Our Life with Milly
Milly’s state of development
Milly can’t stand, can’t walk, can’t crawl. She can sit freely, but cannot support herself with her arms. She cannot sit up on her own or move from the seat to another position, so she is constantly dependent on help. She rolls to the side, but would have difficulty getting into the prone position. Just a year ago, she was able to take on weight for a while and walk a few steps with help. Unfortunately, she has gained a lot of weight and it is getting harder and harder for her to move. Nevertheless, Milly likes to move.
Despite her weak muscle tone she is by no means weak. She can generate a lot of strength when she has to and can turn back and forth in no time at all. Her strong defensive behaviour must always be taken into account during care. She can use her right arm better than her left, because it is weaker. This has improved a lot in recent months and we see much more often that she also uses her left hand when grabbing. The fine motor skills are very limited. She likes to pull our hair with her right hand and pinches and scratches our face. Not always out of spite, by the way. She probably perceives stroking as too weak, so she pulls to convey affection. However, she drops her joyous stance when it comes to personal hygiene. She then defends herself with all means at her disposal and pinches and pulls with full strength. I often can’t be angry with her about it. From an educational point of view I should intervene, but mostly I have to laugh. I still remember a Milly who hardly reacted to others, couldn’t lift up her arm, let alone reach my hair to pull it. Even if she had, she wouldn’t have had the strength. There are so many little things that I am very happy about, because Milly now does them naturally.
Of course Milly sits a lot. As a result, she constantly bends her legs, shortens her leg muscles and puts strain on her pelvis. So we put her down every now and then so that she can get into a different and more comfortable posture. Who of us could and wanted to sit all day long? In bed she is very active, plays with her animals, makes music with her rattles or babbles and “sings”. But we are so happy that she can sit. Sitting has enabled her to participate much more and is not to be taken for granted by many severely handicapped children.
Milly’s also mentally impaired. I can’t tell what her current developmental age is. A special education student once filled out a questionnaire with me. She was to write a kind of report for the university and I was to tell her in which areas of life Milly could do what. She often achieved values for children at the age of 18 months, sometimes more, sometimes less. That was a while ago, but her level of development could well be in this area.
Thanks to medication, Milly is able to perceive much more and began to understand things. How much, one cannot say. There are situations where I think she understands everything. She gets to know a lot and unfortunately children with mental disabilities, who also cannot communicate, are very underestimated. Milly can tell animals or things in the household apart. Of course it is difficult for her to explore her environment and, like a healthy child, to grasp or run and try things. We have to move her to the light switch and show her that something happens when you press on it. The development of causal connections is therefore time-consuming and must be repeated constantly. But sometimes I’m amazed at how quickly she understands something and can put it into practice. But she is also able to make fun of us, understands when misfortunes happen and then laughs at us mockingly. You have to consider that there are things she doesn’t want to be able to do. She has all-round care and we often cannot assess what can be expected of her. Then we spare her out of habit, where more demands would be called for. Over the next few years, the focus will therefore increasingly be on promoting independence.
Unfortunately, Milly has no understanding of hazards either. When she rolls back and forth in bed washing, she doesn’t notice that she might fall out in the heat of the moment. When sitting in a wheelchair, we have to make sure that she is not standing near the edge of a table, etc. If she is excited and impatient, she throws herself forward with force and has already bumped her head badly. So we have to keep an eye on everything around her and always think a few steps ahead.
Ground Control to Milly – Language and Communication
If you were to measure a person’s value by their nickname, Milly would be very popular. Already before her birth I called her Milly, Milly mouse and little snail. I didn’t know then that she was really one. In addition to Milly mouse (grandma), Mouse bear (aunt Ela, mum), Snail mouse (mum), Emilyoushka (aunt Susi), little Milly (aunt Corina), little Emilia (aunt Ela), Sugar snail (mum), Sugar cheek (aunt Ela) … there are also some other affectionate names that underline the “millyocentric world view” of the family.
But there are also other names: Millzilla (dad; a composition of Milly and Godzilla), Motzilla (dad; a composition of grouse and Godzilla), Millynator (mum and dad; a terminator only in blonde with chubby cheeks) or Miss Motzi, Drama Queen, Whiny Louise, Nagging Louise, Ol’ Mussel (mum; is certainly all self-explanatory).
