Friday, 5 September 2014

Pain and healing

Today was our last speech therapy appointment for some months to come. We will now start a therapy unit of OT with a focus on sensory integration. Our SLP says that she needs a new basis for commencing her therapy and sensory integrations shall provide this basis. She will be our therapist again after this break, thankfully!

We spoke about many things today that were on her mind, like Sunny's talker and how we get him to use it more at home. Or how exhausting it must be for me to read books to Sunny ALL. DAY. LONG. every day and that I probably will be glad when school starts again the week after next week. And yes, I am exhausted and will be so glad when we have our regular schedule again. I know she thinks about Sunny often and how she can help him to improve his communication skills. She also made him say "Määäääh" for the first time.

This woman has become an important person in my life. She always gets me immediately and sometimes she did not only do therapy with Sunny but she also helped me in so many ways with her insight, her experience of life and her empathy that she became a very valued person for me.

So today when we parted and we had to say good-bye (and, if you have been following this blog for some time, you know what is going to come) my eyes welled up with tears.

SLP: Oh, don't cry! We are going to see us again, remember?
Me: Sure, but you know me, I cry all the time!
SLP: So you need another holiday after school starts again!
Me: This pain is rooted so deep inside me that no holiday will ever be able to heal it.

Her looks spoke more than words.

On the way home, in the car, I thought about this. Why do I always cry in situations like these? When someone tells me that I am an awesome mom and that they do not know if they could do it. When they congratulate me on things that are just normal in my opinion (like taking care of my son the way I do it) but obviously a big deal for anyone else. It always feels weird to me because I believe that what I do is just natural for any mom (but I am aware it is not). When friends and strangers are kind.

I am not sure. Maybe it is because it always makes me aware of how our lives are NOT normal when it is MY normal and the only thing I know. Maybe it stirs up emotions that I try to keep under control. I think of myself as a rather positive person but my heart is sometimes so heavy and moments like these just make it spill over. Sometimes just one word is enough to make it overflow or burst. 

I also thought about that second last line from "Welcome to Holland" by Emily Perl Kingsley that says

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

Is that really true? Will this pain always be there? Deep down inside me somewhere, lingering, always sitting in a corner of my heart, waiting to emerge on a suitable (or not so suitable) situation? Will I still feel this pain when I will be 50, 60, 70? Will it fade eventually, become softer and not as sharp as it still is sometimes?

I do not feel it often, but I know it is there because it reminds me from time to time that it is still with me. Maybe it will change over the time and grow with me as I grow from this experience that is our life. Or maybe it will stay as it is forever.

Either way, there is just one thing I know: I love Sunny more than anything else and that helps me overcome this pain every single time. This love heals my heart.




Wednesday, 13 August 2014

Houston, we have a sheep!

Recently our SLP has been working on animal sounds like frog, cow, sheep, cat - stuff like that. She is using a mixture of Castillo Morales (more or less a special massage of the oral muscles) and TAKTKIN (which derives from the American PROMPT therapy and helps the patient by simulating how certain sounds are being made) in order to help his mouth form different sounds. I was going to link the two therapy methods but I could only find German links, sorry for that. 

She has already been able to make him do the frog sound (QUAK) some sessions ago with the help of her hands. And he was the happiest frog ever heard! It brings him so much joy! Today when we walked down the stairs to her office he tried to do the frog by himself and then laughed.

(Credits)
 Today they worked on the sheep. Sunny tried really hard and both of us showed him how he had to form his mouth. She used her hands helping him to adjust his mouth and lips while I slowly made the sound and showed him my mouth movements. He did pretty well and we were quite content. When the session was finished the SLP and I talked about various stuff while I packed up our belongings when all of a sudden we heard a loud MMMÄÄÄÄÄHHHHHH! Our heads flung around and we saw Sunny, his face beaming with happiness and pride!! We could clearly see that he was so very happy that he had managed to make the sound correctly - and all by himself! We cheered and applauded him, I cuddled and kissed him and he jumped up and down from excitement.

When we returned home Sunny proudly and happily demonstrated his dad the sheep sound several times. And he even managed to do it correctly two or three times.

It is such a big deal for me and I am really happy how well he did! We will be practicing the sheep a lot in the future!! Yaaaaay!



Gentleman of the year

Just a short post today. This is one of my favourite songs right now because it makes me happy.

