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mandag den 26. december 2011

Arthur sover ikke - Arthur does not sleep

Arthur har aldrig sovet godt. 
Da han var halvandet, kravlede han ud over tremmesengen og fra da af, har han ikke kunne finde ro om natten.

I lange perioder, blev Arthur ved med at stå op, når vi puttede ham. Vi fulgte ham gang på gang tilbage i seng. Dette kunne fortsætte i timevis. Nogle gange holdt vi ham i sengen, eller lagde os sammen med ham, så han kunne finde fysisk ro. I en periode havde vi sågar en sele i hans seng, som vi så tog af ham, når han var faldet i søvn. Han elskede denne sele og bad selv om at få den på. Vi erstattede selen med en kugledyne (http://www.protac.dk/Default.aspx?ID=5), men den virkede aldrig rigtig. I perioder faldt Arthur først i søvn efter kl. 24.00 - Han var selvfølgelig alt for træt dagen efter og kunne ikke holde til sin dag i vuggestuen (nu Børnhaven).
I sommer spurgte vi så Arthurs læge til råds. Han ordinerede Melatonin til Arthur. I løbet af få dage, var vores aftener ændrede til det bedre. Arthur faldt i søvn en time efter han havde fået sin pille - og sov! 
Dette varede desværre ikke ret længe. Kort efter begyndte Arthur at vågne om natten, hvilket han fortsat gør. Arthur vågner mellem kl. 01.00 og 03.30 og er vågen i 2-5 timer. Han vil virkelig gerne sove, men kan ikke finde ro. Han mosler rundt, men vil hverken lege eller stå op - Han kan ganske simpelt bare ikke falde i søvn.
Om et par måneder skal Arthur derfor søvnudredes - Vi har derfor udfyldt et søvnskema til Riget. I første omgang skal han overnatte på videostue, dernæst skal han måske på søvnlaboratorium i Glostrup - Jeg håber så meget nogen/noget kan hjælpe ham og dermed os. 

26.12.11
Arthur does not sleep

Arthur never slept well. When he turned a year and a half, he figured out how to get out of the crib and from that time, he has not been able to find rest at night.

For long stretches of time, Arthur kept getting out of bed after we had tucked him in. Time after time, we escorted him back to bed. It would go on for hours. Sometimes, we would hold him down in bed or lay down with him and he would be physically calm. For a while, we even had a rein in his bed, which we removed once he has fallen asleep.  He loved the rein, and asked to have it put on him. We tried to replace the rein with a ball duvet, but it never really has any effect. Sometimes, Arthur would not be asleep until midnight, which of course made for bad days in daycare because he was tired.

This summer, we asked our doctor for advice. Ha gave Arthur Melatonin. Within a few days, our nights got better. Arthur would fall asleep an hour after getting the pill and stay asleep until morning. Unfortunately, this did not last. Shortly after, Arthur began to wake in the middle of the night – he still does. He wakes between one and three thirty and is awake for two to five hours. He really wants to sleep but cannot find rest. He is restless and moves about but does not want to get out of bed or play. He just cannot get back to sleep.

As a result, Arthur’s sleep will be tested by a hospital in a few months. We have filled out a sleep schedule and first of he has to spend the night in a room with video surveillance. Afterwards, he might have to sleep over in a sleep laboratory as well. I really hope that some of this will end up helping him – and us. 

søndag den 25. december 2011

Mollie er helt rask :) - Mollie does'nt have Hyperekplexia

Så fik vi svar på prøverne - Arthurs lillesøster er helt rask - Hun har ikke Startle Disease, men er bærer ligesom jeg selv er...