Milly can’t speak, but he has a lot to say! She babbles, sometimes says “Mummy”, “Daddy” and “Granny”. But if she wants something or something doesn’t suit her, we usually hear a more or less energetic “EHHH”. This is often very exhausting and her dad says resignedly, “she says it again in Ehh major”. We are forced to really understand our child, i.e. to put ourselves in Milly’s place and feel what she wants to tell us. If there’s anything bothering me, it’s that Milly can speak. Just when we see that something is wrong, I panic quickly. I’m afraid she might be in pain and I can’t help her. We’ve had experiences where Milly would whine terribly and then cry, scream and be uncomfortable. My mother had to leave the room because she couldn’t stand it any longer. My sister was as white as chalk with horror and wanted to call the emergency doctor. We tried everything: sitting, lying, playing, reading, singing, new diapers, eating, drinking … The answer to the riddle: Milly wanted a Bauer yoghurt (a particular brand in Germany). So all the excitement for nothing. Her famous “Ehhs” are sometimes mentally very stressful and put us under pressure. We have to deal with it consciously, because a strong Millzilla “Ehh” arrives like a reproach. But she has no other way to express herself.
In kindergarten we work with augmentative and alternative communication (“AAC”). Milly was granted two “step by steps”, small devices with large and easy to press buttons. She learns to communicate with them. First she had to learn that she can trigger a reaction. Meanwhile, she knows that she has to press it if she wants to eat more. This procedure is very cumbersome. Simply showing pictures does not help, because she does not perceive like a healthy child. She not only needs to understand the word acoustically, but also the word content. Cognitive abilities naturally play their part here. Sometimes gestures are used, but that is easier said than done. The easiest way is when Milly doesn’t want something. She then turns her head away, takes the object and throws it away or fends it off with her arm. But sometimes she also shakes her head. When she agrees, she sometimes makes a cheerful, relief-sounding noise that sounds something like: Oh man, finally, they got it! A gesture that she used early on is her way of showing that she is tired. Then she holds her forearm – supported with the other hand – in front of her closed eyes.
Milly doesn’t point the finger at anything, but the eyes. When I asked her once on a trial basis where the beaver is in the book, she only looked into the book. I asked again and again and she became impatient and poked energetically with her nose at the beaver. I was amazed, I didn’t realize that she could really keep the animals apart and point at them. So Milly communicates with full physical commitment and it is a challenge to empathise with her and try to communicate. If a child can only say “yes” or “no” or can only shake his head or nod: that alone is pure luxury!
I am also very happy that Milly can whine and cry to express that she is suffering or something is wrong. Unfortunately this is not a given.
Milly is a very cheerful and open-minded girl with whom you can steal horses. We can go anywhere with her and she likes to meet new people. But lately we have to be careful not to overwhelm her with new situations. She perceives more and of course has to deal with these stimuli first.
Milly likes to play, just like any healthy child. But she doesn’t have the same possibilities, so 99% of all commercially available toys are not suitable for her. Either she could use it motorically, but doesn’t understand it cognitively, or vice versa, or both. This presents friends and family with great challenges when it comes to offering her a gift.
The muscle weakness could lead to her not being able to do much with soft materials or not perceiving them like a healthy person. Therefore she rarely plays with soft toys. She has some little stuffed animals with which she also plays in bed. But they are not her favourites. Milly likes to play with solid materials, e.g. building blocks or large puzzle pieces of any kind. The pieces must not be too small. She likes to look at them, apply them and check the material, the colour, the shape.
Milly is currently learning to work with the slip ring. Motorically it is now reasonably possible for her to put a ring on the ring. If you are limited by fine motor skills, it is a difficult task. But the constant practice also promotes their cognitive abilities. But she doesn’t have much fun with it yet. Building towers is therefore not her thing, to knock them over all the more.
Milly can’t play on a conventional playground. Slides, swings, climbing, seesaws are not possible. If we are outdoors, we have to walk about 30 minutes to get to a playground with a nest swing. Milly loves to swing for her life and can relax totally in a nest swing. There are other swings for physically handicapped children, but you have to look for them. Including playgrounds are unfortunately scarce in Germany. These swings could also be used by healthy children with a lot of joy and fun.
Milly can live out her creative streak in the kindergarten. She paints there with finger colours, tinkers or kneads. This is a lot of fun for her and of course also promotes her motor and cognitive development.
She is often unable to use activity toys with buttons to press on them, as her left hand would be necessary to hold them and she does not have enough strength in her left arm. However, there are a few exceptions, such as Milly’s petrol pump, which she likes to play with so much. Unfortunately, these are no longer available in stores, we had to buy one on Ebay because her old petrol pump has already given up. What’s so great about it? It’s not too long and not too high, Milly can take it well with one hand. It’s got big buttons, no perfect fine motor skills needed to press. It flashes and plays several great melodies. And not just a few seconds, but one or two minutes.