And, let's be honest, I am sure everyone of us would just love to dance in public without even caring for a second what it looks like! ;-) Just feel the beat, let the music warm your soul and oblige to whatever your feet, legs, and arms tell you to do!


Enjoy! :-)



Monday, 11 August 2014

A detour

This post was planned to go live last week. I had already written most of it on Monday and decided to finish and publish it on Tuesday evening. 

Then we took another detour. I would love to say it was unusual but it was not since Sunny had another concussion last week and we stayed another two days at the hospital. It was the second concussion this year and the fourth in his life. The last one was at the end of May this year. It is funny how the nurses all know us and greet us almost excitedly when we walk in. Can I just say that I am sooo fed up with all of this hospital stuff??

Here is the short version: I was about to make Sunny ready for bed and decided to open the windows in this room in order to ventilate it before he would be going to sleep. I turned my back to him for all of about three seconds when I heard a loud noise followed by immediate crying. As I turned around I saw him lying next to his changing table with his face on the wooden floor. I am not exactly sure what happened but I guess he tried to climb up the changing table and crashed while trying.

So I scooped him up, turned him around and saw blood in his mouth. He had hurt the inside of his cheek and was bleeding. And he was crying. Since his pain tolerance level is rather high I always know that it really hurts when he cries. The right side of his face was red and already turning a bit blue so the impact must have been quite strong. I consoled him but he was back to his quirky self soon and seemed normal at first.

After some time I put him to bed and snuggled up to him when he suddenly started yawning. However, he was yawning every ten seconds and I think about ten times in a row. That was when it dawned on me that he probably had another concussion. I am a concussion expert now with four of them so I know the signs. I went downstairs with Sunny to tell my husband about the accident and that I was presuming he had a concussion. I told him that I was thinking about going to the hospital.

Sunny, however, seemed quite normal again at that moment and had stopped yawning while I was carrying him so we decided to wait a while and see how it all develops. When we returned to his room he did not want to lie down anymore but instead sit on my lap and snuggle close to my chest. I presume he was already feeling sick by then.

When he fell asleep sitting on my lap (Sunny NEVER sleeps outside of his bed!) and even seemed to become unconscious at some point everything was crystal clear so I called my husband to take care of him while I packed our hospital bag. While I was packing Sunny threw up all over my husband so I hurried as much as I could and took him to the hospital. It was after 23:00 when we could finally move into our room and crash in our beds. We were both exhausted.

So, that was that. Bummer.

And this is the post I had prepared to publish earlier last week. I just posted it some minutes ago where it belongs, date-wise.




Tuesday, 5 August 2014

Farewell, dear first grade and dear class! :-(

Last Wednesday was Sunny's final day of school before the summer holidays.

It was a sad week because we had to say good-bye to Sunny's class and almost all his fellow students. One of them is moving up to a new class (he is a lot older than the rest of the kids and will be in middle school from now on). One of them will be leaving the school in order to attend an inclusive classroom in another town and facility.

Sunny's most important friend will be leaving his complete home life and environment behind to live in an orphanage/children's home and this fact is breaking my heart so much. What is even worse is that the children's home is roughly two hours away so we will not even be able to visit or meet him somehow by chance. Sunny's teacher could not go into detail about the reasons but she mentioned that the social surroundings and situations of the child were very difficult and that he will be staying in the home for a longer period of time. When she told me about it she had tears in her eyes and I know how hard it is for her, too. She is such a loving and caring person, I can totally see why it hurts her as much as it hurts me (or probably much more, given that she saw this boy every day). She pledged for a home in the same town that Sunny's school is in but the parents and the youth welfare service mutually decided for the other home.

So there are only Sunny and another boy left of the initial class and with no new students to enter elementary school this year Sunny and the other child are going to be divided to the other two classes left in elementary school.

Sunny's aide will also be leaving which is another hard blow that we have to stand. Sunny and him shared such a strong bond, words were unnecessary between them. They were very, very close and did so much together. On Mondays the class was usually taught in the woods and outside and Sunny and his aide loved to saw, hammer, and drill wood and make crafts. His aide was tireless when it came to working with Sunny and I guess he enjoyed it as much as Sunny did. I know he will be greatly missed by my son.

I am very grateful that he will keep his loving teacher for most of the days in the new class though. She will be in another class for two mornings a week but otherwise will be in Sunny's class together with another teacher. I thank the heavens for that! It is the only good thing about all the changes coming in the next school year.

