Saturday, 22 March 2014

... and my heart went awwwww!

Today there was an event at Sunny's school in order to raise some money for the kids. Sunny did not want to come along but since I had made a cake that I had to drop off there I went alone.

After I handed over the cake I looked at the beautifully handcrafted decorations that were for sale and decided to say hi to his former kindergarten staff. I found them all together in one room where they waited for the kids to do crafts with them.

They were really happy to see me and we talked for a while. It was so good to see them again and I felt very comfortable.

Before I left I spoke to the lady whom Sunny had had the closest bond with. They were so very close back in the days and it was always clearly evident how much Sunny loved and trusted her and also how much she loved him. She was always his go-to person where he felt protected and comfortable, safe and secure. I asked her how he reacts when he sees her now and she told me that he still comes over during recess when he sees her and that she even gets to hug him. She is so impressed with how much he has developed since he left kindergarten last summer and how he has transformed into a small school boy. She was also impressed by how he moves along now during recess, paying attention to the vehicles like tricycles that cruise across the playground. When she was still responsible for his safety she said she was always afraid that he would get run over because he never paid any attention to anything or anyone and now, while he is still accompanied by one person, he stops when a vehicle approaches and is much more in control of the complete situation.

And then she told me how much she misses "her Sunny" and that he really was such a very special boy for her. She said that anyone just has to love him because he is such a tender, darling, and kind child. And she told me how glad I must be that he is my kid and that I am so very lucky to call him mine.

And that was when my heart went awwww and my eyes got all teary. <3 It makes me so happy to feel that someone else is that much in love with my beautiful boy, too. 

PS: I will share the details of where I have been lately in the next post which will hopefully happen soon! Thank you for bearing with me although I have been absent. It means a lot to me!

Wednesday, 19 February 2014

The good, the bad, and the ugly.... and how I feel in general

Apart from the news on Sunny that I shared last week there are also news about me and why this blog is neglected at the moment (which makes me sad).

The good
The positive news is that I finally found a job that seems to be suitable for me. I accepted a job offer some weeks ago and will start working again on April 1, 2014. I cannot tell you how much I look forward to that! Being a SAHM mom was fine - for a few months. However, it is not the right thing for me. I know there are a lot of mothers out there who enjoy staying at home and taking care of the household and whatever they do apart from that and that is just fine. For me it is becoming more and more of a strain. I feel isolated at home. I am missing conversations with adult (and, while Sunny is at school, actually with anyone!). I do not enjoy doing chores. It is just not fulfilling for me. So this is why I look forward to start working part time again soon.

The only problem will be the school holidays and the number of days that I can take off from work because they do not match. So I have to see who will be able to take care of Sunny while I work. I will talk to the respite care we had last year but since she was quite expensive and I will need her more often than last year I need to find another solution.

The bad
Some weeks ago I had something removed from my forehead in a small surgery that my dermatologist referred to as keratoderma which means, in her words, "nothing dangerous and not medically necessary to remove, just not nicely looking". However, I have had it for two years now and the last months it started to ache and bleed and it just did not really heal anymore. So I had it removed because it started to bother me. It was quite big in size and the surgery and healing process were rather painful and tedious.

The ugly
One week after the keratoderma was removed my dermatologist called me and informed me that the lab results came back and revealed that it was actually skin cancer and no keratoderma. Ugh. I was so relieved that I insisted on having this surgery! My dermatologist was shocked because she had been 100 % sure that it was no skin cancer.

She knew, however, that I was prone to skin cancer since I had my first one at age 16 - and had it removed for the same reason, because it had annoyed me, unbeknownst to my former dermatologist that it was skin cancer either. It seems to be a typical thing with my skin that those things look atypical on my body.

Anyway, I need to have two more surgeries in March where more skin and deeper dermal layers will be removed to make sure that all of the cancer cells are removed. The wound will stay open for one week until the lab results come back to make sure the edges of the removed skin are cancer-free. If not, the surgeon will remove more skin and then close the wound either with a transplant (most like skin taken from behind my ear) or, what would be best, try to close it without a transplant. The latter is more difficult because the skin on the forehead does not stretch very much and the scalp does not move enough to close a large wound. But I would only have one straight scar instead of a round one that a transplant would produce. He will have to see what works and what does not when he closes the wound.