Milly is a real bookworm. Even before she was born, I had set up a respectable little library for her. For me as a bibliophile mum, it was terrible that I couldn’t read anything to her for so long. That changed after the medication was adjusted. For two to three years, Milly has been enjoying books. At first she loves to look inside, for a while she just wanted to turn the pages, because she was now able to do this motorically. So we mainly bought cardboard picture books, because she still has difficulties with thin pages today. She now loves not only the colourful pictures, but also the stories, especially when they rhyme. With some lines she laughs again and again. We can’t say whether she understands them. But the content must not be too long, then her ability to focus diminishes.
Thank You for the Music
Music is Milly’s great passion! Small, handy musical instruments of all kinds are just right for her, because Milly has rhythm in her blood. She can clap along to the beat of a song and if you have to distract her, it’s best to do it with a little song on your lips. Milly consistently demands her songs. She then pushes her hand against our mouth. That means: Sing now! If she doesn’t like the song, she’ll hit your mouth again. During dinner her own mouth remains demonstratively closed and she refuses to open it and eat until her Music Box (Mum) starts a song. She likes it better when you sing to her than when a CD is playing in the background. Milly “sings” herself, of course. When she’s lying in bed playing with her rattles, we hear her sing a melody on the baby monitor every now and then. Then I wonder which song she is singing right now.
Milly also likes to pluck the strings of her occupational therapist’s guitar. And when Markus plays the guitar to her, she is his biggest fan. It’s a pity that Milly will never play her own instrument. Which one would she choose?
As far as styles are concerned, Milly is quite open-minded. She likes rock, pop, techno, pop, classical and of course children’s songs. When we’re in the car, she has a lot of fun when we put in a CD. Last year we needed a varied music programme for the long journeys on holiday. Markus and I searched the internet for songs she didn’t know yet and put together a CD (“Millys Mucke”) with TV song classics. The CD is not only great for Milly. Also all “big children” on board always sing along enthusiastically.
But songs and melodies are also important to calm or distract Milly. So music has a very important place in her life. We always jokingly say that we will send her to the Conservatory, if there is an institution with an opportunity for inclusion by then.
Milly’s a good eater. Since she has been eating solid food, we had to pay attention to soft foods. Meanwhile, this is becoming less and less important. She is currently learning to drink from a cup. She mainly drinks from a bottle with a teat, but she does this on her own. When drinking from the cup she often swallows herself. Therefore, we and her occupational therapist try to thicken diluted juices with locust bean gum and thus practice drinking from the cup.
Milly can bite off bread, if I pass it to her. She could take it herself. But most of the time she would throw it down. So we give her the food. Often I cut the bread into pieces, skewer it on the fork and lay it down for her. She can take it herself and then put it down again (instead of throwing it through the room like before). In kindergarten, she is often looked after by an occupational therapist during meals. Milly has to repeat processes very often until she has mastered them.
For about a year now, Milly’s weight gain has been causing us great concern. I reproached myself for not eating healthy enough. But there are no sweet drinks, only water and fennel tea. Milly doesn’t nibble at anything. We tried to avoid carbohydrates wherever possible, to limit the portions and to give lots of fruit and vegetables. Fortunately, Milly likes vegetables very much. But she also has to learn to eat slowly. We think that certain metabolic processes do not work as they should. Then the lack of exercise. It could also be possible that the feeling of hunger arrives late due to the delayed transmission of stimuli. It is also not clear how much the medication contributes to this.
When we registered with our BPAN Facebook group after the diagnosis discussion, we were astonished: very many affected girls were also little dumplings like Milly. The weight problem is probably disease-specific, at least for the children who can’t move like Milly. Some children are less badly affected. It reassured us to know that we didn’t do anything wrong. Yet the question is what Milly is allowed to eat. I recently gave her a lot of raw food because she can chew it well now. In kindergarten, Milly’s educator and occupational therapist also pay attention to what she eats.
Nevertheless, I am glad that Milly can eat solid food at all. Of course, this has disadvantages in terms of weight. But we have also seen toddlers with tube feeding and children who still have to feed on porridge at their age. We are very happy that at least in this respect she is able to develop in an almost age-appropriate way.
