Siden mit sidste indlæg er der sket en del. Ærligt, så har jeg ikke haft skyggen af overskud til at opdatere noget som helst herinde, men nu er jeg nået dertil hvor jeg har brug for luft. Jeg skal have lette trykket. Og der bliver altså her. Her, hvor ingen kommer med velmente kommentarer om at det nok skal gå, om hvor stærke vi er eller om hvor godt vi gør det. For jeg føler ikke noget af det er rigtigt, tværtimod bidrager det bare til en endnu dybere nagen og dårlig samvittighed.

Jeg føler det hele bliver værre og værre, jeg føler mig slet ikke stærk nok og jeg føler mig som verdens dårligste mor.

Til info, så har jeg valgt at fortsætte disse indlæg på dansk, det blev lidt for kringlet at forklare mig på engelsk.

Inden jeg starter, så får du lige en lille ordbog. Måske kender du det hele, måske gør du ikke. Brug den som du har lyst 🙂

Ordbog:

Autisme: Autisme er en udviklingsforstyrrelse. Personer med autisme har en anderledes måde at opleve verden på og kan have en nedsat evne til at sætte sig ind i andre menneskers tanker og følelser. Det gør sociale sammenhænge og kommunikation med andre mennesker meget svært.

Autisme er en livslang gennemgribende udviklingsforstyrrelse. Det betyder, at forstyrrelserne præger personens udfoldelse i alle situationer1. Ofte bruges betegnelsen autismespektrumforstyrrelse, fordi der er tale om et sammenhængende spektrum af bestemte neurologiske karakteristika.

Autisme skyldes formentlig forandringer i hjernens udvikling. Autismespektrummet spænder over et bredt felt. Det kognitive funktionsniveau kan være højt over det normale, men det kan også være meget lavt. Derfor er der store forskelle i sværhedsgraden af de forskellige diagnoser inden for udviklingsforstyrrelserne og fra individ til individ. Autisme er medfødt og viser sig ofte tidligt i barndommen. 

Asbergers: Det bliver beskrevet på mange forskellige måder på nettet. Vores psykolog fortalte os at det i bund og grund betyder at man har normal intelligens. Ikke hermed sagt at man ikke kan have normal intelligens med andre former for autisme. Disse betegnelser er for øvrigt forældede, og man er ved at implementere en anden model, som jeg ikke kender godt nok til at kunne beskrive den endnu 😉

Infantil Autisme: Når tegnene på autisme viser sig før barnet er fyldt 3 år.

Funktionsnedsættelse: Begrebet funktionsnedsættelse er det overordnede begreb for tab eller nedsættelse af kropslige eller mentale funktioner. Det er samspillet mellem personens funktionsevne og omgivelserne, der bestemmer betydningen af funktionsnedsættelsen og dermed personens handicap.

PPR: Pædagogisk Psykologisk Rådgivning er en kommunal rådgivning, hvor lærere og pædagoger ved kommunens skoler og dagtilbud samt forældre kan henvende sig for at få råd og vejledning vedrørende børn og unge fra 0-17 år.

BUC: Børne- og Ungdomspsykiatrisk Center

Maskering: Maskering betyder, at man spiller skuespil i sociale situationer for at virke mere neurotypisk, end man egentlig er. Maskering er primært en ubevidst proces, en tillært overlevelsesmekanisme for at undgå mobning og social eksklusion.

Psykoedukation: Psykoedukation er undervisning af patienter og deres pårørende. For at sikre, at patienter med længerevarende psykiatriske sygdomme og deres pårørende tilbydes psykoedukation af høj kvalitet, har Psykiatrien udviklet manualer for disse forløb.

TF: Tværfagligt Forum. Et møde hvor forskellige fagpersoner kan tale om udfordringer for forskellige børn. Jeg mener det ofte er psykolog, specialpædagog, talepædagog, fysioterapeut og familierådgiver der er med sammen med lederen og eventuelt relevante medarbejdere fra en institution eller skole.

DPU: Dansk pædagogisk udviklingsbeskrivelse er et observations- og dokumentationsværktøj, som de fagprofessionelle i SBU anvender omkring børnene og de unge.

Siden sidst

Mit seneste indlæg er udgivet for et år siden. På det tidspunkt sad vi i en venteposition, hvor vi hele tiden blev holdt hen i forhold til henvisning til udredning. Børnehaven så ingenting. PPR så ingenting. Og vores ord og beretninger fra hjemmet, som for øvrigt var omhyggeligt beskrevet, vejede åbenbart ikke særligt tungt.

Henvisning til udredning

Da vi endelig kom til det møde, hvor vi skulle lave henvisningen, blev mødet aflyst (corona..). Først i marts måned kom vi til et møde med vores PPR psykolog, efter en lang kamp hvor vi vedvarende holdt på at vi ønskede en udredning, og hvor vi gentagne gange blev mødt med skepsis og bebrejdelser. Henvisningen blev lavet med grundlag i vores tidligere nævnte skriv om situationen i hjemmet. I april blev henvisningen endelig sendt afsted, da der var nogle formalia omkring henvisningen som skulle på plads fra PPR’s side. Under en uge efter den blev sendt blev jeg ringet op. Alfred var godkendt til udredning.