How I feel
I have not been feeling too well lately. I am not as resilient as I normally am, I feel lethargic, I am easily irritable and get impatient and unfair quite quickly. I do not like the person I am at the moment and I hope that my new job will help me to find my spirit again. I do not think the skin cancer thing is the reason for my low in mood but I am sure it adds to it. I would just like to sit around all day doing nothing but when I actually DO that for some time (not the whole day, mind you) I feel discontent, too.

Also, I am really looking forward to the carnival starting next week and I will see if my body needs some vitamins or other herbal stuff that can help me.

Right now I feel uncomfortable with myself and I need to find my balance again.

Tuesday, 11 February 2014

The question of Sunny being on the spectrum or not: answered.

I was absent and completely removed from everything with regard to blogging for a long time since a lot has happened over here. Tonight I finally need to take the time to start writing about it all because the heap of things I need to get off my chest is getting bigger and bigger.

Today I will start with Sunny's evaluation for a possible autism spectrum diagnosis which happened during the last two weeks.

The possibility of Sunny having autism has been brought forward by several professionals during the last years, independently of each other. There were some who were quite sure he is on the spectrum. Then there were others who were convinced he did not have autism. The viewpoints were just completely opposed. When we were in Cologne in September 2013 it was mentioned again during our appointment.

This was when we finally decided to have Sunny evaluated for autism. Not that this diagnosis would have changed anything. He is still being fostered in the way that is right for him, regardless of an autism diagnosis. But still, we wanted to know.

So we had two appointments at a facility we had already had two long stationary stays at in the past years. This is why the staff there knew him quite well and they had extensive documentation and evaluations which was a major benefit for the evaluation process; it made it shorter than it would have been at another place.

The first appointment took place together with Sunny. He had to fulfil several tasks and exersises and the way he solved them (or how he did not solve them) was evaluated. I was handed over a questionnaire for his teacher and she was asked to call the psychologist in order to speak about his behaviour at school. The second appointment was today. This time only I had to come since the psychologist wanted to know a lot of things about Sunny's behaviour, so we had time to talk about this in a quiet atmosphere without interruptions.

To make a long story short: Sunny is not on the spectrum. It was evaluated that he does have certain autistic behaviours but that they rather stem from his developmental disorder and not from an autism diagnosis. She explained that this behaviour is more of a side effect.

It was also stated that the gap in this development has widened again. He does make continuous progress but not fast enough. That was like a heavy kick in the guts. It is so difficult for me to look at him with objective eyes and when the hard, cold truths are being spoken they hit me, time and time again. I wonder if this will ever change.

I think I have never left this facility in a good mood. Every time I leave for the one hour drive home it feels as if my car is too small to contain all the thoughts, the emotions, the pain, sadness, frustration, fear, and heaviness I take with me when I leave. It feels as if the roof of my car is about to be blown off from all the negativity that surrounds me and that I so desperately want to get out. My heart is always heavy on the way home because we always leave with another painful reminder that nothing is normal and that there is a lot to worry about.

However, the long way home is always cathartic and I am glad for that. I never arrive at home as sad as I leave. The more kilometres there are between the facility and my car the more I am able to see through the negative fog. To calm down. To block out certain things. Maybe this is not the best way to deal with it. But in these moments I am just glad that I can feel a bit better again.

Last year we were accompanied by a rainbow for a very long time on our drive home. And through the tears that I cried behind the steering wheel that rainbow gave me a feeling of hope and soothing.

Thursday, 23 January 2014

When your child grows out of (insert appropriate thing here)...

We have this problem very often. Due to my son's developmental delay he frequently grows out of things he still needs because he gets too big for them.

For example, he still sleeps in a sleeping bag. He loves to cuddle underneath a blanket - for approximately two seconds. Then he shoves it into one corner of his bed. We have tried to wean him from the sleeping bag and get him used to a blanket but it does not work. All we achieved was having a freezing child being curled up to a ball in the other corner of his bed. Because I was quite sure what would happen I checked on him approximately 10 minutes after I turned off the lights so he did not freeze a whole night. But still. He is too big for sleeping bags that are sold regularly so the next sleeping bag I will have to buy will cost us a fortune because it will be a custom-made product which triples the price. Same goes with his pyjamas that are onesies, too.

Or take his special needs buggy. When he got too big for the buggies that are usually sold he was far from walking good enough to get rid of a buggy completely. So we had to apply for a special needs buggy which costs around 2500 Euro. Luckily and after much back and forth discussion, our insurance company granted it.

When he grew out of his crib we had to apply for a safety bed because only in another universe could we have changed him to a big boy bed and there were no larger cribs available.