Mollie does'nt have Hyperekplexia
So we got the testresults from Mollies bloodsamples - Arthur's little sister is completely healthy - She does'nt have Startle Disease, but is a carrier like myself ...

torsdag den 1. december 2011

Arthur er blevet storebror - Arthur is a bigbrother

Kl. 06.10 den 29. november, blev Arthurs lillesøster, Mollie, født.
Som aftalt, tog jordemoderen en blodprøve fra Mollies navlestreng til genetisk udredning i Wales.
Kort efter Mollies fødsel, kom en børnelæge ind på stuen. Han undersøgte hende og vurderede at hun havde det godt. Han så ingen tegn på Startle Disease (ikke at jeg tror, han vidste hvad han skulle se efter). Alligevel blev Mollie indlagt på neonatalafdeling (?!?). Jesper fulgte med Mollie og jeg lå i mange timer og ventede på at se dem. Da jeg endelig kom over på Mollies afdeling, sov de begge. En sygeplejerske kom ind for at tage imod mig. Jeg spurgte ind til hvorfor Mollie var blevet indlagt og ikke måtte være på barselsafsnittet og hun forklarede, at vi afventede en læge, der kunne undersøge Mollie med henblik på, at finde ud af, om hun havde Startle Disease. Jeg forklarede, at det kun var Arthurs læge, der kunne give et skøn på dette og at vi måtte afvente svar på blodprøverne. Alligevel skulle hun blive.
Vi ventede hele dagen forgæves og da kl. var 17.30 fortalte jeg sygeplejerskerne, at lægen måtte være gået hjem. Jeg ringede til hans sekretær, men ingen tog telefonen.
Kort efter fik jeg Mollie udskrevet og fik hende med hen på barselsafsnittet.

Næste morgen ringede jeg igen til Arthurs læge, denne gang tog sekretæren telefonen og forsikrede mig om, at Arthurs læge ville komme op på afdelingen og undersøge Mollie i løbet af et par timer. 
Kort før undersøgelsen, ringede Jespers bror for at høre om, han måtte komme forbi og se Mollie. Jeg ventede på ham på hospitalsgangen sammen med Mollie. Jeg ville så gerne spørge, om han ville gå med ind til lægen, når hun skulle undersøges, men jeg turde ikke. Jeg var så bange for, at lægen ville undersøge Mollie og konkludere, at hun også havde Startle Disease mens jeg stod dér helt alene med hende. Samtidig ville jeg ikke bede Jespers bror om at vente sammen med mig. Jeg var bange for... at spilde hans tid?

Kl. 12 kom lægen. En helt skare af børnelæger og sygeplejersker gik med ind på stuen, nysgerrige så de til, hvordan han undersøgte Mollie nøje. Lægen tappede Mollie på panden og på næsen. Han trykkede hende under fødderne, bevægede hendes ben og arme. Han klappede tæt ved hendes øre, lyden føltes utrolig høj og gennemtrængende... Det tog maksimalt 10 minutter, så smilede han til mig og sagde, at han ikke så nogle tegn på Startle Disease. 
- - -
Fra Mollie blev født, føltes hun anderledes end Arthur. Hendes krop virkede afslappet og rolig. I timerne på hospitalet, fulgte jeg hendes bevægelser nøje. Hvert et lille ryk eller sitren gjorde mig frygtelig bange. Jeg googlede alle baby-reflekser og læste op på Mororefleksen. Hendes arme der viftende siterede, var det bare den? Eller kunne hun have Startle Disease? Hun rystede ikke som Arthur, slet ikke...
Vores forældre kom og besøgte os på hospitalet, alle kommenterede de på Mollies rolige krop. Gættede på at hun var rask... 

1.12.11
Arthur is a big brother

At 6.10 in the morning of November 29th Arthur’s baby sister Mollie was born.
As we had agreed, the midwife took a blood sample from Mollies umbilical cord for genetic diagnosis in Wales. Shortly after Mollie’s birth, a doctor came to our ward to examine her and check that she was doing fine.  He saw no signs of Startle Disease, but I doubt that he has much of an idea of what he was looking for. Either way, Mollie was admitted to the neonatal ward. Jesper came with her and I had to wait hours to see them. When I finally got to her ward, both Mollie and Jesper were sleeping. A nurse came to greet me and I asked her why Mollie had to be at the neonatal ward. She explained that we had to wait for a doctor to examine Mollie in order to find out if she had Startle Disease. I explained that only Arthur’s doctor would be able to make that assessment but Mollie still had to stay.
We waited all day and at haft past five in the afternoon, I told the nurses that the doctor must have left for the day. I called his secretary but no one answered so I discharged Mollie and brought her back to the maternity ward with me.

