go of this ABA program for my son then I will be able to get back to a normal life. I do love the program and the people involved and I do believe it has changed my son for the better. I only hope it will continue to help him. I do miss seeing my baby girl too through this time. She is getting less of mom time because of this and I do feel guilty. On the plus side, this program has brought my son and I closer and that is a wonderful thing. He wants more hugs and kisses and randomly wants me to pick him up and just hold him. I feel like I am unlocking my intelligent, funny little boy, little by little. One day I know I will hear his voice and I will understand what he is truly thinking and what he is giggling about. Until then, I go keep going on day by day and I enjoy the little things that I see everyday.

Best friend

On Friday we had to put our dog Bob down.  He was the first dog Eric and I adopted when we lived in Alabama.  It was Eric's first pet and my first indoor dog.  It was one of the hardest and easiest things we had to do.  We loved him so much.  He had just turned 12 human years old in December.  When we lived in Alabama, I started looking for a dog since I was still having trouble finding a job since we moved there.  I thought, maybe then would be a good time to get a dog since we both wanted one andI had the time to train it. 

I found him on Petfinder.com and fell in love with him instantly.  His original name was Smiley, he was 5 months old, and he was at a foster family for the Humane Society.  He had been adopted when he was very young but his first owners did not want to deal with him and so they left him by himself in a crate at all times.  I remember the first time I went to meet him and he met me at the gate.  He was so fluffy and friendly.  I knew I could not leave without him.  So began our days of owning a puppy.  In the first couple of weeks Eric and I were stressed and unsure about him.  He was a puppy with a lot of bad habits.  After a while though he got used to us and we found out what a playful, smart, and happy dog he was.  He was being crate trained by his foster mom so we continued it and he actually liked his crate.  We left it out and he would always climb in it and sleep in it.  It was his safe place.  He could even open the door if the door was unlocked. 

I remember when I finally took a job as a hospital clerk after deciding to go to nursing school and having to leave him alone for the first time.  We gated him in our kitchen just in case he had any accidents.  We left him with plenty of toys and water.  When we came home we found him outside of the kitchen and his dog bed was torn to shreds.  We could not figure out how he did it.  We decided to watch him so we placed him back in the gated kitchen and watch him climb the gate to the top and jump over.  The next day we used a gate on top of some boxes and bookcases.  He still climbed those.  He was our Houdini.  We found out that he had extreme separation anxiety and he would freak out when ever he was alone.  Once we got our second dog Bella he was fine.

When I was 8 months pregnant with our son Riley, we noticed Bob was not seeing things very well.  He usually caught his treats in the air, but we saw that he was not seeing them at all.  We rushed him to the vet only to find that he had suddenly gone blind.  We even took him to a pet opthamalogist only to find it was irreversible due to an autoimmune disorder that sometimes occurs in dogs.  Bob was depressed for many months.  Of course he was.  His favorite things to do was to look out the window all day and to ride in the car to watch everything go by.  Soon, he figured out how to maneuver our house and he was a happy dog again.  He just needed extra help.  Of course at that time we also brought in a new baby and being newly blind he was very confused.  For a while we thought we may have to give him away since he would growl everytime the baby cried and he would sit by him staring at him in an unfriendly way.  Once he got used to the new sounds and blindness, he was ok.  He never, ever tried to hurt either of our kids even though Riley has pulled on his tail a few times or accidentally tripped over him.  He was a good dog.

Everywhere we took Bob, he was well known.  All the groomers, vets, and kennels he has ever been in, he was well known.  He was the super mutt that had the face of a puppy.  Just a week ago when I was at the vet with Bob in my lap, a woman in the waiting room said "What a cute puppy".  I turned to her and said, "Acutally, he is 12 years old".  She loved him even more.  We were always stopped on the street when we took him for walks and people would always ask us what kind of dog he was.  We never knew his breed so we always said mutt or just Bob. 

After we had the kids the dogs got less time.  I feel bad about that now but it is how things go.  When you have kids your dog babies come second.  We still loved them always.

A few weeks ago, Bob stopped eating.  Lily was only 3 months old and Bob has always been picky about his food so we thought nothing of it.  He would eat one bite and then nothing.  Then a few days later he started vomiting.  We figured he just had a stomach issue so we took him to the vet and found out he had severe kidney failure.  They still do not know why.  The vet told Eric that if he was human he would be rushed to the hospital for dialysis and a kidney transplant.  That is how bad he was.  We tried to treat him with IV fluids.  They actually seemed to help him and he perked up.  We also put him on Pepcid and he was eating again and acting like himself.  Of course last week, things changed.  Bob stopped eating completely last Monday.  He got weaker and weaker and could barely walk by Thursday.  He was vomiting constantly.  We had to carry him everywhere and he would whine whenever you picked him up.  He knew he was too sick and that he was trying to let go when he stopped eating.  Thursday night we cuddled and hugged him as much as possible since we knew what was next.  We took him in Friday morning and the vet confirmed our thoughts that he was severly sick and he was just going to continue to starve to death.  We did not want that for our dog so we made the decision to put him down.  Eric and I were both there with him and we took the blanket he had slept on for the past few days home with us for Bella to have his scent.  It was so hard to watch him go, yet it was good to know that he was no longer suffering...