It happened with so many things already. He does not really fit into a high chair anymore but when we go out for something to eat the only way to keep him from running around constantly is putting him in a high chair. The last time we were out we hardly could not get him out of the chair anymore because his legs are too long by now. We will definitely not be able to use the high chairs that are offered at restaurants any more because they only have the ones for babies/toddlers. Which leads to the point where I have to become innovative and think of a solution. I might even have to craft something - and this is where the problem starts because I am not skilled at crafting. At all. But very often I have no other choice but to come up with something handcrafted because there is just nothing available on the market to help us with what we still need.

Another thing I am occupied with at the moment is finding a fitting potty. I do not normally talk about potty training here because I think this is something too personal that is only Sunny's deal but in this case it is more about the potty itself. I found out that Sunny is uncomfortable with using our potty seat for the toilet - for whatever reason he does not want to stay on the seat for more than a second. I have a feeling that he might be afraid but I am not sure. Anyway, I thought about getting a potty because I figured he might prefer that. But boy, almost all potties are way too small for him! I searched online for hours on end and finally decided to order about 7-8 different ones and just see how they fit. I think I finally found a solution. There is one potty that is really cool; the housing is bigger and higher than the others so he is able to sit comfortably. The problem with this one is that the part you can take out to clean is too small. It is actually tiny. But I found out that this respective part of another potty that I also ordered and which is quite fitting, size-wise, miraculously fits the housing which is comfortable. So I guess I will just have to buy both of them and combine the parts.

It just never gets boring and keeps my creativity going! :-)

Saturday, 18 January 2014

Ten Things of Thankful: week 01-03/2014

Last week, after thinking about it for weeks, I finally decided much to my regret to step down from being a co-host of the TToT blog hop. As much as I love this hop - and I really, really still do - it started to become a big burden for me. There are things a co-host is expected to do and I had to learn the hard way that my weekends are just too busy to fulfil my duties as a co-host. I cannot keep up with the pace of this blog hop anymore and because I do not like doing things half-heartedly I decided I needed to stop. 

So, my dear fellow ex-(co-)hosts, thank you for being such a cool gang. I have enjoyed getting to know you better and it hurts not being part of this crowd anymore but I just had to make a sensible decision.

With that said, I am still going to try to link up as often as possible and I am still going to find ten things to be thankful for each week. You will not get rid of me completely ;-)

Let's start with the list of thankfuls:

1) I am thankful that I was one of the first co-hosts of this awesome project and that Lizzi deemed me worthy of being a co-host in the first place.

2) I am thankful that my fellow (co-)hosts always commented on my blog posts, regardless of how many times I was not able to comment back on their blogs.

3) This song that I heard on the radio today by Thomas D and Franka Potente: "Wish (Komm zu mir)", taken from the soundtrack of a German movie ("Lola rennt" - Lola runs). It is from the 1990's and I have not heard it in ages but today when it was played on the radio the beat and the speed drew me in immediately again.

4) The "Berliner" (some kind of doughnut filled with custard) I am enjoying right now. Hmmm!

5) So thankful that Sunny is finally using the talker again - and that he is trying to tell me more and more each day! Yay!

6) Our speech therapist. The session today was so well-prepared by her that I heard Sunny laugh, giggle, and squeal with excitement the whole time. He had such a good time which made him co-operate so very well. She really is worth her weight in gold!

7) The weather. Our winter so far has been extremely mild and pleasant, we did not have any snow, and the temperatures were moderate and on some days even almost spring-like. It is already mid-January so if the winter still comes it will not stay very long.

8) My blow-dryer. My hair would look so horrible without it! :-)

9) All the household appliances that make my life so much easier.

10) Sneakers. They are just so comfy! I love high heels but sneakers are such a great invention, too!

Take me to the link-up

Friday, 17 January 2014

Role model

During the Christmas holidays I went grocery shopping with Sunny.

While we were in one of the aisles I suddenly heard a loud noise followed by someone noisily running around. I could not see what was happening, but I heard it. Soon I heard the sounds again: it was some kind of screaming/squealing/yelling and then there were running sounds again.

The sounds accompanied us and at some point I finally saw what it was: it was a boy, approximately 15-16 years old. It only took me a second to realise that he had an intellectual disability. I do not see many kids with special needs outside the school so I took a closer look to see whether I knew him but I did not recognise him. He was happily and obliviously running through the aisles, jumping around and yelling full of joy. He was genuinely happy and everybody could see it. It made me smile.