The next morning I called Arthurs doctor. This time, the secretary promised that we would some to the ward and examine Mollie within a few hours. Shortly before the examination, Jesper’s brother called to ask if he could meet his new niece. I waited for him in the hospital hallway with Mollie. I really wanted to ask him to stay with us when the doctor came but I was afraid. I was so scared that the doctor would examine Mollie and say that she also has Startle Disease while I was standing there all alone with her. At the same time I did not want to ask Jesper’s brother to wait with me – I guess I, irrationally, did not want to waste his time.

The doctor came at noon. A crowd of doctors and nurses came into the room and curiously looked on as he examined Mollie. He tapped on the forehead and by the nose. He pressed under her feet and moved her arms and legs. He clapped close by her ear, the sound seeming very loud and piercing. It all lasted less than ten minutes and then he smiled at me and told me he saw to signs of Startle Disease.

From the moment she was born, Mollie was different from Arthur. Her body seemed relaxed and calm. During the hours at the hospital, I closely followed her moves. Every little jerk or tremble scared me. I googled every baby reflex and read about the Moto-reflex, trying to determine if her quivering arms could be that or Startle Disease. She did not have the same shakes as her brother at all.
Our parent came to visit at the hospital. They all commented on Mollies calm body and guessed that she was not ill.




mandag den 7. november 2011

Møde med den kommende børnehave - Meeting at the future day care center

Det står os helt klart - Læssøesgårdens Børnehave er en kulturinstitution. Og! De er ikke til at messe med! 

Jesper og jeg kom som aftalt til møde i Børnehaven et par måneder før Arthur skulle begynde. Jesper og jeg havde printet udtalelse fra vuggestuen, Riget og Ergo- og fysioterapeuterne ud. Derudover havde jeg taget et portrætbillede med af Arthur (så de død og pine ikke tror, han ser underlig ud - - - Ja, det er altså vigtigt for mig).

Til mødet deltog afgående leder, souschef, ny leder og pædagog.
Jeg startede med at fortælle kort om Arthurs sygdomsforløb, Jesper supplerede op med at fortælle hvor normal Arthur er!

De gjorde det klart, at de ikke ønskede at læse vores papirer på nuværende tidspunkt, men ville lægge ud med, at lære Arthur at kende. Til gengæld blev de rigtig glade for det billede jeg havde med. 

Vi blev præsenteret for en masse (underlige) regler og afslutningsvis, fik vi at vide, at vi da bare var "så søde..."

7.11.11
Meeting at the future day care center 

We are acutely aware that Arthur’s new day care center is a special place. In addition, not one that you should mess with.
Jesper and I had made an appointment with the staff a few months before Arthur was to attend. We had printed the reports from his nursery, the hospital and his therapists. In addition, I brought a picture of him – it is important to me that people know that he does not in any way look like anything more than a normal boy.

We met with the managers and a pedagogue. I started by going through Arthur’s course of illness, and Jesper supplemented by telling how normal Arthur is.
They told us that they did not want to read the papers yet – they wished to get to know Arthur first. However, they really liked the picture that I brought.
We were introduced to lots of rules and subsequently they told us, that we seemed nice.    


søndag den 23. oktober 2011

Endelig den rigtige børnehaveplads til Arthur - Finally, the right day care for Arthur


Så var der endeligt godt nyt!
Arthur går jo i en helt almindelig vuggestue selvom han har Startle Disease. Han har siden juli haft 6 støttetimer om ugen, som pædagogerne bruger til at gå fra med ham, når han bliver for overstimuleret af at være i børnegruppen.