Udredningen

Forløbet på børnepsyk var godt. Jeg har aldrig oplevet at føle mig så hørt og forstået før. I modsætning til hvad vi hidtil havde oplevet blev der spurgt ind til de ting vi oplevede, og selv da vidt fremmede mennesker observerede Alfred, så så de lige igennem hans maskering. De beskrev den Alfred som vi kender hjemmefra. Der blev lagt en plan for hvilke undersøgelser der skulle laves. Vi var til samtaler uden Alfred, og så var Alfred inde til både fysiske undersøgelser (for at sikre at han fysisk ikke fejlede noget, som kunne forårsage ændret adfærd) og nogle undersøgelser som jeg har glemt navnet på, hvor det bl.a. gik ud på at undersøge hans forestillingsevne mm.

Jeg husker det som om der gik 2-3 måneder fra vi startede til Anders og jeg var til tilbagemeldingsmødet, hvor vi fik at vide, hvad de var kommet frem til (Her får nogle at vide de ikke er sikre på om der er en diagnose/hvilken diagnose, så der skal laves flere undersøgelser). De var ikke i tvivl.

Ugen op til mødet var Anders og jeg enormt rastløse og ængtelige. Vi ønskede jo ikke for vores barn at han skulle have en diagnose, og samtidig var vi skrækslagne for, hvad vi skulle gøre hvis han ikke havde. For han havde det på det tidspunkt elendigt.

Det eneste de var i tvivl om, var om han skulle have en Infantil Autisme diagnose eller en Asbergers diagnose. I grunden er det ligemeget, for de betegnelser er ved at blive afskaffet, hvilket jeg synes giver rigtig god mening. Men det er en snak til en anden gang.

Han fik en Infantil Autisme diagnose – autismen var de ikke i tvivl om.

Derudover vurderede de, at han havde en overbelastningsreaktion, hvilket vel kan forklares som en slags stress for børn.

Vi nåede ikke ret meget andet end at få diagnosen, og så var det ellers bare farvel og tak – og held og lykke med det. Ej, det passer ikke helt, man bliver tilbudt en såkaldt psykoedukation, hvilket i bund og grund var en times snak om hvad autisme er. Vi blev tilbudt en ekstra samtale, fordi de kunne høre og mærke at vi var vanvittigt pressede. Den sidste samtale var her i starten af november, hvor de kunne konkludere at Alfred har begyndende angst, hvilket førte til en underretning til kommunen for at understrege alvoren af hans tilstand. Men så var det også farvel og tak.

Overladt til os selv

Nu er vi jo stadig nye i denne verden, og alligevel er jeg allerede død træt af det hele, som I måske kan fornemme. Det jeg har savnet allermest er, at der var en form for procedure. I ved “Dit barn er autist. Det udløser 10 samtaler med en autismespecialiseret psykolog til jer som forældre og vi skal sammen lave en plan for dit barn om hvad der skal ske herfra. Vi har for øvrigt denne her hotline hvor I kan ringe hvis I har spørgsmål eller brug for hjælp til hvad I skal gøre hvis tingene bliver værre.”. Men det er der ikke.

Alfred fik sin diagnose midt i sommerferien, og derfor var alle instanser mere eller mindre lukket. Grundet hans overbelastningsreaktion havde BUC anbefalet at hans skolestart skulle være meget skånsom. 2 dage før skolestart fik jeg fat på inklusionsvejlederen og Alfreds kommende klasselære, og vi aftalte at han skulle starte op med at være i skole halvanden time om dagen. Jeg måtte skrive til min arbejdsgiver hvordan landet lå, her et par dage før, og så måtte jeg jo tage det hele som det kom.

Vi havde en forventning om at han inden for nogle uger ville gå op i tid, og måske ville han ikke kunne klare SFO, men i hvert fald være fuldt skoleskema inden jul. Nu er vi så nået til jul, og det eneste der er sket er, at Alfred har fået det dårligere og dårligere.

Man kan sige hans verden bliver mere og mere sort hvid. Han er enten meget glad eller meget vred. Mest vred. Folk er enten fjender eller venner. Mest fjender. Mad er enten go eller no go. Det meste no go. Han siger dagligt at han ikke ønsker at leve. Og det er altså min lille dreng på 6 år de ord kommer fra. Han græder om aftenen, siger han ikke fortjener at leve og at han er dum. Han føler sig forkert. Han råber og slår, skændes konstant med alle i familien. Han har konstant nedsmeltninger. Det at skulle ud af døren for at hente Ellie eller handle kan være et levende helvede, og det tager altid mindst en halv time før vi er kommet over det væreste af hans nedsmeltning og har fået talt sammen. Nogle dage gemmer han sig når han skal i skole. Nogle dage stikker han af fra mig når vi kommer til skolen. Han har det bare så dårligt. Og vi sidder her, magtesløse. Prøver desperat råbe nogen op, søge om hjælp, forklare situationen. Men alt omverden ser er en sød og pligtopfyldende dreng, som klarer sig såååå godt. Hvis det bare var sådan ville jeg jo være lykkelig.

