jumping hoops

It feels like a never ending job to jump hoops.There always seems to be yet another person one needs to convince that you know what you are talking about and that you know what your children need.
It is frustrating to no matter how many trainings/therapies and diagnosis there is always some professional who wants to say well you need to try harder.

I love my kids but I am not part of the organic/genetic equation and the disabilities are what they are --the wheels on this train started to roll way before we ever came into the picture.
  Often I would like to say I am trying to be part of the answer not part of the problem.

procrastinating

I keep erasing this for a week.
Zach has had a rough few weeks we have been adjusting some of his bipolar meds and had to have him admitted to the hospital just to have a closer eye kept on things. 
This week has been full of medical updates ,school work and appointments. 
Soon we will be running up to Plymouth for Liza's immunology appointment so I can get trained on how to do the injections from home.
I never know how much to share and I don't want to sound like I am complaining either.
This is the life God chose for me and while somedays are hard I am thankful for my kids.


I read a book the other day and it talks about how special needs families need to learn how to tell friends and families what it is we need from them.It goes into how intimidating our world is and how they feel helpless and clueless on what to do for us.


I get so caught up in "running my life" that I forget that if I asked for a specific thing that maybe I could lighten my load some.


Assuming people can read  your mind just doesn't always work.

at last

I have been meaning to sit down and write this for a week now,

The first week of school was rough and hopefully it will improve .

 I seem to have writers block lately -I'll have great ideas and then when it come time to sit down and write the moment has passed.

Summer is over

Well in a few short hours both my  kids will start school. I love the fact I can be part of their learning with them here online. I used to cry when school started and Zach had to go to school --I love our good days -our days of laughter /games -the off days with bipolar rages and Liza's chronic infections they get to be trying .I pray that we get through this ... I send warm thoughts and prayers to all parents with the upcoming school year especially to those of special needs kids.

Zach is  nervous tonight -he has paper ready to go and is excited about starting ...
Liza's told us tonight she was going to work hard in 'garden....

Tasha

No longer will we hear your howl or talk to us,the other day I thought I heard you ,I turned to only remind myself you would never greet me again.
We know your pain is gone but our is not ,you were more then the family pet you were part of us.
No longer we will see you play dolls with Liza and allow her to dress you with hair bows,when she would be upset you used to put that big Samoyed head on her lap and smile and comfort her.
Zach would take you for walks and you would lay at his feet while he watched tv.
We went to Camden and it won't be the same without following your big fluffy tail and how you would look back at us with your smile as if you were saying what is keeping you.
You were an amazing friend - my morning coffee isn't the same without you sitting by me and flopping your paw or nudging me with your nose bumping my cup .
You maybe gone but not forgotten

Spinning my wheels

I have several ideas in my head but not sure how start any of them... I wonder if that is how Zach feels daily.

Yesterday was a great day .. a typical non-stress day.... We have made a Rabbit Care chart which seems to help--it has helped alot to get some organization on things.


Today so far is a lighthearted morning ... Zach doing dishes ,Liza playing with tractors....

last night

I was listening to Bruce helping Z with his chores of sweeping off the basement steps and sweeping the basement floor.Z has a hard time with sequencing of steps-in theory he understands that task at hand but things get muddled up inside and he can really have a hard time.Coordination of holding the broom/dust pan and getting it to dump in the bag can be a challenge .
I could hear it in Bruce's voice he was trying hard to stay calm and break steps down for him.In both Bruce and my past we have been incharge of training co-workers for our jobs and we did pretty well both of us had been told we did a good job. But when it comes to our kids and their brain injury /executive function there is little we can do. We can remodel and work with them but the cards are dealt.

I feel old....