The new class will have seven instead of five students and I wonder if or how this will affect Sunny's attention span and capability to learn. I hope it will not affect him in a negative way.

So last week on Monday we had a final farewell barbecue and spent some time together for the last time. The parents were invited, too, so it was a bittersweet experience and I shed quite some tears as you can imagine if you have been following this blog for some time.

I just hope that we will be able to keep in touch with the boy that left for the inclusive classroom since Sunny likes him a lot, too. 

I am a bit worried about how Sunny will be able to cope with all of these changes. I hope he will be as happy in his new class as he used to be. He loves to go to school so much, it would be such a shame if that changed. Just imagining it makes my heart heavy.

For now, however, we will try to enjoy the summer holidays that lie ahead of us and I will try not to be consumed by negative thoughts about the coming school year. I will cross that bridge when I get to it.





Friday, 4 July 2014

Two insights

I spent the past weekend at my parents, together with Sunny. While I was there I had two insights that made me think and ponder since then.

The first one is that Sunny's disability is obviously getting more visible or apparent now. For many years this was different. I have always wondered what other people see when they look at him and how others perceive him. In the past a lot of people did not realise that he was different because his disability is invisible. Now this seems to change slowly. It is not his appearance but rather his unusual behaviour and his inability to speak that makes people realise that he is different. We were at the swimming pool together with my mother on Saturday morning where a group of three kids with special needs and their caretakers were, too. Before we were about to leave one of the caretakers approached me and wanted to know when we were going to leave because apparently there is only one key for the changing room designed for people with special needs and they wanted to make sure that we would not leave at the same time. I did not even know that a special changing room like that existed so that was no problem but I was a bit surprised because she had only seen Sunny and me interact in the water. Sometime earlier my mother got into contact with a stranger and after they small talked for a while he asked her about Sunny, what kind of special needs he had and so on. We also spoke to an elderly woman who also mentioned that she had experience with disabled kids. All of them were nice and kind but it got me thinking because those encounters were so heaped and happened within two short hours. What is also remarkable is that all of them had had some kind of boundary point with disability in general. Maybe others do not dare to talk to us that easily or they do not perceive it yet like experienced folks do.

However, this is a new experience to me. On the one hand it might make it easier in the future to deal with the stares because people will realise that Sunny does not behave strangely because of bad parenting but rather because he has special needs. But on the other hand it is another difficult step I have to take on the road to acceptance. Until now it was still possible to disappear in the crowd and not stand out that much. Sometimes I think it is easier to have a diagnosis immediately after birth. That does not mean that those mothers do not have bad days and feel pain for various reasons and because society behaves horrible, too. It is so hard to explain what I mean. For me the process of acceptance and learning to deal with it is so long because it happens gradually since Sunny was born. I have to adapt to new situations and adjust my way of dealing with them constantly. I guess this will still take some more years.

The second insight is that I do not want to talk about Sunny's special needs with everyone. We had a class reunion while I was at my parents and one of my oldest friends (whom I spent my entire schooldays with, starting in first grade) and I had a long talk. We had not seen each other for a very long time and updated each other. Because he is a doctor now he asked me why we were at the hospital frequently (we are friends on Facebook so he knew) and when I told him that Sunny has special needs and went into detail I saw pity in his face. He touched my arm and said that he was so sorry. However, in my opinion there was no reason to react like that because I talked to him in a normal tone, no tears, just delivered facts in a normal way. I said that he did not need to be sorry and that we were fine but his pity did not vanish.

Do not get me wrong, I am not ashamed to speak about my beautiful son and his special needs. I am so proud of him and I love to show off his gorgeously beautiful face. I love to talk about his contagious laughter, his wit and his curiousness, his brilliant memory and the way he speaks without saying hardly a word. What I do not want is others pitying me for him being just him.








PS: Happy 4th of  July to all my Amercian friends and readers! Enjoy the day and have fun!

Thursday, 19 June 2014

Second birthday

Today marks the 6th anniversary of Sunny's major surgery. For privacy reasons I am not going to disclose what kind of surgery it was. All I can say is that it lasted six hours, that Sunny lost a lot of blood, that two surgeons were needed, that it affected a very sensitive area of his body, that he spent four days in the ICU afterwards and another three days in the regular hospital ward, that I had never heard of a surgery like that before (but later met other kids that had the same surgery and that it is not as rare as I thought - but still something most people never heard of before), and that it scared the hell out of me.