I næste uge skal vi til møde med skolen og PPR. Vi skal prøve at overtale dem til at visitere ham til et specialtilbud. Det er efter sigende ikke nemt. Men vi er nået dertil, hvor vi ved der skal ske noget drastisk før han kan få det bedre. Og vi er desperate efter at se vores dreng få det bedre.

Systemet

Som de fleste nok hører ind imellem i medierne, så er det ikke for sjov, når man pludselig står der, med det der officielt bliver betegnet som et barn med et handikap. Jeg er mildest talt i chok over vores såkaldte velfærd på det område. Det føles som om jeg er kommet om bag den pæne og velholdte facade af velfærdsystemet.. om på bagsiden, hvor der hersker kaos. En åben slagmark, hvor systemet og borgerne bekriger hinanden. Nogle slås, andre sidder bare hjælpeløst i et hjørne. Det er rystende.

Et meget godt eksempel så jeg da jeg, i et fællesskab for forældre til børn med autisme, så et kursusopslag til sagsbehandlere i en kommune i Jylland blev delt. Kurset gik ud på at sagsbehandlerne skulle lære at takle ‘markante’ forældre. De der typer der kommer til møde med en advokat. Forældrene var delt op i forskellige arketyper, og den fik ikke for lidt. Jeg sad måbende og læste denne teaser til et kursus, ledte panisk efter tegn på at det var en joke. For helt ærligt. Når man som forældre har brug for en advokat for at få den hjælp der ifølge serviceloven burde blive vejledt om og tilbudt, hvem er det så den er gal med? Forældrene der kæmper en umådelig hård kamp for deres børn og familier, eller kommunerne der bruger penge på kurser i hvordan man håndterer de der irriterende typer som vil have noget fra en eller anden latterlig servicelov de hentyder til..

Vi vidste godt at det ville blive en kamp. Derfor allierede vi os fra start med en privat sagsbehandler, som har styr på paragraffer og love. Hun vejledte os i hvad vi havde ret til, hvad vi kunne søge og hjalp os med at lave ansøgningerne. Ja, egentlig er det jo kommunens ansvar at vejlede.. men de dukkede ikke op til det netværksmøde der blev holdt, hvor børnepsyk overdrager deres viden og kommer med anbefalinger til støtte af det pågældende barn til kommunen og skolen. Der var ikke andre end os der undrede sig, det er åbenbart helt normal praksis at de ikke dukker op..

Derudover har vores ‘hjælper’ været behjælpelig med de allerede virkelig mange klager vi har måttet sende, med at søge aktindsigt hos ankestyrelsen osv. osv. osv.

Siden den dag Alfred fik sin diagnose er en stor del af vores aftener gået op i ansøgninger, afslag klager, dokumentation og alt muligt andet virkelig kedeligt, men virkelig nødvendigt. En process som, når man i forvejen er presset fuldstændig vanvittigt, føles uendelig og uoverkommelig. Jeg får dagligt beskeder om at ‘der er ny post i din e-boks’.. Nogle aftener sætter vi os i sofaen og ser forvirrede på hinanden.. Hvad var det nu vi skulle? Har vi glemt at svare nogen? Hvad betyder det der brev der kom i dag?

Hele den process man skal igennem, og som jo ofte er en løbende process fordi behov kan ændre sig, er stressende, udmattende og den tager alt alt for meget af vores overskud. Overskud som burde være brugt på børnene. På at møde dem, på at være rolig selv efter 58. nedsmeltning siden vi stod op for 3 timer siden, på at sætte os ind i hvad vi kan gøre for at gøre det endnu bedre, deltage i kurser eller møder som kan klæde os bedre på og skabe bedre vilkår for alle i familien. Investere vores tid fornuftigt i stedet for fx at bruge den på at sætte den nye sagsbehandler ind i vores sag igen eller en af de tusind andre ting vi er nød til at få styr på for at vi kan få de mest basale ting i vores hverdag til at rulle nogenlunde. Og vi har endda en hjælper. Hvad så med alle dem der ikke kunne få det? Vi havde knap råd selv. Men vi havde heller ikke råd til at lade være.