Milly is given two antiepileptics in the morning and two in the evening in the form of juices. She tolerates them well, although we think that the medication often makes her tired. It was the drugs that enabled Milly to reach the stage of development she is at today. But there is another reason why I mention the meds here.
You can’t just give drugs to a mentally handicapped child. In the beginning the administration of medication was very problematic. Milly had to take the meds to develop, but didn’t want to. Especially since the first drug, Keppra, tastes terrible even with all thinkable additives. You simply taste it out of everything. Milly refused, cried, screamed, threw up. When we finally had administered a drug, she vomited at the latest on the second and everything was out. We were desperate and had only found a solution after long experimentation. We give the first juice with fruit puree and the second with some fruit puree in yoghurt. With this combination she now takes the meds regularly.
However, there are times when she refuses to take the meds for a week or two. This is the case, for example, with illness and discomfort. We also thought about a change of medication. But changing drugs is enormously time-consuming, and all epilepsy drugs have side effects. Milly started with constipation, for example. Whether or not the new drug will work in the end would still have to be checked. Milly would have to endure a number of sleep deprivation EEGs again. We didn’t want that, and fortunately she took the meds regularly again after every difficult period. Milly should finally have a quiet childhood and only be “tortured” where absolutely necessary. Every half year there is a control EEG and that is enough for us.
But quickly! – A kingdom for more patience
Unfortunately, patience is not Milly’s strength at all. This can be nerve-wracking, especially on the road. If we want to eat in a restaurant, the waiters have to hurry to bring bread to bridge the gap, immediately and without culpable hesitation! Milly sees the dishes and wants something to eat right away. So sometimes one of us takes her for a walk while the other places the order. She can scream and roar in such rage that it’s hard to calm her down and she can’t eat anything any more. We are tense in doctors’ offices and clinics because waiting times are often so long and we have to see how we keep Milly busy. She can’t play like a healthy child, is too excited to play in a new environment. Talking good doesn’t help. Often we take her for a walk through the corridors. She must not get excited, because then examinations are no longer possible or not meaningful, such as hearing tests. When registering, I always point out the problem and say directly that you have to reckon with the little one yelling everything to bits and pieces. I would like to see more consideration given to the needs of severely handicapped children and for them to be given preferential treatment. This could save doctors, therapists, Milly, us and last but not least all other waiting people a lot of stress. It is a permanent exercise not to put yourself under pressure when Milly is impatient and whining. To “train” with Milly’s patience is almost impossible. We then calm her down, sing and try to distract her.
And no, it has nothing to do with education. We try to educate Milly by putting her on the floor and only bringing her back to the table when she’s quiet. But this presupposes that we are sure that the whining has no legitimate reason. No problem with a healthy child. That can tell the reason all by itself at some point. But we can’t ask Milly and she can’t tell us anything else. What would you do if all your vocabulary was just an “ehhh” and you wanted to share something but nobody understood you? That’s right, you get angry and share it as much as you can. But you could at least point your finger at something, use gestures, write something down. Milly can’t do that. Keeping Milly calm and balanced is often nothing for sissies.
In the Rehakids forum (an online exchange forum for relatives of handicapped children), a signature appears under each post. My signature includes Milly’s age and diagnoses. The last one I list is a pronounced SCSWS (Smooch, Cuddle, Snuggle and Whine Syndrome). I don’t have a healthy child, but my life has filled a big heart’s desire: I have a real sweet cuddly mouse. And cuddling with Milly is soooo beautiful. We always call it “cuddly duddle”. We could snuggle with her from the beginning. But it wasn’t until she had adjusted her medication that she was able to really perceive us as parents and to claim her cuddle units. At some point she stretched out her arms to us and wanted us to come and cuddle. While eating at the table Markus and I sit to the right and left of Milly, Milly in the therapy chair at the top. When she wants to cuddle, she adores us, stretches out her arms to one of us and then the therapy chair like a ping-pong ball always moves from right to left, depending on who Milly wants to pick up her cuddling units from. Lately, however, she literally seizes the opportunity to pull her dad by the ear or her mum by the hair. The ability to build a very intimate relationship with us and others is probably her greatest strength.
Milly had a bad sleep-through disorder after adjusting the medication. But that improved again. For months, she fell asleep without any problems. There were, however, times when she was awake at night for a few days and weeks. The last prolonged waking phase was from autumn 2016 to early 2017. Milly woke up almost every night. Since Markus needs sleep to be fit for work, Milly is looked after by me during the night. I have created four categories for myself about how bad a night can get:
- Milly is awake, but only wants to play in bed. That can take 30 – 60 minutes, then she falls asleep again. I can lie down and snooze until she sleeps. But sometimes I have to turn on the light.
