Exposure

We went on a little vacation to a village called "Sun Park" just two hours from here. It's really fun for the kids there. You life in little but spacious houses in a park that includes a big water park and an indoor playground.
Nicky and Philip had so much fun at the water park. It comes with a canyon where Nicky just loooved to drift around. He looked like a smiling cork, really cute. Compared to the days we had before he was just a different child.
The park also had this indoor playground with the usual stuff you find there. It also had a stage, where once a day there was some animation for the kids, like dancing, theater and so on.
As soon as the music started, Nicky was right in the middle of the activities. First the animation people where a little unsure, but they didn't mind. BUT, they other kids ;O) . Some stopped dancing, just being amazed by Nicky and his behaviour.
As a parent you tend to pull him out there, but i think, every exposure to typical children is the best you can get both sides of the kids. I am always open to answer questions to both kids and parents. But parents don't ask, they just look. We are used to that sort of exposure. It still hurts but you just grow that shell. You ask yourself "When do people realize that something is wrong with him?" . Maybe when he starts to wiggle with his hands, maybe when he screams out of joy (for them it's probably more the scream of an animal). Maybe when he starts his crazy dance till the sweat runs down his temples.
You get that almost every day. Even we try to avoid the crowd, we also train with him to go shopping and to places where it can be loud.
But with a child on the spectrum, you never come unprepared. You know where the exit is, you know you have to pull something good out of your pocket to get him out of a favourite activity. You know when his limit is reached.
Today school started after two weeks and he looked very happy seeing his bus driver Heike this morning. We have to think about summer vacation, six weeks can be very long. We have two months to think about it ;o)
Have a nice spring day today! It's beautiful here, everything is in bloom and the different shades of green are amazing.

Spring and school vacation

It has been a while since i posted, the reason is simple: School vacation. It means for most of us parents NO vacation, it means stress and bored kids. For us, it runs from a bored 5-year old to a hyper boy on the autism spectrum. That exactly means that the house has not seen a mop in over two weeks, my washing machine is on vacation too (b/c i have no time to even fill it). We wake up, we eat, we keep the kids entertained, we eat again, we try to keep Nicky quiet, b/c all windows are open due to the temps. We do all the things kids love and still he is so unhappy right now. It's depressing for us, we are not moving an inch forward.
So, it's been hard, but the weather is great, temps in the 80's, we eat outside on our little terrace, or we sit on our balcony over viewing the lake while watching the kids.
I have to admit, with the nice weather and spending the evening on the terrace, i am back to enjoy 1-3 glasses of Riesling wine. It's just sooo good, and it's my treat for a long, hard and frustrating day. No worries though!
And i have Wolfgang, who fights with me through the day, who makes me lough, even when i am close to tears. Did you know 80% of parents with autistic kids getting a divorce or getting separated....?
A Roller-coaster this last two weeks; we are going on a short trip Friday through Monday, let's hope Nicky is doing o.k. with it.
Happy spring!

Eating paper

We finished the second week without any supplements. Everything is good. But i see some bad behaviour slowly coming up again.

One is eating paper (also called PICA) and chewing on everything like crazy. I also see an increase in head stimms during play. Nicky also chews a lot on his clothes again.

I know that it can be a high blood level of lead, it also can be that his body has iron-deficiency anaemia or that zinc is missing.

So, because we do not eat any more fish any longer (full with lead!) and Germans haven't used lead in ages in their houses, we can ignore the lead problem for now (we also had no high lead levels in the last test anyway!).

And when it comes to iron, it was not in Nicky's supplement program. So i guess it really is zinc that's missing.

So i hope that the next issue of InStyle magazine will be left for mom and not for the mouthing Mr. Nick.

Sundays, sundays

We had some very good days with good sleep. Nicky ate very good and no bath room issues. On Saturday we went to the city of Wetzlar, where we spend the day with Anna. It was very peaceful and Nicky kept walking with us up and down the hills of the city. We even sat down in a street cafe for half an hour. Nicky was just very good. Even the drive in the car was good.

But then came Sunday. And just like last Sunday Nicky was a different person. He was loud, restless, uncooperative. We had to give him Benadryl again. But that didn't do the trick right away for him. After 3 more hours he finally calmed down and even fell asleep on the couch for a nap.

So what is going on with him? Is it something he eats or does on Saturdays that pushes him over the edge on Sunday?

Well my birthday is next Sunday, i just want my love bug Nicky feeling good.

Wednesday march 11th and Thursday 12th

The last days where uneventful. Nicky was mostly calm and contend. On Wednesday he had issues with falling asleep and he woke up a couple times during the night so w. had to stay with him the whole night. I think the pomegranate juice made him hyper, i will give this another try in a week. Pomegranate juice would be so great for him.
Yesterday he fell asleep on the couch at 7pm and slept through the night without once waking up.
We absolutely will go back to supplements, but we will watch it closely.

Today our friend Anna from the US is visiting us for the weekend. She is in Denmark for a semester right now. We are all very excited. We will have some "Wiener Schnitzel" tonight. Everybody loves them and they are SO typical for Germany. Tomorrow we will visit Wetzlar and Sunday Frankfurt. Philip is jumping in circles right now, he can't wait.

March 10th, first day "Without"

Just a short update like promised: This is the first day without supplements and herbal teas. Nicky did good in therapy session, no stimming, no craziness, no loud noises, good visit on the potty ;O) . He fell asleep without melatonin and through the night.

Starting over

Once in a while we do a "Starting over" with supplements and treatments for Nicky. It gives us answers what really helps him and what not and especially what makes him crazy and stimmy. This is the perfect timing right now: We got the test results back last week (see post) where we saw some improvements and some things we have to fix, like the uric acid problem.
We had a terrible weekend with Nicky and couldn't figure it out why. He was loud, unhappy, restless and just kept us on our feet for hours. On Sunday noon, i finally gave him some Benadryl. It was the only thing i knew would help him. And it did, he finally sat down for two hours before he started all over again.
It brakes your heart, and the worse is, there is NO one out there who can help you. It really could be that he is in pain, but there is no way to figure it out. Last night he woke up, sweating, screaming, and i almost heart an "Aua" . It can be everything, just a nightmare, his stomach, his liver, his kidneys, it could be life threatening.
But we have, like almost all parents with kids on the spectrum, given up to talk to pediatricians and neurologist about test results. They don't give it a look, i saw it last week at an appointment in a children's hospital. The doctor was really nice and good, very sensitive and helpful, but he doesn't care about biomedical stuff.

Well anyway, today we start with "No Supplements at all" and i will use this blog as a dairy on his behaviour. I will especially look into sleeping patterns, behavior (stimming, craziness), constipation problems and how therapy sessions work.
See ya later!