Da børnehavegruppen i Arthurs institution ikke var egnet til ham, havde vi kontaktet den specialpædagogiske konsulent på Nørrebro for at få hjælp til at finde den rette børnehave til Arthur. Den specialpædagogiske konsulent indsamlede viden og observationer fra hospitalet, ergoterapeuten, fysioterapeuten, sundhedsplejersken og selvfølgelig vuggestuen. Hun ansøgte pladsanvisningen om en basisplads, altså en plads til børn med særlige behov. (Der findes to slags i København- dem for børn med fysisk/psykisk funktionsnedsættelse og dem for børn med sociale vanskeligheder -Arthur hører i sidste gruppe).
Desværre fik vi afslag på ansøgningen - med den kommentar, at han skulle i en lille alm. børnehave med ro og struktur. 


Vi besøgte fire forskellige institutioner på Nørrebro, efter anvisning fra den specialpædagogiske konsulent. Ingen af de fire institutioner var gode til Arthur. Enten kunne de ikke rumme ham, eller også havde de ikke plads - Og sådan gik der et halvt år...

Til sidst ringede jeg til pladsanvisningen og spurgte hvad vi skulle gøre - Jeg fortalte, at deres afslag jo ikke var berettiget, når de ikke havde den plads de selv anbefalede - De opfordrede mig til at klage over afgørelsen, hvilket jeg gjorde.

Nu har vi så endelig fået plads - Oven i købet en basisplads lige rundt om hjørnet (der findes omkring 15 pladser i hele kommunen og den er jo fysisk stor, når man er cyklist).

Institutionen hedder Læssøesgården og skulle være virkelig god. Børnehavegruppen har valgt, at blande alle børn (basis og normale) og køre med højere normering på hele gruppen, således at der ikke er en decideret specialgruppe. Det er jo perfekt for Arthur, da vi ønsker han får så normal en hverdag som muligt.

Vi er så glade og lettede, men også ærgerlige over hvor hårdt vi har måttet kæmpe - Tænk på dem der ikke har de resurser vi har...

Den 9/1 skal Arthur begynde i børnehave! Hvor bliver han dog bare stor!

23.10.11
Finally, the right day care for Arthur

Finally some good news. Arthur is in a regular nursery in spite of him having Startle Disease. Since July, he has had six hours of extra support a week, which the pedagogues use to take him aside when he is too over stimulated from being with the group.

We have been in contact with the local pedagogic consultant to find a day care center that would fit Arthur’s needs. She gathered knowledge and observations from the hospital, the occupational therapist, the psychical therapist, the health visitor and the nursery. She applied for Arthur to have a place in a day care center for children with special needs. In Copenhagen, there are two types – one for children with psychical disabilities and one for children with social disabilities. Arthur would be part of the latter group.
Unfortunately, our application was turned down with a comment that Arthur should be in a regular day care center with tranquility and structure. 

We visited four different day care centers in our neighborhood. Either they were not fit for Arthur’s needs or they did not have room for a new child. This process took six months.

Eventually, I called the office assigning daycare and told them that they should not turn down our application when they could provide no suitable alternative. They recommended that we appealed their initial ruling. I did that.

Now, we finally have a day care center for Arthur. It is a special needs place right around the corner from our apartment and they have a great reputation. They have chosen to mix the children so that Arthur will be in a group with children both with and without disabilities and with more staff than a regular day care center. This is just perfect for Arthur, as we want him to have as normal a life as possible.
 
We are relieved and happy but also a bit frustrated over the struggle we had to go through to get here. Think of those with less surplus energy than us who will have to settle for less.

By January, Arthur will be in day care. My, he is getting big.

tirsdag den 23. august 2011

Sommerfest i vuggestuen - Summer party at the nursery

En god fest varer kun en time - i hvert fald, hvis man er Arthur...

Vi kom, vi spiste boller, malede på kæmpe maleri og og og... Arthur fik en ridetur!

23.8.11
Summer party at the nursery

A great party lasts an hour. At least if you are Arthur.
We came, we ate buns, we painted part of a giant painting ..and..and..and Arthur rode a horse.



onsdag den 15. juni 2011

Arthur til konfirmation - Arthur at a family party

Jesper kusines datter skal konfirmeres. Vi tager bussen derud - Arthur sover i klapvognen.

Vi ankommer til Dragør Badehotel i lunt solskin. Hele Jespers familie sidder udenfor i solen mens de nyder en velkomstdrink. Da vi kort efter skal til bords indenfor i restauranten, vågner Arthur op.