- Milly doesn’t want to lie in bed anymore, I have to get her out of bed. She then plays brightly awake and highly concentrated for about 30 – 45 minutes on her mat in the living room.
- Milly has had enough on the mat now, but is not tired yet. I get her on the sofa and read to her. After another 15 – 30 min she gets tired.
- If I’m lucky I can put her to bed and she finally falls asleep. But in autumn she couldn’t sleep in her bed any more. So I stayed with her on the sofa and lay down with her to sleep. It also happens that she only plays in bed. Then she gets tired, dozes off, wakes up again. This eternal back and forth can also last three to four hours. Also in this case, I have to lie down with her so that she finds sleep. The sleep problem was also a reason why we applied for a very large nursing bed (1m x 2m).
But with all the activity at night, these are the best moments, because we lie very close together and Milly wants to cuddle a lot. I then hold her little hands and she clasps my hand tightly. She laughs contentedly and squeaks with joy. Only when she is asleep I might sleep as well, but now I am wide awake. When Milly wakes up at 4.30 a.m., I don’t have to lie down at all anymore and am exhausted during the day. But so is Milly. After such a night she is not as efficient as usual.
For Markus and me it’s like vacation when Milly suddenly sleeps through again after days and weeks of sleep disturbances. The first days I wake up automatically at night. It then needs some time to calm down again.
Milly and her dummy – a love story
Without her dummy Milly can’t make it. She doesn’t always need it, she can even do without a dummy for a long time, and at night she even pulls it out. But as soon as she gets restless and whines, we unfortunately have to resort to it. Milly bit her forearm once in a while, but without leaving any wounds. I think without her dummy she would really bite her arm to relieve tension. I prefer the dummy more. It was also one of the reasons why we applied for a wheelchair for Milly. People were already talking to us about it: such a big child and still with a pacifier. One should immediately see that something is wrong with the child and the soother therefore has its right to exist. It really isn’t age-appropriate, but she needs it to calm her down. Without the dummy we don’t leave the house, and we always have a spare dummy. We don’t know how we manage to get her to get rid of it. It is true love, but hopefully it will pass away soon.
Milly’s still wearing diapers. We recently started toilet training. It’s a little bit difficult, because it’s physically easier for us to change Milly’s diapers while lying down. One of us has to hold her for toilet training, because Milly can’t stand. The other one pulls her diaper pants down at the same time or up again after the training. To put on and take off the diaper while standing would be much too expensive. Therefore we also buy expensive diaper pants, which we have to pay ourselves. We hope that at some point we will be successful, because being able to control the bodily functions herself would be an important step for Milly towards a self-determined life. But how Milly can make us understand that she has to go to the toilet will be the next big hurdle.
In this context, I would like to address the issue of personal hygiene on the road. There are toilets for the disabled everywhere. But they are of absolutely no use to people in need of the heaviest care. These WCs are something for the fit handicapped who can drive into the toilet themselves with a wheelchair, get up themselves with the help of the holder and go to the toilet. But what use is that to a person who can’t do all that? People in need of care need more. Firstly, space, because often caring relatives still have to accompany them to the toilet. Then a bed would be necessary to change the diaper. There are beds that can be folded down, so they would hardly take up any space. Such a bed would cost about 300€. Inclusion is discussed all over the country. This could be a start, because also people in need of care would like to travel.
Now you ask yourselves perhaps, how multiply severely handicapped and/or humans in need of heaviest care are cared for on journeys. There are the following solutions:
- stay at home
- the child is diapered on the floor of the disabled WC
- the child is diapered in the woods
- the child is diapered in the trunk or in the back seat of the car
- a cot is taken along
Last year we took the bathing lounger with us. But there was little space on the toilet and it was too uncomfortable for Milly to change. This year we also changed diapers in the back seat of our van. The trunk would be better, but we can’t unpack it on the parking lot as full as it is. In case of bad weather we had to go to the restroom. We were very lucky and could change Milly on a stable changing table. We can no longer put her on a folding baby changing station. I have no idea what we do when she gets bigger and no suitable solutions are available.
I find it discriminatory that we expect severely disabled people to have to be cared for on a disgusting toilet floor. Even with an underlay, this is inhumane and disgusting.
Heidelberg, July 2017
Here you will find news about Milly’s development and illness.