I will never forget how I carried him all the way through the hospital in my arms until we reached the patient air lock. I tried to be strong so that Sunny would not be scared but I failed miserably and cried. He started to get upset, too. Then the anaesthesiologist approached us and gave Sunny his sedative. Within two seconds he got completely limp and heavy in my arms. I was not prepared for it happening that quickly and I was almost convinced that he had died that very second. It sounds completely ridiculous writing it now but at that time I did not think, I just felt his body become heavy and limp and switched into panic mode. The anaesthesiologist said "we need your child now" but I could not give him away. He repeated "we need your child now" over and over again several times until he finally took him out of my arms and softly placed him on his bed. I will never forget the sight of his legs dangling lifeless in the air when he took him out of my arms. A second person lifted them up while they lay him down. Then the air lock closed and I fell into my husband's arms and cried hot tears.

The minutes turned into hours until we were finally told that the surgery was over and that he was brought to the ICU. We had to wait another hour until everything was in place there and we could finally visit him. I will never forget the moment when I saw him again after his surgery. I was so glad he was alive!!! He looked so beautiful and peaceful because he was still asleep. 

I will never forget this date and although the surgery was not life-threatening it was a very difficult, scary one. I will be forever grateful that everything went well and I celebrate this date every year. This year is no exception. Here's to Sunny's successful surgery! 



Wednesday, 18 June 2014

A magic night to remember

We attended a special event recently: the so-called Dreamnight at the zoo. It is an annual event, taking place preferably on the first Friday of June in zoos around the world. This special event was invented for children with chronic illnesses or disabilities and their families. It was founded in the Netherlands in 1996. The employees of the zoos dedicate their time without any reimbursement to make magic happen for all the kids that get to visit the zoo.

It was the first time that we were able to get an invitation since they are very often handed out to self-help groups (which we are not part of due to our lack of diagnosis) or a few special hospitals (none of which are ones we are treated at) so it is almost impossible to get an invitation if you are not part of one of these institutions. Luckily for us, a friend of mine was there to make a performance and she was handed over three invitations to pass to someone else. She knew that I had been trying to go there so she gave us one of them.

On the day of the event the regular visitors of the zoo are requested to leave earlier. Before we got admittance to the zoo there was a performance with drums and dancers in front of the entrance which all of the kids and parents really enjoyed. Then the gates were opened and we could go inside. There was so much to do and see that we almost had to hurry to get to do all the things we wanted to do.

First of all we started with feeding the monkeys. We were given pine cones which we stuffed with popcorn and various other foods. We sprinkled honey over it to make the food stick and then we threw it into the compound. The monkeys loved the pine cones.

On our way to the monkeys we were able to pet chickens and chicks. Sunny was very anxious and did not really want to do it but he was fascinated at how the chicks were held by the zoo personnel and talked about it a lot in his own special way.

We went on to do some pony riding. Since the ponies are at the other end of the zoo and everyone started to visit the animals and attractions near the entrance we were almost alone. Sunny, being the hippo therapy champion that he is, excelled at riding the pony and got a lot of compliments for his good sitting posture. He could do several rounds because no one else was there and he was very happy about that.

Right next to the ponies were the goat. There was a time when Sunny was eager to pet the goat, he even went so far as to cuddle with them and lay his head on their backs or holding their cuddly tails. This time he was reluctant so we did not force him to get close to them.

We went to see the cows with their calves and the big pigs.

A highlight certainly was feeding the giraffes. We were given large tree branches with lots of leaves on them and got to stick them through the fences where the giraffes eat greedily. Sunny enjoyed this so much, he squeaked with delight and could not get enough. I mean, when do you have the chance of getting so close to those majestic, beautiful animals? When they stuck their mouths and noses through the fence you could even pet them if you were brave and quick enough. It surely was something really special.

(Credits)
On our way to the lower part of the zoo we watched the feeding of the vultures and also could peek inside the ice bear cave.

After all those exciting things we took a break and had dinner and beverages. Everything was free of charge and a band played while we sat outside and enjoyed our food. Sunny, always acting like a camel when it comes to drinking, downed all of our cups so we had to go and get more beverages for ourselves - and for him, of course.