It is times like this I am thankful that Riley does not understand.  His Autism spared him from this depressing moment.  One day he will ask us about that black, fluffy dog and we can share his story but for now he gets to go on without that heartache.

Goodbye sweet Bob.  We miss you so much!  You taught us how to be good parents for our children.  You also showed us what unconditional love is...

What a difference a year makes...

I have been behind in posting since I am getting ready for a trip Eric and I will be taking without the kids. It will be my first trip away from the baby so I am anxious but it will be a nice break.

When I think about how Riley was a year ago we can see a bunch of improvements, ecspecially at home. Not sure if this is from aging, preschool, vitamin and fish oil supplements, or something else. He is calmer and able to sit a pay attention longer. He hasn't had a big tantrum/breakdown in quite a while. He has minor ones here and there when he doesn't get what he wants. He also eats dinner better and is eating more things. We just kept pushing him and now dinner time is a lot less stressful. He also is signing more which makes him a little less frustrated. All of these things make for a happier mom and dad. We also are able to take him to restaurants again. We have avoided them for 6 months because it was such a nightmare. I just loved when my son was having a meltdown and everyone in the restaurant stared at us like we were bad parents. It used to be at some restaurants we could sit for 5 minutes, play his music and wait it out. He would be fine. Some restaurants though, as soon as we sat he screamed and cried and we would have to get up and leave. Here is to hoping this continues.

We are very excited about our intensive ABA program that we start at the end of the month. Hopefully we will see some major improvements. I am hopeful that the program will really help Riley. We have tried a few ABA things with him and he responds well. Hopefully next year I will be able to write this again with even more improvements.

Different children

My new baby girl, Lily who is 3 1/2 months old is already developing very differently from our older son Riley.  When Riley was a baby we were not sure what he could and could not see so when Lily was born without Albinism, it was like having a baby for the first time.  She sees everything!  If you leave her for more than a few minutes, she notices and cries.  Riley never seemed to notice.  Lily at age 2 months old was smiling constantly when Eric and I smiled or whenever she saw one of us.  I don't remember Riley doing this that early.  Lily is babbling and trying to talk/sing from 2 months old.  She already is a very social baby.  I just remember Riley being different from very early on.  Since he was our first child we didn't know any better so when we went to the doctor we assumed everything was ok.  I love Riley but I know now that he was different from early on and he has always needed extra help.  Luckily, Riley was diagnosed with Albinism at one day old so we entered an early intervention program at 2 months of age.  Even for tummy time and rolling over he needed a lot of physical therapy.  He needed help with rolling over, sitting up and crawling because of his low vision.  Lily is a whole new ball game.  I am hoping she continues on the normal developmental track or even ahead of schedule. I know it is not my fault but it is hard to not feel guilty.  Sometimes I think, maybe I worked too much or didn't play with Riley enough.  I know this is all not true.  Riley has a genetic mutation that caused his Autism and nothing I did would have changed things. I have two different children and as of right now my son needs extra help and attention. I love my children and will continue to do what is best for them. I am taking a leave of absence from work to spend more time with Lily and to take Riley to a new intense program at the end of the month.  I am very excited about the new program, but until then I will enjoy my two beautiful kids.

New blog

Hello all. With the New Year I decided to start blogging again mostly to have an outlet to vent about the things we deal with our children, especially our 3 year old son Riley. He was born with Albinism, a genetic condition in which he does not produce pigment and therefore gets sunburned really easily. It also causes low vision and light sensitivity. Luckily, he was diagnosed the day after he was born so we learned about it quickly. We also found NOAH (Natioanl Organization of Albinism and Hypopigmentation) which has become our second family and through which we have met many wonderful people. My son also was recently diagnosed with Autism, although we knew he had it since he was 2. Our son Riley has always been different from "normal" kids, but it never bugged us. The only that truly bothers me is his lack of speech. I yearn for the day that I will hear him say something to me. I desperately want him to be able to tell me anything and everything. His lack of speech is a major reason for his frustrations and he tends to have fits when he cannot express to us what he needs/wants. He is always giggling and I want to know what is so funny. He is a cute and happy kid and that is what is important but I always want was is best for him. I take him to whatever therapies he needs but it has always been depressing to me that I have to do all this extra stuff for my son to be a normal kid instead of driving him to karate, ballet, gymnastics, t-ball, etc. It is hard to find time for that kind of thing. It is also depressing when everyone around you is having healthy, happy babies. You are really happy for them but quietly you think why couldn't I have had that? It is especially depressing when people who have accidental babies or get pregnant and did not want children have a "perfect" child. As you can tell, I am battling with some depression from the lack of "normalcy" for my son. I started this blog to vent some of this and to hopefully use it as therapy. It is much more healthy than wine :) We had our beautiful baby girl in September and she was born without Albinsim and hopefully will not have Autism. I will be frantically watching her develop and will not relax until she is two. Eric and I are so hoping that she will not have it so that she can have an easier life and so that she will be able to help her brother. Normal sibilings are extremely helpful to kids with Autism since it helps them see what is expected of them. If anyone is out there reading, thank-you! More to come.