Arthur er temmelig genert og vil ikke rigtig med ind. Jesper tager ham med hen til sin plads og sidder med ham. Arthur vil som sædvanlig ikke spise noget, han holder sig for ørerne og ser utryg ud, hver gang der holdes tale, klappes eller skåles. 
Da vi har siddet ved bordet lidt tid, hopper Arthur ned fra Jesper og går direkte hen til døren. Han går ud ad døren og sætter sig på terrassen.  Han kan på ingen måde overtales til at komme med ind igen, han sidder bare helt stille i solen med en bold.

Arthurs farmor og farfar og jeg selv, skiftes til at sidde ude ved Arthur - Der er en legeplads ved restauranten og Arthur løber glad rundt. Da vi når til desserten, prøver vi igen, at få Arthur med ind til festen, men han holder fast i, at han vil blive ude.

Da vi sent om aftenen går ned mod bussen, taler Jesper og jeg om, hvor imponerende det er, at Arthur selv kan mærke, at han ikke kan holde til det lydniveau der er i restauranten og derfor selv vælger, at gå væk.

15.6.11
Arthur at a family party

It is the day of Jesper’s cousin’s confirmation. We take the bus there and Arthur is sleeping in the stroller.
We arrive and enjoy the warmth of the sun. All of the guests are outside. As we enter the restaurant, Arthur wakes. He is shy and does not want to come inside. Jesper brings him to his seat and sits with him. As usual, Arthur does not want to eat – he has his hands to his ears and looks insecure every time there is speech, a song, or someone is clapping or toasting.

After having been at the table for a while, Arthur leaves Jesper and heads for the door. He sits on the deck outside and there is no convincing him to go back inside. All he wants to do is sit quietly in the sun with a ball. Arthur’s grandparents and I take turns in sitting with him. There is a playground and he is playing happily for a while. By dessert time, we try once again to convince Arthur to come back inside but he refuses.

Late at night, we head back to the bus to go home. Jesper and I discuss how impressive it is that Arthur is capable of sensing when the sound level is too much for him and choose to leave it.


søndag den 29. maj 2011

Søgning efter børnehave - The search for day care

Da Arthur begyndte i Klatretræet, håbede vi, at han skulle gå der ind til han på et tidspunkt skulle begynde i skole.

3 måneder efter hans start, var vi til møde med pædagogerne fra hans stue. De gjorde det klart for os, at børnehavegruppen ikke var optimal for Arthur. Arthurs vuggestuegruppe bestående 14 børn havde en etage for sig selv. Børnehavegrupperne bestående af 24 børn var samlet to på hver etage. I børnehaven ville Arthur ikke kunne gå fra og der ville være et betydeligt lydniveau. Kort sagt, anbefalede de os, at lede efter alternativer.


Vi aftalte, at kontakte den pædagogiske konsulent på Vesterbro, da hun måske kunne lægge følere ud i de forskellige institutioner. Det vigtigste var jo, at Arthur kom et sted hen, hvor de havde mod på en dreng med Startle Disease. Vi endte med at skulle besøge nogle få udvalgte institutioner. Nogle med et lavt børnetal og gode fysiske rammer. 


Imidlertid skete der det forunderlige, at jeg kom til at opsige vores lejlighed på Vesterbro og takke ja til en lejlighed på Nørrebro. Derfor måtte jeg nu kontakte den pædagogiske konsulent på Nørrebro i stedet. Vi aftalte, at vi skulle mødes hen over sommeren med henblik på at få Arthur i børnehave pr. 1/11 - 2011

29.5.11
The search for day care 

When Arthur started at his nursery we hoped that he would be able to stay at the same place until he was to start school. Three months after his first day, we had a meeting with his pedagogues and they told us that their day care was far from optimal for Arthur. His current nursery has 14 children on a separate floor. The day care unit had 49 children per floor and Arthur would have no place to go to seek the quiet he needs. They recommended that we looked into alternatives.