And everyone was staring at him, of course. He was at the supermarket with his father and his two brothers. When I saw his father I was quite sure that I had seen him at Sunny's school, so I guess the boy is actually attending the same school that Sunny goes to.

Anyway, as we were making our way through the supermarket we met them several times. And although people stopped and stared because of the "strange" behaviour of his son this father did not care for one tiny second. He acted like there was nothing eye-catching about his boy at all. I loved the way he handled all the stares: he just moved on and did his shopping in a completely quite and relaxed way, being helped by his other sons.

The last time I saw them was in the parking lot. His two sons had preceded them and had started to load the groceries into the car. The father and his son were a bit behind and slowly approaching the car. They held hands and both looked content and laid-back.

This man was so at peace with himself and the whole situation that I wished I had more of his coolness. That I could be so unconcerned about people staring at us. That I could be as relaxed as he was when Sunny behaves in an "untypical" way. Maybe, hopefully I will accomplish that when I am as experienced as this man and further down the path of this journey that we are on. He will be my new role model when we feel the stares again.

Tuesday, 14 January 2014

Some good AAC news

After Sunny was enroled in school and the teacher requested him to use the talker more frequently he stopped using it at home. Before that time the first thing he did in the morning when he entered our dining room (where I charge it) was to unplug it and to start pressing his favourite buttons. After some weeks in school he stopped using it at home entirely. He did not even look at it when he entered the dining room for breakfast in the morning and when I unpacked it from his satchel when he came home from school he signed "done" or pushed it away. He ignored it completely

I thought that building up any kind of pressure and making him use the talker at home would be the wrong way so I accepted his refusal. I think it was maybe because he realised that using the talker is not only fun but also work (which is what is done in school when the teacher expects him to engage with the class by means of the talker) and he did not feel like working at home. Maybe it was something completely different, who knows.

So this situation lasted from roughly October until Thursday last week. When he came home on Thursday and I unpacked his talker from the satchel he immediately took it from my hands and started using it. I could see that he was delighted and that he really had fun. He genuinely enjoyed using it, something I had not seen for months. That made me so happy.

When I opened the communication journal from school that day I found a note from the teacher letting me know that he had had so much fun using the talker in school that day, too, that he had been very motivated and that he had been happily contributing to putting together the class schedule for the day.

I am under the impression that the long break did him really good. My impression is that he also uses the talker much more purposefully now and that he slowly starts communicating with it more. Some examples:

- I read a book to him on Thursday about a man being barefoot and it was so important to him to tell me about "shoe" with the talker (and constantly pointing to his foot). When he found the button for "shoe" he was really happy and delighted. 

- After our speech therapy session on Friday the therapist and I talked while I dressed Sunny and myself to go outside (shoes, jackets etc.). She was in the therapy room, we were in the waiting room and we talked through the open door so it was a very casual conversation. Sunny was next to me and pushing various buttons on his talker. We spoke about the weather and the month "March" was said when all of a sudden Sunny pushed "March" on his talker. I am always astonished what he gets when I do not expect it. There are moments when I talk to someone and think he is completely occupied with the book he looks at/the toy he plays with and then all of a sudden he proves that he listened very closely although he seemed to be somewhere else.

- During speech therapy the therapist put up a toy train set with some animals to work on different (animal) sounds and while she informed me
at the end of the session about what she had done with Sunny  he pushed "train" on his talker.

- There were two big rabbits crossing our path during last week's hippo therapy on Saturday in the forest and they had been HUGE. The therapist even wondered if they had been wild boar because they had been really very, very big (and very fast so we could not really watch them closely but we are both quite sure they were rabbits). Anyway, when we were having dinner together that night I told my husband about the big rabbits and how unbelievable big they had been. Sunny seconded me by pushing "big" on his talker.

- My husband and I also spoke about a special toy at dinner and then, all of a sudden, Sunny got up and brought us a catalogue of exactly this toy although he, again, had seemed to be completely occupied with his talker at that moment and not being attentive to our conversation at all. His antennae always seem to be everywhere, catching everything that is floating around. Really impressive!

So there have been many, many moments when he used the talker to tell me about certain things and situations that we were dealing with at that moment. This is a huge difference compared to the time before his talker break when he had mostly just pushed buttons without much correlation to what we had been up to. 

There really has been a time when I feared that the talker thing would not work and that he would never use it. Now I have my confidence back that, slowly but steadily, the talker will be used more and more by him to tell me about the things going on in his head. I do not know what sparked his interest again and I will most likely never know, but for now I am just happy he found joy in using it again. We are taking baby steps, but they are still steps.