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.

Monday, 13 January 2014

Back among the blogging

Is there anyone still reading this blog?

I was on a blogging and social media hiatus lately - mainly because of Sunny's Christmas holidays and back-to-school madness. As I already mentioned several times his holidays are always very stressful for me and I rarely get time to do anything. Now that he is back at school I needed some time to catch up at home with all the chores I did not get to do and while saying that I am back on track would be an understatement I decided I needed to return and get back to writing.

There are so many things I want to write about that happened or that made me think so I cannot wait to get back to writing.

Also: HUGE apologies to anyone who linked up on my blog hop at the end of last year. I know I am a total failure for not getting back to any of you yet. However, I did not want to just skim your posts and then respond half-heartedly and there was just no time to respond thoroughly yet. But I promise I will get back to you this week. Thanks for your patience!

I do not have a clue what happened on anyone's blog in the last three weeks so please let me know if you think there is something I need to know or read.

It feels good to be back!

Wednesday, 1 January 2014

Happy New Year 2014!

Yes, I have already skipped the midnight line so: Happy New Year to all of you!

First of all: I am extremely happy about how many of you answered my call and linked up for my 2013 wrap-up! The biggest surprise: there were so many blogs that linked up that I never ran across before! I am so excited to be reading all of your responses soon! I never expected so many of you to participate so THANK YOU to all of you! You made me really, really happy! I decided I will be doing it again next year because WOW! :-D

Here's to a wonderful new year! I wish each and every one of you and your loved ones good health, best of luck and always more sunshine than rain in your lives!

All the best to you!! May 2014 be merry and bright! xoxox

PS: I will be away for a few days in order to visit my parents. Therefore, I will not be able to post anything for the next days.