After feeling rested and full we went on to see the feeding of the sea lions. This is something we rarely miss when we visit the zoo. Sunny loves the sea lions and is actually quite good at imitating their sounds. We love how he does that and ask him to do it very often. It is just so lovely!

We moved on to get a chance to pet a penguin! That was just cool. It felt very soft and fluffy (like a bird) and his wings were rather rough. Sunny even dared to come close and pet it, too.

Then we went into the aquarium. Sunny loves to watch the fish in their tanks and ran from one tank to the other. The bigger the fish are, the better. He found a huge tank with huge fish where he placed himself in front of and just enjoyed watching them.

After some time there we moved on, Sunny and my husband paying a visit to the crocodiles while I stood in line to pet a snake. Touching a snake is something that I always wanted to do so I grabbed the chance. It was a rather small colubrid (no huge constrictor snake, lol) and I was impressed at how muscular it felt and how it wrapped itself around my wrist. Its skin felt smooth and sleek. It was awesome and I am glad I took the time to wait for this experience.

On our way out of the aquarium we got the chance to pet a large koi carp which was very fascinating for Sunny. He pet it several times and could have done that for the rest of the night, I think.

The Dreamnight was slowly coming to a close and when it started to dawn we all went outside and watched a fire show. Sunny was mesmerised!

On our way out each child was given a small present.

In the forefront of the event I was wondering how Sunny would handle being up way past his usual bedtime but in the car on the drive home he was the one being the fittest of us three. He sat in his seat and was still fully awake and excited while my husband was snoring away next to me.

It was a very special event that we will surely not forget. It felt good to be surrounded by others who share our experiences and challenges. There we no stares, no awkward feelings. We were part of the group and not the outsiders. That felt really good. I also love how the staff at the zoo bent over backwards to give our kids such a special night that I am sure everyone enjoyed as much as we did.





Thursday, 12 June 2014

Teething problems: I thought we were done!

I should have known better than to announce in my last post that Sunny is fine - because this has changed for the worse in just a few days.

Since Sunday last week he has not been feeling too well. We had a heat wave here with temperatures up to almost 40 °C and I thought he was just feeling miserable because of the weather. On Monday it got worse. He was whiny, dispirited, grumpy, tired, and clingy the whole day. Monday was the hottest day here. He asked for his favourite drink (milk with water) frequently throughout the day but only drank one or two sips every time I gave him his bottle which is very unusual; he normally drinks large amounts of his milk drink. On Monday night when I wanted to brush his teeth he started crying and put his finger in his mouth. I looked inside with an electric torch and saw that his upper molars are coming through, both almost at the same time. The one on the left side already broke through a bit; the one on the right can already be seen shining through his gums.

Since then he has been refusing almost any food and, what is worse, also reduced drinking a lot. Which is not good at all in the middle of a heat wave. It got worse every day and yesterday it was so bad that I took him to see our paediatrician. He has so much trouble swallowing that I was sure he has strep. But he does not have any kind of infection. She checked his ears, lungs, stomach, throat - everything is fine. She even did a blood count to see if his infection markers were increased, but they were not even a bit elevated. However, yesterday he already showed signs of dehydration so I have to be careful and bribe him into drinking as much as I can.

However, he just is not his usual funny and happy self and that breaks my heart. I see how miserable he is all the time. It is a constant state he is in at the moment and I am so sorry for that. I wish I could help him bear the pain. So today I decided to have a dentist check his teeth to see if there was anything else apart from teething going on but she told me that from a dentist's point of view everything seems to be normal and that she cannot help us.

The only thing I can do is ease the pain with medication and hope that it will be over soon. Given that it already lasts for almost a week and the teeth still have a lot of work to do until they are finally all out does not make me really hopeful that it will be over soon. It is hard to see your child cry when he wants to eat or drink but is not able to because of the pain. That makes my maternal heart break over and over again. The nights are also horrible, he wakes up almost every hour and I am so very tired already.

I have never experienced anything like that in his history of teething and I never thought his last molars would bring that much pain to him. He always had painful times when his teeth came but it was never that bad. Well, you live and learn.


Tuesday, 3 June 2014

Coming home

It is difficult to pick up this blog where it was left after such a long absence. 

The truth is, I also did not really know what to write. I feel like being stuck in a tornado since last winter and do not know how to get out. But nobody wants to read my constant whining about that. So I was unsure whether I should even return or just give up blogging altogether. 