I was talking to a Senior girl last night and I made a comment about Rambo( Zach was shooting his dart gun) She looked at me and what was a Rambo -- I tried to explain and she shrugged her shoulders said "weird"

Totally made me feel old..... everyone my generation knows who Rambo is... sigh

My parent's storm 12 miles away

Tyler

We have power

The last few days we have learned how to get buy without all things connected to power and must say we are very grateful for the line men who have our town up and running or at-least in the process of.
The kids and I were home alone when the tornado hit... Zach has such fears of storms I was impressed how he helped me and managed to hold it together.
It really came quick--when the TV went I turned on the radio and only got 1 station to come in and it was really broken up.. all I heard tornadic storm heading east of Lake Benton as I quietly shooed the kids to the basement I saw the green glow in the clouds and a flurry of something up the street-and patio chair slammed up against the house... The kids and I huddled under a blanket while we heard things bang and thud against the house .I thought it to be hail but when I got upstairs I saw different.First all I saw was a big branch down by the patio door- thinking ok well we gave a branch down could have been worse... then I look harder and there was power lines snapped off- trees down everywhere..the street was flooded Some loss roofs ,cars and sheds and I think I heard a house too,,
With no power it was hard to know anything except what you could see.
My cell phone wouldn't work most of the time I was able to get one text to my sister to let her know I was ok..Finally I got thru to Bruce who was coming home from Brookings and as he got closer to home he saw more and more damage.Fuel tanks on their sides,roof blown off.. he was worried about us and I about him.. it was a huge relief to hear he was parked around the corner and was on his way over walking thru the maze of power lines and trees..

He scooped us all up and just held us thanking God we were ok.
I finally got a short call to my mom who had a huge part of a tree on their only door out and the garage had fallen in on the car and everything else.But they were ok and she told me my sisters were ok. The phone line went dead.... just like God let me touch base but that was it.
I was so impressed on all the emergency personal who took time to walk the streets and make sure everyone was ok. Our little community really pulled together .. helping out . 
I still haven't been able to get to the folks ... while our clean up is minor compared to some the kids are pretty on edge and  and all the damage seems to have them both on over drive .
My parents are in good hands my sisters and other relatives have pitched in to help.
While this isn't anything you want to go thru my kids saw some really good lessons too on helping out each other in a time of need.


 In the mix of that was the power line guys working and talking back and forth on their radios. There was alot of long hard hours put in but our town is shaping up...

Dreams

Zach has very vivid dreams and they are usually acts of violence done to him. This morning at 4:45 am I get a tap on the head mom can you talk to me for a bit...


My understanding is that both the bipolar can cause vivid dreams as can the meds he takes to control it.

He had me check Liza to be sure we all were ok..His dream was so real he thought he was outside laying on the ground bleeding from a stab wound.
Poor kid he struggles with social skills anyway and they have to haunt his dreams ...

I poured a strong cup of coffee and listened to him spill out how he was dreaming he was walking to friends house and guy jumped out of the bushes and attacked him and then headed to the house to get me.

After he calmed down with the assurance I was here to keep things safe he went back to sleep..

It makes me think of when I was at home and would get up in the middle of the night if I was scaredc or something and mom would get up and sit with me.

There is nothing like a mothers love and her ability to fight off the unseen demons.

What started as a rough day ended on a happy note

Dr appointments

The kids pulmonlogy appointments went smoothly....
Liza's cardiologist one took awhile. She keeps having irregular EKG they don't really know why her ECHO's always look good.

The question I always ask is how much does all the chemical exposure /drug /alcohol and other toxins she was exposed to prenatally effecting her ..

I bring that up almost everytime and yesterday I was told it should have no factor but in order to find out we would have to address FAS...Basically I was told in order to address FAS I need to take it to a FAS  DR....
So I guess that is what our next plan is I am going to push the issue and get referred to a FAS Dr...

Yesterday

While at therapy with the kids I was watching and listening to the therapists chat back and forth while working with the kids.They weren't being unprofessional in any form ,but it made me think back when I worked in the nursing home and the workers would talk to each other while working with residents . Often the residents weren't able to communicate -while watching the to each other it made me think I get it now.
My kids can communicate Liza struggles but can communicate some of her thoughts. there was a boy who I will guess was autistic and non verbal and the worker was very good with him and by no means am I saying I thought they did anything wrong.. but watching them talk just made me think about the whole even if they can't respond doesn't mean they aren't hearing or understanding.