Vi er pt. på vores 3. sagsbehandler siden juli måned. Vi har allerede lært at det er som at spille i lotto, om ens sagsbehandler er god. Og med god mener jeg, om vi skal kæmpe meget eller lidt for at få hjælp. Vores ansøgning som vi sendte tilbage i juli måned er gennemarbejdet og under hver ting vi søger om, bliver der henvist til lovtekst. Jeg tænkte, at den måtte gå rent ind, dengang vi sendte det. Men der er hele tiden et eller andet. Så vil de ikke lave den undersøgelse før vi har været igennem det her forløb, men dem der styrer dét forløb vil ikke have os, og så skal vi have lavet en anden undersøgelse før de kan tage stilling til, om den undersøgelse vi gerne vil have lavet er relevant. Så er det skolen der skal henvise til den undersøgelse osv. Jeg kender ikke systemet indefra, men udefra ser det godt nok ineffektivt ud.

Og mange af de sagsbehandlere der sidder med sagerne har ingen idé om hvad det handler om. Det kan de jo ikke altid gøre for. Men det skaber mange misforståelser og utryghed. Vi havde fx en sagsbehandler som ringede og spurgte om vi troede Alfred havde fået autisme under fødslen og om der var nogen der havde sagt noget om det til os.. Måske sidder du og læser det her og tænker ‘øøh,, hvorfor må hun ikke spørge om det?’. Og det er helt okay at du tænker sådan. For du er (tror jeg da) ikke sagsbehandler, der sidder med sager som omhandler autister. Sager hvor afgørelserne kan være livsomvæltende på både godt og ondt.

Autisme er for øvrigt medfødt.

Ellie:

Tilbage i januar blev Ellie endelig taget op på et TF. Vi fik at vide at vi skulle indkaldes til et dialogmøde, ligesom vi startede med med Alfred helt tilbage i starten. Det dialogmøde har vi så endelig fået afholdt, her sidst i november. Psykologmangel har gjort ventetiden uacceptabel lang.

Heldigvis har det gode ved Alfreds situation været, at jeg har kunnet give Ellie kortere dage i børnehaven, og det har gjort underværker for hendes trivsel og overskud. Ikke at vi ikke har udfordringer med hende, for det har vi, og de bliver flere og flere.

Nu er vi er startet forfra med barn nummer 2, og selvom man skulle tro, at historikken omkring Alfred ville arbejde for os, så er det ikke tilfældet. Vi møder den præcist samme skepsis. Til gengæld tvivler vi ikke længere så meget på os selv, så vi er nok mere kontante end med Alfred. Gennem december måned skal Ellie observeres over nogle omgange af en PPR psykolog og en special pædagog, der skal udarbejdes en DPU, og det bliver denne gang gjort både med børnehaven og med Anders og mig, for at de kan tage det vi oplever i hjemmet med. Det synes vi er en virkelig god løsning, da det, også med Ellie, primært er i hjemmet vi oplever udfordringerne. Vi synes dog Ellie er meget mere ‘gennemsigtig’ end Alfred, i hvert fald på mange punkter. Og der var en tid hvor børnehaven var enige med os. Men pludselig skulle de lave en udtalelse til kommunen i forbindelse med en anden undersøgelse, og her skrev de at alt var godt. Jeg spurgte dem undrende hvordan det hang sammen med at de, få uger før, havde bedt om lov til at tage Ellie op på et møde, for at få sparring til nogle udfordringer de ikke vidste hvordan de skulle takle. Her var svaret at de svarede ud fra hvordan hun har det i dag, og ikke hvordan hun har haft det. Jeg svarede at jeg synes det virkede meget unuanceret, og at det for øvrigt var noget af et benspænd for os i forhold til at få hjælp fra kommunen.. Det svarede de ikke på. Jeg ved godt det ikke er deres ansvar at skrive noget der giver os hjælp, men jeg føler at det her tangerede til at tilbageholde vigtige oplysninger, og jeg forstår stadig ikke helt hvorfor det skulle gøres på den måde.

Mavepusteren jeg havde ventet på

For at være ærlig, så synes jeg de sidste år har været helt vanvittigt hårde. Men det sidste halve år har været vanvittigt på så mange måder.

I denne uge kom så endnu en mavepuster. Jeg har mistet mit job. Jeg har ikke kunnet varetage det fyldestgørende. Det har naget mig. Naget mig at jeg ikke har kunnet gøre det godt nok. Jeg har ikke været tilstrækkelig nogen steder. Jeg slår ikke til overfor mine børn, jeg slår ikke til i mit ægteskab, jeg slår ikke til på arbejdet. Jeg kæmper konstant. Jeg er på overarbejde. Jeg er på 24/7. Og nu kan jeg så tilføje endnu en bekymring til læsset.

At miste sit job kan jo ske for alle. Jeg har ikke prøvet det før. Jeg kan mærke det er svært, jeg føler mig på en måde som en fiasko, som om jeg er til grin. Jeg gjorde det ikke godt nok, og jeg er typen der altid gerne vil gøre det godt. Det betyder noget for mig.

Det kom som en chok for mig.

Derudover er det ikke lige så ligetil at miste sit job i vores situation som for ‘almindelige’ mennesker. Ikke fordi det nogensinde er nemt. Men jeg er fx ikke berettiget til dagpenge, fordi jeg går hjemme med Alfred de timer hvor han ikke er i skole og dermed ikke er til fuld rådighed.