I was completely away from the screen which also means that I stopped reading blogs in the last months. It was all just too overwhelming for me and I needed to step back and try to balance my life (which I am still struggling with). I did not even check my e-mail account (the one that is connected to the blog). It was simply not possible for me. Sometimes I wonder whether I am (or was) on the verge of a burnout or/and depression but I know that these are severe diagnoses and I am very cautious using those terms.

However, I do want to connect again with my fellow bloggers and friends but I also need to concentrate on the most important ones for me. Otherwise it will quickly become too overwhelming again. 

Apart from my new job which is very fulfilling but also very exhausting, and caring for Sunny there are other issues in my private life that need my attention and draw a lot of energy out of me. I rarely get time to relax lately, with evenings filled with things that need to be done and that I did not manage to do during the day. The Pentecost holidays (2 weeks) are just around the corner, allowing for even less time than usually. I finally found two lovely and caring daytime nannies for Sunny but that means that I will have to take him there and pick him up again each day during the holidays when normally he rides the bus to school. 

But I need to stop here and now because I start whining again. Everbody’s life is busy, I know that. So I will just leave it at that and move on.


Here is what you probably want to know: Sunny is fine. 

Apart from the fact that we spent the weekend before last in the hospital due to another concussion he got while he bumped into another kid during recess and fell backwards, hitting the concrete hard with the back of his head. The teacher called me and told me about the accident while I was still at work. But he seemed to be doing okay apart from being more snuggly than usual and she told me she would monitor him closely and get back as soon as this would change. An hour later she called me again, telling me that he needs to be checked by a doctor because he was not being himself and that he was so tired. When I heard that I was already 80 % sure he had a concussion so I left work early and drove to his school to pick him up. On my way there she called me again and told me she just called an ambulance. She sounded nervous and worried and hung up the phone without any good-bye. That was when I got worried, too, and I drove as quickly as I could. When I arrived at the school it was time for all kids to go home so the whole schoolyard was full of buses – and the ambulance. On my arrival I was immediately guided into the schoolyard and as I got out of my car I already heard Sunny screaming inside the ambulance. I rushed to find him there with his sweet teacher who tried to console him. He was very scared and in bad shape. He did not feel well, I could tell that immediately. The teacher informed me that after our second phone call Sunny’s left arm suddenly went limp (fortunately it only lasted for a few minutes!) and she was afraid that he might have had another seizure so she called the ambulance. 

The paramedic told me that Sunny needs to be checked in the hospital and that the hospital staff already waited for us. My husband was away for work and so Sunny’s kind teacher offered to drive my car to the hospital (which is half an hour away) so that we would have clothes and everything with us for our hospital stay. She said she would somehow manage to get home again. It was the sweetest thing she could have done for us and yesterday I brought her a beautiful flower bouquet to thank her. The car was packed because we had planned on visiting my parents for the weekend. So we had everything we needed with us.

On our ride to the hospital Sunny fell asleep on my lap, then he startled and cried because he probably had a headache, then fell asleep again. When he heavily threw up on me it was clear that he had a concussion. 

The hospital staff knows us already and we were greeted by the nurses like old friends. The paediatric clinic had just moved to a new building so we got a brand new room with a gorgeous view which was the one thing that made it a bit bearable.


Luckily, no second seizure was diagnosed which was a huge relief for me. I am still always very worried about that. Our latest EEG in April remained unchanged and since Rolandic epilepsy usually does not go away before puberty I do not expect it to change in a positive way before Sunny gets older. The good news, however, is that it also did not get worse and if the next EEG will be the same our neurologist told us that one control EEG per year would be sufficient. And this is great news!


Another thing we accomplished in the week before we went to the hospital was that I finally managed to wean Sunny off his pacifier. I know, he is much too old to use a pacifier, but it was always so difficult to try and he only used it for falling asleep. I always went into his room when he was sound asleep and took it out of his mouth. Anyway, one day I just decided that it was finally time to get rid of it completely and so I just did not give it to him. When he started crying and demanded it I told him that his friend J from school was such a big boy and that he surely did not us a pacifier anymore. He seemed to understand because he stopped crying immediately and accepted that. It was such an easy transition, I never would have imagined that and I was so glad that it went that smoothly!




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.



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.