We sought help from the local consultant on these matters to find a suitable day care center. Most important for us is that Arthur is at a place where they have the courage to take in a boy with Startle Disease.  We were recommended centers with few children and great physical surroundings in our neighborhood in the western part of Copenhagen.

Then I found a new place to live in the Northern part of the city and this has entailed a new meeting this summer to find the best possible day care center for Arthur.

lørdag den 7. maj 2011

Støttetimer til Arthur - Support for Arthur

I foråret havde vi et dejligt møde med Arthurs nye pædagog, Susie og stuens pædagogmedhjælper, Anette. Oven på de ubehagelige forældresamtaler i den gamle vuggestue, var samtalen en sand fornøjelse.

Susie og Anette fortalte, at de oplevede en dreng i fin trivsel. Ligesom os, kunne de mærke, at Arthur overstimuleres og udtrættes hurtigt. Anette sagde så konkret: "Når kl. er halv tre, så kan Arthur ikke mere". En vuggestuedag på fire timer, hvoraf  to timer bruges på lur, er jo ikke meget, men for Arthur er det meget krævende.

Vi blev enige om at søge nogle støttetimer til Arthur, så stuens personale, kunne få mulighed for at gå fra med Arthur, når han fik for meget. Arthur er meget alene i vuggestuen, da han hurtigt får "nok" af de andre børn - Hurtigt kan han ikke overskue den sociale sammenhæng, og trækker sig hen til de voksne, hvorfor hans sociale udvikling naturligvis ikke er alderssvarende. Personalet ville gerne støtte Arthur i at sætte ord på sine behov og hjælpe ham til at danne venskaber. - Og måske hjælpe ham til, at kunne være i vuggestue et længere tidsrum.

Arthurs pædagoger var så søde og rare at tale med og til slut i samtalen udbrød Anette "Jamen, vi elsker jo bare Arthur" - Og jeg elsker hende, fordi hun sagde det!! Vi er så heldige med den vuggestue!

7.5.11
Support for Arthur

In the spring we had a meeting with Arthur’s new pedagogues Susie and Anette. Where meetings with the old nursery were uncomfortable, this was a true pleasure. 

Susie and Anette told us that they saw Arthur as a boy who thrives. Like us, they notices that he is easily over-stimulated and tired. A normal day at the nursery is four hours for Arthur and he sleeps for two of those, so it is not a lot of time. However, for Arthur it is very demanding.

We agreed to apply for extra support for Arthur to give the staff at the nursery resources to take him away from the other children when he had a need for quiet time. Arthur spends a lot of time on his own at the nursery because the other children easily becomes too much of a handful for him. He does not understand the social contexts and seeks the adults for support. Therefore, his social development is naturally not age appropriate. The staff wants to help Arthur express his needs and support him in forming friendships. Furthermore, they hope to help him in a way that makes it possible for him to stay at the nursery for a longer time span.

Arthur’s pedagogues were nice to talk to, and at the end of the meeting, Anette said: We just love Arthur. I love her for saying that – we are so fortunate to have that nursery.


lørdag den 5. marts 2011

Fastelavn 2011 - Festivities at the nursery

Egentlig havde jeg mest lyst til, at skåne Arthur for endnu et arrangement i vuggestuen, efter det mislykkede julearrangement, men på den anden side, er det jo vigtigt, at være med...

Derfor havde jeg taget tidligt fri fra arbejde, da vuggestuen i fredags holdt fastelavn, så jeg kunne give ham en overkommelig dag ved at hente ham tidligt.

Arthur ankom i badekåbe og hjemme-(mormor)strikket hue - Klædt ud som yndlingsfiguren Yoda! Han blev sat ved bordet sammen med de andre udklædte børn og jeg vinkede ængsteligt farvel og forsikrede vuggestuen om, at de bare kunne ringe efter mig.
 ---
Da jeg tidligt på eftermiddagen hentede Arthur, viste det sig, at han havde haft en fortrinlig dag. Han var i glimrende humør og selvfølgelig fortsat iført badekåbe. Fastelavn havde han dog ikke deltaget i... Da der skulle slås Katten af Tønden og leges lege, havde Arthur forladt stuen til fordel for det tomme rytmikrum... Her havde han så fået en skål popkorn ind :)  

Lidt træt var han dog, da han kom hjem...