Og de jobs der er så fleksible så man kan tage hensyn til reduceret skoleskema, syge børn og svære dage, og som for øvrigt er nød til at ligge tæt på skolen for at jeg kan nå frem og tilbage, de hænger altså mildest talt ikke på træerne. For hvis man skal være helt ærlig, så er jeg jo i den forstand ikke ligefrem arbejdsgiverens drøm.

Jeg vil gerne arbejde. Jeg har altid været glad for at arbejde, for at indgå i et fællesskab og bidrage med noget. I lang tid har mit arbejde været et frirum. Et sted hvor jeg var et ligesindet menneske, og ikke mor.

Jeg hader når ting er usikre. Jeg har brug for at de basale ting er på plads. Jeg vil gerne være sikker på jeg har et sted at bo uden en bagkant. Jeg vil gerne være sikker på der er penge nok på bankkontoen til det vi har brug for. I ved, de basale ting. Af samme grund blev det aldrig mig at være selvstændig på fuld tid, for jeg bekymrede mig alt for meget over, om jeg nu ville få nok arbejde.

Jeg talte med en som selv har to børn med funktionsnedsættelser. Jeg sagde at jeg følte der var så mange lag i hvor hårdt det føles lige nu. Når jeg ser ordene stå der, så lyder det vanvittig ynkeligt. Men det her, det ér altså hårdt.

En ting er at det er hårdt at være i at Alfred har det som han har, de reaktioner og den adfærd der følger med det. Jeg skal konstant være på vagt, der er ting jeg ikke må sige, han tør ikke være alene, hans mad skal altid være på en bestemt måde, jeg skal huske at forberede, jeg skal have uendelige mængder af tålmodighed når han for 117. gang får en nedsmeltning, og jeg ikke har nogen idé om hvad der skete. Jeg er så meget på at det nogle gange føles som om min hjerne snart brænder sammen.

Jeg skal også have øje på Ellie. Sørge for at forklare hende hvad der sker, når hendes storebror siger han vil hoppe ud af vinduet, være sammen med hende og give hende den tid hun også har brug for. Og tackle hendes udfordringer. Se hende.

Jeg skal være kone. Jeg skal vise interesse, omsorg og glæde overfor min mand. Og have lyst til sex…

Jeg skal være kollega og ansat. Udføre et arbejde, ligge alt det derhjemmefra til side. Stoppe med at tænke på mine to ulykkelige børn der ikke havde overskud til at komme afsted. Fokusere på mine opgaver, for om en time skal jeg tilbage til skolen og hente Alfred.

Det er ligesom det nærværende lag. Så er der det lag hvor jeg bekymrer mig for den nære fremtid og det praktiske. Hvordan får vi Alfred i trivsel? Hvem skal passe Alfred når vi skal til møde for 5. Gang i denne måned? Skal min far tage fri igen? Og hvad med forældremøde? Først i børnehaven, så i skolen. Og skolehjem samtalen på tirsdag. Hvad med den der DPU vi skulle lave i næste uge? Kan Alfred klare at blive passet igen? Skal han så holde fri dagen efter? Hvem henter Ellie? Hvordan får jeg klaret det møde på arbejdet, Anders arbejder jo aftenvagt i denne uge, og Ellie er syg. Alfred kan ikke klare at komme med på arbejde. Ellie vil skrige for højt. De vil skændes for meget. Hvordan skal vi begge komme til det møde når Anders ikke må få fri. Skal vi stoppe med at tage med til de vigtige møder begge to? Eller glemmer jeg for mange ting alene? Men hvis vi bliver ved med at bede om fri mister Anders måske også sit job? Skal vi tage med til det der sociale arrangement på skolen for at vise at vi altså er ‘ressourcestærke’? Er vi overhovedet det?

Og så er der de mere overordnede bekymringer.

Hvad gør jeg hvis jeg mister mit job? Hvordan komme jeg tilbage på arbejdsmarkedet når Alfred får det godt igen? Hvad hvis Anders mister hans job? Hvordan bliver Alfreds liv? Vil han få gode venner? Vil han få en kæreste? Gør vi det rigtige med ham? Skal vi have Alfred i aflastning? Har Ellie en diagnose? Har vi ødelagt hende? Lider hun meget under at have en bror med autisme? Kan vi få et barn mere? Kan vi klare et barn mere? Kan vores børn klare en søskende? Får vi nogensinde råd til et hus? Hvor skal vi bo henne? Hvilken kommune har mon den bedste hjælp til vores børn? Har jeg selv en diagnose? Hvad hvis jeg har? Burde jeg få det undersøgt?

Og tusind millioner andre bekymringer, spørgsmål og tanker.

Tak

Hvis du er nået hertil, så tak. Tak fordi du kom igennem, og fordi du gad at læse med. Tak fordi du vil være med til at lære mere om, hvordan det er at være i vores situation. Mennesker som dig er grunden til, at jeg har håb for at det bliver bedre.

