Sunday, 25 September 2011


I thought I was prepared to hear the diagnosis
I was not
I thought I would find a miracle cure
I have not
I looked for a cause
I found none
I have looked for some one to blame
I found no one

So now I have started on this journey with you

I use to watch you struggle
Now I struggle with you
I use to let you shut me out
Now I barge in
I use to just let you be
Now I make you join us

I thought you would never be like other
This thought saddened me
Now I see how special you are

It may be years before you call me mommy
I don't care.
I will be daddy as long as you want.

I will be what you need
I will care for you
I will protect you
I will help you because I love you.

All I really want to say is you are my special boy
I love you Mini-Mane
Stay strong and don't let any one tell you are broken
You are not
you are you and you are perfect just the way you are.

This is something I have been working on for my son. I hope some day to share this poor attempt at expressing myself and this blog with him. I want him to know that I love him and want to help I am just lost at what to do.

Wednesday, 21 September 2011


I was called mommy for the first time yesterday. I almost cried. I have been Daddy for so long I thought that I would be that along with DH for the rest of my life. Not much else I wanted to say. For now life is continuing as normal as possible with everything. I wanted to share how wonderful I felt.

Sunday, 18 September 2011


I wish I could stop mini-man from biting. It is starting to cause a lot of problems. First he was kicked out of daycare for biting, which sucks but I can work with (they can not control him and it is becoming a safety issue). The second thing is he has been having issues in school and they have written me a note to see what we do at home but I have nothing we are doing that is working. Now today we went to a new church so that I could try and find a place of worship that better meshes with my beliefs and he could not stay in the nursery due to biting. I am just at my wits end.
Any one have any ideas of what to do for him?
PS. we are going in for an ultrasound tomorrow to check his kidneys because he has Poland's anomaly. I will put more on this issue later as I know more.

Wednesday, 14 September 2011

A day in my life

I have been trying to post on what my daily life is like and every time I try it doesn't work. It is so hard to try to get through the wall into mini-man's world. I have some different types of coping methods bit they are not the best. I have been using them because he gets violent if not worked with. He needs quiet, and to be calmed down when he gets upset. If this doesn't happen he will start to get violent. I feel he plays too much computer but I don't know what else to do with him. I fear that he will hurt someone if allowed to become to upset. I deal with multiple temper tantrums daily and have tried all the traditional methods but they have failed.
On the other hand I get to see the world in a new way. I see how overwhelming it can be if one lets it or doesn't block things out. I also get to see the wonder of a new thing every day. It is so much fun to see the bus as a exciting new adventure or going to a Dr as a  big room where I can explore and play.
The best thing is getting to enter mini-man's world. I am rarely given this privilege but I am learning to relish every minute of it. I think that is the hardest part. He is not ready to live in our world yet but is slowly entering. Today though I was in a place where a blanket was a place to hide behind an peek-a-boo is the best. The blanket became a movable wall to hid behind and it was very special but hard to describe.
I thought that this would be the worst thing that I ever would hear about my child, but I am starting to see this as a blessing. It is making me learn and explore this world I have become disillusioned with in a new light.

Thursday, 8 September 2011

The whole story

OK so here is the whole story of my oldest son because he has not always had a healthy or easy life. I know i may leave some things out and for that I am sorry. If you think that something is not making sense let me know and I will fill you in and go back and fix it.
Mini-man was a surprise baby and I was on Zoloft and I wonder if that is the cause of some of his problems but I dagress. My pregnacy was complicated by pre-eclampsia that cause me to be induced. I am not even going to talk about the labor because it was not exactly normal but not too abnormal.
I decided to booby feed and was given help but no one ever told me one thing about booby fed babies is they poop a lot and constipation can indicate a problem if it is an ongoing issue. One other thing about the poop is it should not smell horible. Well guess what it was until around 18 months when we found he has an allergy to milk and soy. That helped with the constipation and the ear infections. He had 6 up until this point which is too many.
That was the first part of his life with the medical issues. The second part starts with some regression with talking about 18 months where he went from some basic speech being some behind but not far to not talking at all. At this point we started speech therapy. 
The next thing that happened is he got RSV and was really sick. At this point he had a hard time breathing so after going to the Dr that morning with it we ended up in the ER with breathing issues, a high fever, and almost catatonic. It took months to kick this. So any way we got over that and we started the autism evaluation.
Now we have had shingles for 2.5 months and are getting that look into because it mean that there is a possible immune issue.
I was also told today that his chest muscles on the right side are either missing or severly under devloped. Ugg and to end this all we have been dealing with iron and vit D defficance though out. We did get the iron sorted out and only have to fix the D issues.

Monday, 5 September 2011


OK so we did a family camping trip this weekend and it was . fun. The only problem was the change in the routine. Mini-man does not do change at all. I understand that it is part of what is wrong but it is driving me crazy.
I really just want to be able to take him and do something different and not have a melt down. Its not that I cant deal I just want to be able to relax with my child and not worry that everything is going to happen at the same time in the same way as always. I know this will not be happening any time soon.
The other major problem we had was he could not sleep and I wanted to cry. In day to day life sleeping is a hit or miss issue and I deal with it. I thought with how tired he was sleep would have been easier but no it was harder. I also felt bad because he stayed in my parents trailer one night and woke up at 3 am and couldn't fall back asleep easy.
My mini-man does love himself some water though. The first thing he did when we got there was say beach water and run to the water. I am so thrilled that he used his words to say what he wanted. We were afraid that if he got out of the tent he would run into the lake and get in trouble. Luckily he didn't.
We had an episode of mini-man repeating "sorry" over and over like and with the tone like he was sorry about something. I just wish I knew what was wrong.
Other then what I listed above nothing too out of the ordinary for a two year old. He did remove his diaper when playing in the car so DH and I could pack. This ended poorly by having poop all over the drivers seat in the car. The clean up wasn't as bad as it could have been 30 min lots of soap and hot water and it was OK. The hard part was getting him in a shower to get the poop out of his hair,. no clue how it got there.
Well I am off to bed, tomorrow is the first day of School for mini-man. Hope putting him on the buss goes well.

Thursday, 1 September 2011

ASD- Austism Spetrum Disorder

I got confirmation of what I already knew today Mini-man has Autism. I am more upset about this then I thought I would be. I know that he is on the high end and I knew somewhere deep inside that he hast I just didn't want to admit it to myself but I still pushed to get him tested.
I am now researching the best therapies for him. I know that he responds well to animals and that Roo, the dog we are watching, can bring him out of his shell when he withdrawn. This is why I am thinking about getting him horseback riding therapy. I am also thinking about getting a pet for him. I really don't know.
There is so much that I just don't what to do. This is a lot harder then I thought it would be to accept.