Tuesday, 1 September 2015

Small steps for Sunny, huge leaps for me

I finally carved out some time to write an update on how we are doing.

First of all, Sunny is doing so very well. He is such a happy camper. His speech is also improving and he is constantly trying to say new words. Since my last post in March he manages to say "Hahm" (which means "Hahn" and that is the German word for cock/rooster; however, he cannot pronounce the N yet) and he can say "gack gack" (imitating the sound the hens make). His favourite subject has been poultry for months now.

He is also trying to count but has a hard time pronouncing the different numbers. But he does not give up and is very much trying to make himself understood. He tries so say "rein" (into), he can clearly pronounce "Heim" (home) and he is trying to say "nein" (no) but since the N is so difficult for him it is not easy to understand it. But I see that he is trying to speak and pronounce new words tirelessly and that makes me so very proud and hopeful.

When it comes to me there have been major changes in my life. As I mentioned here and there within the last year or so I have had a hard time personally. The last years have been very difficult for me and I suffered a lot but did not tell anybody. On March 25, 2015 my husband and I finally decided to split up. It was a decision that had been long overdue. We mainly stayed together because of Sunny but now we finally felt that it was time to say good-bye to this frustrating situation. We are both too young to live a sad life and dissatisfying relationship. None of us made that decision easily and it was accompanied by many tears on both sides but it was the right thing to do. After two weeks of mourning and feeling like a complete failure for not being able to hold my family together and worrying how all of this would affect Sunny I started feeling better.

So far we are handling the situation very well. We still like each other, have a very peaceful and amicable relationship, and we still live together which might seem weird for outsiders but is the best for everyone involved at the moment. I have no pressure in finding a new and comfy place to live with Sunny, the husband gets to see Sunny as often as before and Sunny enjoys both of his parents for the time being. Of course this is not be a situation that we want to live in forever and I am planning to move out in the medium term. But right now it is still okay for all of us.

Moreover, I have already found a new love. It is such an uplifting feeling and it is balm for my bruised soul. It might seem very early for bystanders because the husband and I just broke up a few months ago but, truth be told, I have been feeling very, very lonely in our marriage and it was something that I longed for for years: to feel loved, cherished, understood, and valued again. These are all things that I did not experience in our marriage for a very long time. So to me it does not feel early at all but rather like it was high time for a change in this area of my life. Being neglected for so long makes you feel small and worthless and eats away at your self-confidence. It is not a good thing and I am glad that I found someone who loves me truly and deeply and for whom I feel the same. I never dreamed it would happen so quickly but I am so very glad that we met and we are both taking this very seriously.

It will certainly bring about new challenges since we have to join our families together: he has three kids that live with him and I have Sunny. It will be a new experience for me to deal with four kids instead of only one and there will surely be problematic situations arising but I am sure we will be able to handle them well. The kids like each other, we like each other's kids, the kids like us, so the main basics fit and we will cross the other bridges when we get to them.

It was very important for me that a new partner would accept Sunny for who he is and my new man decided very quickly after meeting Sunny for the first time that he would be willing and able to take over this special responsibility. When I see them interact I know it was the perfect choice that I made when I chose him.

I am very curious to see what the next months will bring for me. But for the first time in years I am confident that my future will be bright.

Wednesday, 18 March 2015

Just when you start giving up hope....

... your child might surprise you!

The past months have been quite uneventful (with regard to Sunny). There was not much to report. Apart from that I was very busy with my job and a lot of other stuff in my life that needed my attention.

Sunny has been developing slowly, as it has always been the case with him. Slowly but steadily he has been taking baby steps in all areas of his development - apart from his verbal speech.

We have not noticed any progress in his verbal speech for months - no, even for years. He has not added any new words or sounds to his verbal repertoire for a very, very long time. It was so long that I finally started to lose hope in his ability to form new sounds and learning to say more words. It was hard for me to see my hope vanish but you can only hope for so long when there is not the tinyest bit of progress. At one point you start to see things realistically.

That was until last week, Friday. We were having lunch and I had white mushrooms on my plate. Sunny looked at them, pointed at them and said "Ei". Ei is the German word for egg. Somehow the round head of the mushroom must have reminded him of an egg and so he proclaimed "Ei! Ei! Ei!" five or six times in a row. That was completely NEW!!! I nearly fell off my chair! I cheered on him, clapped my hands, and kissed him a dozen times because I was over the moon! But when I asked him to repeat the word he was unable to do it. Which is the sad thing about apraxia and having a hard time doing movements intentionally with your muscles while it is no problem to move them unintentionally. I thought that he would not be able to repeat it. This has happened before and so I did not think too much about it.

On Saturday I met his teacher and told her about the "Ei" incident. She was very happy to hear about it.

Today, when Sunny came home from school the teacher had left a message on our recording device with the following information:

When Sunny arrived at school he clearly and intentionally said "Eiii" a few times. Then he went over to the board where all the pictures of his classmates are and pointed to the picture of the only girl in his class - whose name is Eyleen! He wanted to say Eyleen! All his fellow classmates were very happy for him and applauded him. When I heard that my heart leapt with happiness.

But it still gets better! Currently, one subject in school is money and doing some shopping, mainly groceries and food. The kids learn what the various coins and banknotes look like, make roleplays in school where they buy and sell stuff from and to each other, and go to the supermarket once a week where they buy food for their breakfast in school on Friday. Today they were talking about the various supermarkets we have here and Sunny, lo and behold, said Aldi. ALDI! It is one of the supermarkets where they go to and it is such a difficult word! I almost could not believe it when I listened to the recording of his teacher. WOW! I am completely in awe and so proud of him!

When I talked to him about "Ei" and "Aldi" afterwards he startet saying "Eiii! Eiii!" over and over again and was beaming with pride. He even managed to say "Eiiim" which is a completely new combination of letters I have never heard before. 

I guess this just goes to show once again how you never know what will be coming next. Our children are lucky bags and can surprise us at any given time without the merest hint in advance. BAM. Just out of the blue.

I am one happy mother today and, more important, I found hope again. There is not much more I can ask for right now. I will enjoy this feeling as long as I can.

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.

 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.