Skriv endelig til mig hvis du har spørgsmål, hvis du selv er i en lignende situation og mangler sparring, eller noget helt 3.

It’s been a while since my last update. I needed to process things, and I still am.

It feels like this part is still something we’re ‘in’ and somehow that makes it so much harder to write about.

Meeting the psychologist

We went to a meeting with the psychologist. When we came we all just looked at each other. My husband broke the silence by saying ‘sooo… we’re not really sure why we’re here’.

She just looked at both of us ans started laughing. She felt the exact same.

But somehow we managed to get those two ours to fly by in no time.

Basicly she told us that after the observation they didn’t have any concerns, and even though we weren’t supposed to know this until the meeting with the special needs caretaker and the staff from kindergarten the following week, they didn’t see any reason to go on to get him checked for any diagnoses.

My heart fell to the floor and the frustration rushed up in me.

‘But what about all the things we’ve told you? He is NOT okay! I need to know why, what’s going on. We’ve cancelled all appointments with friends and family for months, we prepare him for everything, we do everything we know to. We can’t even take him to a supermarked to pick up a few things without him going crazy. What are we supposed to do? Who will help us? And what will happen when he starts scool? It took him two years to adapt to kindergarten and it’s still so so so freaking hard on him! I don’t know what to do’. The words just came out like I was boiling over.

She said a lot of ‘annoying’ psychologist stuff like ‘I hear you’ bla bla bla.. I know she ment Well, but I honestly just felt like she was trying to get rid of us and move on.

She is pretty young, and we all have to start somewhere, but in situations like this I would feel more safe with someone who have seen more.

She kept saying that she thought we should turn him in to the local athority and get family advisors from there out to watch him in our home. We repeated that we didn’t think he would react when they were there, told her that we tryed to install a camera at home to catch some of the episodes to show them, but that he after a few minutes saw it and asked ‘is this to know if I do anything I’m not supposed to?’. He is such a clever boy, maybe even a little too clever for his own good sometimes. But she didn’t change her mind. And she told us that she never heard about this masking (acting VERY different at home compared to beeing amongst other people) before, and that is defenitely didn’t had anything to do with a diagnose.

I just kept thinking ‘but what does it have to do with then? What should we do to help him? We need help’.

I even told her how he gets all scared when he walks out the door from kindergarten and then a kid comes by to try talk to him after he ‘looses his mask’.. he can’t deal with it, he can’t step back that quickly, the mask is easier to take off than on..

Then, at last she said, that is we wanted him diagnosed and really thought that was the way, she would give us a ‘buttom’ that we could press at any time, but that she first of all didn’t think he would be accepted to go through because they only have time

To take 50% of the cases of kids who are reccomended to get checked and that she also thought it would be too hard on him to go through.

50%.. only 50% of the kids who are reccomended to get checked out passes because of low resources.. that is horrible!

And too hard on him? I mean.. we’re not doing this because we think it’s fun or easy.. we’re doing it to help him!

We went out with a lot of questions and even more frustrations than we had before we went in. The next meeting seemed meaningless. We already knew what they were gonna say.. but then again.. she gave us an exit.. one that we would hardly get any use of from what she said, but did we have to try? Would it make us bad parents if we pushed it through? Would he be able to handle it? And if we don’y and find out later on that there is something wrong, would we ever forgive ourselves for not taking this chance?

The big meeting

One week later we went to the next meeting. Besides talking about what we already talked about with the psychologist we were also to hear some results of a ‘test’ they made from watching Alfie and asking the caretakers a lot of questions about his abilities in different matters, such as his language, his social skills etc compared to his age.

We started the meeting with that. The special needs caretaker started. She told about the things they have been focusing on and smiled. Them she showed us a curve. And he was above the curve on every point except for one – social skills. I didn’t know what to say. At one point I felt proud.. my little clever boy!! He was blowing the scale! But on the other hand I was frustrated, because.. it was just one test. This wasn’t a full picture.

But then she started to talk. She said that this was the reason that a test like this couldn’t be seen alone. Because looking at this there was nothing to worry about.

And then She added something. For the past few months she has been running a program with the boys from the group that are going to scool this summer. It’s a program about anger, what anger feels like, why we feel it, how we feel it and how we can react on it.

She told us that she had been paying attention to him during this and that she actually saw a boy that never took a break, that was so in to what he’s doing and that is trying almost too hard. Where the other boys sometimes looked out the window, played with a pencil or whatever they did to take those natural breaks sometimes, Alfie never looked away. When he was asked something he was clearly doing everything in his power to look and sound perfect, to figure out what they wanted him to say or do.

Whenever he was teased, disturbed, whenever he had to compromise he never reacted. They told us that thinking of that, it was no wonder he gets aggressive and extroverted when he gets home, because he was a ticking bomb waiting to explode all day.

