Laughter and tears – part 2

By | March 10, 2015

The night of Friday, March 28, 2014. I am alone with the children since E, my wife, is travelling.  Not something she does often, I must add. Approximately 01.00 I’m awakened by LL, my daughter, who’s desperately looking for mum. Nothing I do can make her fall asleep. Really nothing – we’re talking an outburst in the higher levels on the Richter scale. Fortunately the home insurance is paid. The battle against sleep continues with full power until the morning. Nobody shall get any sleep! Luckily big sister can take care mostly of herself. LL eventually becomes more cooperative and allows herself to be prepared for kindergarten. Brushing teeth is not to think about however, or we risk another world war again. It becomes unusually quiet in the car on the way to kindergarten. Suddenly I understand why. LL is sleeping peacefully there in her car seat. I feel incredibly sorry to wake her. I carry her half asleep and explain the situation to the preschool staff. Good thing they’re understanding. LL will be sleeping there in quiet room. I myself have not the opportunity to rest, but a busy working day waiting and another day alone with the children.

This period was when it was at its worst. We had not yet received any medication for sleep problems, except Melatonin which alone only helps marginally. We had also not yet been granted any help or resources from the municipality. At my job, we had a business critical customer project with a very strict deadline, which required 100% commitment from me as the highest responsible person. Had I the summer of 2013 known about LL’s diagnosis, I’d probably dismissed the project. A failure was an unthinkable option. Despite the situation at home it was just to necessary to work late nights and weekends to complete the project. No rest at all except a couple of hours a day of sleeping. Had someone wanted to study Maslow’s hierarchy of needs, I would have probably been the most useful example.

But all is not entirely dark. Crises provide opportunities for change. You just have to be willing to change your mindset and habits.

Moon Sunrise

The bureaucracy of the Swedish welfare system should not be underestimated, but patience pays off. We took a first contact with the municipality in October 2013 to apply for assistance with LL. It proved to be a time-consuming process, both getting the application granted (supported by the LSS Act) and then for the municipality to find a place that could support us in taking care of LL that was not already full. Finally we were granted a place that could take care of LL two days per month. I went there with LL on a Friday afternoon in June for preparatory training. We stayed there one day and LL was at her best mood all the time. Three other girls there thought it was just great to get a “little sister” to play with, and the little sister thought it was just great to be played with. Briefly summarized, it was a big success! When E was there with LL next time the success continued. To “leave her child” was almost an unthinkable thought for E at first, but that changed. These two days per month have now become a very much needed time for rest for us and time to do things together with LLs bigger sister.

We also applied for financial support from The Swedish Social Insurance Agency (“Försäkringskassan”). There, I must say that they were faster than expected and that the process went smoothly. Surprisingly well I must say. After we later applied to the municipality for some more help a couple of hours a week it went much easier and faster, since LL was already “in their system”. We shall certainly be thankful of the welfare systems we have in Sweden and be careful about keeping them.

Medication has also made a big difference. April 2014 I think it was that we got Theralen/Alimemazine approved for LL. It is a medication that has sedative and tranquilizing properties. The effects were noticed already the first night. LL was much calmer when she woke up in the evening and early hours. Still sleep is a disaster for us all, but she sleeps a little longer and, above all, we avoid the explosive mood outbreaks in the middle of the night.

In the absence of other ways to communicate, forks, spoons, plates and mugs are still flying around LL as projectiles at our dinner table. However, it has recently become better when she learned to point. The verbal vocabulary consists of mama (mummy), wawaw (where pretty much can count on as “doggies”) and babab (a favorite figure from the “Babblers”). A smacking sound means yes. No is usually communicated by shaking the head or by an outbreak. It also seems that she understands very few words. Not being able to communicate is probably one of the worst handicaps, but there is some hope! The Habilitation staff explained to us that LL is very visual. Therefore, we decided to try a simplified form of sign language (in Swedish called TAKK). It actually worked better than my first expectations. We also got a lot of inspiration when we met another family with a child with the same syndrome that had come a long way with the sign language. LL is now with ease doing signs for mom, dad, sister, brushing teeth, eating food, iPad, shoes, trolls, ball and all kinds of animals. Moreover, she understands many more signs than she understands verbal words. The focus on TAKK is probably the best thing we have done so far. Language, be it verbally or through signs, is also very important to develop an understanding of the world. TAKK is actually good for any child and accelerates their understanding of language. It should be used in all preschools.

My job was of course something I also had to do something about. I’ve been trying to go down in working hours for a long time, but when we got the diagnosis for LL things had come to a head. Change is however easier said than done. Shortly before the LL was born, I started the job as country manager of an international IT services company. My area, Sweden, had since then been the fastest growing and most profitable area in the group. I had worked really hard also through engagement as president of one of Microsoft’s biggest user group in Sweden, speaking and presenting at technical events, arranging one of the world’s largest conferences in the business and four years in a row so far received the award “Microsoft Most Valuable Professional”. All this is of course related – success does not come by chance. The problem is that it is not easy to reduce working hours in such jobs. You can hire skilled employees, but the responsibility of the company ultimately rests on yourself and is nothing you can ever take time off from. Even if you formally resign as president, you will hardly avoid becoming an informal manager. Therefore, I took the only possible decision, to prioritize my family and completely leave my top job in the business. I now work a limited number of hours per week as a consultant and have phased out almost all my assignments and commitments. E, who constantly took the heaviest burden with LL, is as happy as I am at how much better everything has become. It is one of the best decisions I ever made.

Through the patient association and when I took the TAKK course, I have met many goodhearted people. I have met those who have a worse situation than us, much worse. It has taught me how much really little things can mean and be appreciated by those who are struggling. Getting a single morning’s sleep, or get some free hours just me and E together is extremely precious. I have also become better at rejoice in the small steps of progress that we are achieving and that other takes for granted, and care less about what we’re missing. Life is terribly unfair many times, but ultimately you decide yourself  how you look at your situation and what is happiness.

LL Smith Magenis 3

Our wonderful and lovely little LL teaches us new things every day. She offers both laughter and tears.