5.3.11
Festivities at the nursery

I really felt like sparing Arthur yet another holiday celebration at the nursery after the unsuccessful Christmas party. However, it is important to participate.

Therefore, I had ended my shift at work early this Friday. The nursery was celebrating fastelavn (a Nordic kind of Halloween-ish celebration) and I wanted to make Arthur’s manageable by picking him up early.

Arthur arrived in a bathrobe and a knitted hat – dressed up as his favorite Yoda. He was placed at the table alongside the other children and I nervously waved goodbye and told the nursery to call me if he needed me.

Early in the afternoon, I picked up Arthur and he had had a lovely day. He did not take part in the actual celebration – a noisy game resembling the batting of a piñata – but had made off to a quiet room with a bowl of popcorn.

He was rather tired when we got home, though.


torsdag den 3. marts 2011

Arthurs nye vuggestue - Arthur’s new nursery

Forinden Arthurs start i Klatretræet, ringede jeg til lederen. Jeg fortalte kort om Arthur og hans sygdom. Hurtigt fandt lederen i samarbejde med en af pædagogerne ud af, at han skulle gå i institutionens nye vuggestuegruppe "Fugleungerne". Gruppen var nystartet og Arthur ville blive det 7. barn på stuen. Stuen var ydermere placeret på 4. sal, hvor institutionens rytmikrum også var, hvorfor der var ekstra god plads og god ro.
En uge inden Arthurs vuggestuestart, mødtes jeg med stuepædagogen, Karmen. Jeg fortalte om Arthurs sygdom og om hans vanskeligheder. Jeg afleverede kopi af Arthurs journal og diverse notater og udtalelser. 
Da Arthur startede, fik han en utrolig dejlig velkomst. Arthur mødte åbenhed og omsorg. Fra at have haft en urolig dreng, hentede jeg nu en mere harmonisk dreng hjem, hver eneste dag. Arthur ville gerne i vuggestue hver dag og blev hurtigt glad for "Kar", hvis hår han nussede hver eneste morgen. Der blev taget hensyn til Arthur og han blev sikret rolige omgivelser. Ind i mellem kunne han deltage i rytmik, andre gange måtte han gå fra.


I en lang periode, gik det rigtig godt med Arthur, men som stuen fyldtes op, fik Arthur det også sværere og sværere og begyndte igen at bide, dog i et meget mindre omfang. Da stuen nåede 14 børn, blev det hårdt for Arthur at være der, selvom Arthur på meget flot vis, begyndte at trække sig, når for mange børn, var samlet sammen, eller der var for meget larm. Ofte sad Arthur i det tomme rytmik og legede for sig selv, når vi hentede ham.


Nu skal vi snart holde møde med personalet og forhåbentlig vil de søge støttetimer til Arthur.

3.3.11
Arthur’s new nursery

Before Arthur was to start at his new nursery, I called the manager to describe Arthur’s condition. The manager and the pedagogues decided that Arthur should be part of a new, small group at the nursery as child number seven. Besides being only a small number of children, the group was located in a quiet and rather spacious part of the building.

A week before Arthur’s first day, I met with the main pedagogue, Karmen. I told her about Arthur’s illness and the difficulties he lives with. In addition, I gave her a copy of his hospital journal and various notes from his doctors.

Arthur has a wonderful start at the nursery – he was met with open minds and great care. Where he used to be fidgety, I now picked up a calm boy every day. He grew very fond of “Kar” and fondled her hair every morning. The staff took special care around Arthur and made sure that he had quiet surroundings. Some days he could participate in rhythmics and other times he would leave.

For a long time things were great with Arthur, but as more children joined the group at the nursery, it grew consistently difficult for him to be there. He started biting again – though not nearly as much as before. As the group came to 14 children, Arthur increasingly found it difficult to participate even though he did a great job of leaving when the children and the noise became too much for him. Often, he would be playing on his own in a separate room when we came to pick him up.

Now we are to have meeting with the staff and we hope they will apply for extra support for Arthur.