We talked back and forth. I again expressed my concerns that we needed some help. How would we know how to learn him to show feelings during the day, we didn’t saw that problem at home, so we didn’t have the option to act when it happened. Who could and would help us?

They kept telling us to talk to the family advisor. We read up on that since the last meeting and had a lot of warnings about not going there. They didn’t have the money to help, the staff was constantly replaced and it might end up putting us and him in an even worse situation for a number of reasons.

Then sunddenly the special needs caretaker said ‘I know this was not what we agreed on (looked at the psychologist) but I’m starting to change my mind. I think we should go on with this and get him checked.

We didn’t knew what to say. We asked about the thing about getting approved and if we would even have any chance, and she agreed she wasn’t sure, but that if we waited a few months (the system is under a lot of pressure now because they have to evalue all kids who need to postpone scool start for another year) we would have a better chance.

She told us that it was a big decision and that she didn’t think we should be the ones to take it.

If we are to be accepted we should expect 4-5 months before they can start. There’s no telling how long it takes, they had a girl now who were a bit like Alfie, they weren’t sure, so she had to come to the hospital 6 hours a day every day for a month to make sure they didn’t overlook anything..

This would mean he would start this at the same time as the big kids move to their new scool and start adjusting there before the ‘real start’ after summer. This is a big concern for us. One thing is that it’s really hard on him to start something new, another is that he’s mostly struggleing on the social level. If he were to start something new and only be there for a short time and at the same time be going to the hospital several times a week it would be really hard on everyone. We talked about keeping him in kindergarten until after the summer holiday, but again, that would mean a huge setback on the social level and he would be so upset to be ‘left behind’ without his friends he were supposed to start scool with. We all agreed that he is ready for scool, he loves doing asignmemts, he’s so smart and he wouldn’t thrive beeing held back in kindergarten for another year. But this is all guessing, nothing is certain yet.

And so we agreed to meet again after christmas a talk again.

What about Ellie?

After the meeting i asked the Leader from daycare if I could have a word with her about Ellie. Since last time I tried to talk to the caretaker from her group I never heard anything more, and I wanted to hear what she had to say since she’s the only one left who knows Ellies history. She never heard about the things I told the caretaker. No surprice. But she was very understanding and thought we should take it to a meeting with a special needs caretaker, a psychologist and a Physiotherapist/occupational therapist occupational therapist (much as we started with Alfie). She asked about the Physiotherapist we went to last year and if we should call her in again, but I told her she was young and didn’t seem to have much experience with cases like Ellies, so we agreed we needed someone more experienced.

After this we left. We didn’t say much to eachother. We were both filled up. Releaf, questions, worries and everything inbetween. Suddenly we felt heard. And yet we didn’t feel confident this was ‘it’. What if they would change their minds before our next meeting? How would we get through this? Two kids going through this while already struggleing so much. My husband and I having to keep our heads cold and above water for another 6 months at least. More struggles, more worries, more questions, more stress, more bad consience.. we already feel like we’re only just getting through the days, some days more gracefull than others. Afraid that we’re doing everything wrong. Desperately looking for air, a break, a moment of silence.

And now what?

About 4 months ago I took a consultent job at a Hotel as SoMe and Event manager. I love it. But it takes up a lot of time, and with my photo business on the side I’m working a lot. We need the money, so I can’t change much. My husband is home looking for a job, lots of hours alone with the kids. He’s doing really great, but it’s so stressfull and hard on him to be alone with them, and I have no idea what we will do when he gets a job. Who will take the kids to the hospital if they both get cleared to be checked out? Who will pick them up early because they can’t handle the long days? How are we supposed to be good parents and do ‘life’ at the same time? Will we loose all of our friends?

I mean, parents with perfectly functioning kids are struggleing. How are we supposed to get through with what we have? Sometimes it feels like the burden we have is too heavy for us, that we’re constantly on the edge of breaking. No break. No getting up for air.

I don’t know.

But for now we’re taking one day at a time. Sometimes we fail. We appoligize. We kiss. We hug. We make up. And then we try again tomorrow.

My mum is working as a teacher and went to a reading with a specialist in ADHD. She called me after, told me it was really great, that the women who was speaking was a mother and her daughter has ADHD. She’d been working with parents, kids and institutions who had connections to people with ADHD to help and guide them. We are currently trying to figure out if she would be able to come home to us, give us some advice and guidence. Maybe for Anders, and even though Ellie doesn’t have a diagnose (yet?) she might be able to help with her too. It’s hard to know who to ask for help. Who to ask to help us find the right help. We’re just trying. And I hope we’ll find someone who is just the right person (and affordable) soon.

We tryed to call the family advisors to talk to them about what woulf happen if we went to them, but they just keep pushing us over to someone else and noone will help, just pass us on.. so.. we don’t really have much faith in getting any help from there.

I guess this is just life. Living your own story, finding your own path and trying the best you can. I know we will find the path.. but right now we feel lost, and we are just really looking forward to see a little light and find our way to where we are supposed to be.

To be continued in the new year..

We had a transfer interview with the daycare and the caretaker in charge of Ellies start in kindergarten. We talked openly about the challenges, how she is such a restless girl with sooooo much energy, that she has a temper of another world ..the daycare agreed and supported what we said. We also told them that we already knew we wanted her checked to know if she has a diagnosis at some point at that she was geneticly exposed for having ADHD etc.

The kindergarten caretaker seemed very sceptic, and since she never met Ellie at the time we thought it was probably normal.

Our kindergarten have two groups of kids, and after talking it through with the leader who knew Ellie from daycare too, we decited it was best for the kids to be in each their groups. This way they would have their own space but would still see each other during the day if they wanted to.

The startup went pretty smooth, Alfie was a big help and it was clear she felt safe with him there. He started to take on this new role as protecting big brother, a side of him we rarely saw before, it was so nice and we really felt proud!

She of course refused to nap, still does, but we figured that, it didn’t surprice us, but the caretakers were pretty surpriced when it didn’t happen even after a few weeks.

Every day when she comes home she’s exhausted, yet she wakes up every single night with nightmares etc.

Back to Alfie

Getting back after a holiday has always been really hard for Alfie since he started kindergarten and this time was no different. On top his baby sister started kindergarten too which left him in a new role and also he started in this new prescool group for the oldest kids from both groups.

All of this was/is just too much. He started acting more out at home, mostly on me and Ellie. He started getting more aggressive, he started to hit, push, yell, say awfull things that I would never have though he could even imagine to say.. it was and it is worse than ever. When I zoome out it’s clear as day that he is just filled up. He acts out because he has no idea what else to do. He’s trying so hard!

The minute we walk out the door from kindergarten to go home he goes from calm and happy to angry and aggressive. And it kills me. It kills me to see him like that, to not know what to do! And at the same time it is so so hard to be in this aaaaall the time. To hear you little boy telling you over and over that he hope you will die in horrible ways, that he wants to run away, wants another family or that he will do bad things to himself just to hurt me. I know he doesn’t mean any of it. It’s said in anger and helplessness. But it hurts like hell.

As he’s getting older it’s become clear that he need a lot of sleep. He’s 5 and he still gets put to bed 6.30pm and sleeps 12-14 hours every night. But after the summer holiday when things got worse he also started to get restless when it’s bedtime. He can’t find pease.

We recently got a heavy duvet for both kids from Babydynen.dk (ad) and so far it’s been helping Alfie a lot, both when he feels restless at night, but also when he comes home and get some of his major rage outbursts. We take him up, comforts him and when he’s settled we sit him with the duvet over him to watch tv or iPad to help him relax.

Ellie needs more time to get used to new things, and the duvet isn’t her best friend yet, but I have a feeling it will get better!

Service info about the heavy duvets:

They have a 14 days trial, if it doesn’t help you can return it. They also have a sibling discount, so if you buy two you will get 50% off the second one.

We do everything we can to help, keep it slow and simple at home, not to make plans, to prepare him (and Ellie) if we have any plans. But nothing seems to help. It feels like his world is slowly crashing and I can’t help but to think of the girl from our family who had to come so far down before anyone saw the how much she needed help.

Every single day feels like one long conflict.

And on the other hand we have Ellie. Those two are like night and day and they have so different needs.

Aaaaand back to Ellie

After one month in kindergarten Ellies primary caretaker suddenly just took off. One day we just got an email saying she had left her job without saying goodbye to anyone. And a few days later there were 3 new kids starting in Ellies group and she just got lost. Suddenly noone in her group knew anything about her and her struggles anymore. And it really affected her. She started to get more restless than ever, she wakes up beeing so upset every night and her tantrums went from 5 to 500.

The meeting

Back to the meeting about Alfie. We had the first meeting back in september.

We told them about our concerns both because of his behavior but also backed up by the knowledge we have about the genetic risk our kids are in. We shared the story about the girl in our family who hid behind a facade for so many years before her entire world just collapsed. We told them that we have no intention of ‘dragging a diagnose over his head’ and that we of course hope none of our kids has one, but also that if they have we want to know as soon as possible to be able to help them the best way we can. We know that Alfred is Alfred, and no diagnose can change who he is! But he’s starting scool soon and that will require so much for from him. We’re concerned that he might not have the energy to both start something new, try to be social (which both requires a lot from him) and at the same time have energy to focus on the learning part. He is a smart kid, and I’m not worried he can’t handle the assigments, but it would be so much easier to know if he has any special needs we need to consider and work in to his and our everyday life.

Their reaction wasn’t what we dreamed of, but we knew before we started this, that even getting them to diagnose him would be a long and hard fight. We’ve read about and talked to people who went through this with kids in much worse situations than ours, and even then we learned that a lot of parents actually had to give op their jobs just to come through and fight for their kids.

They basicly kept telling us that until it was worse they didn’t think it would be relevant to check him for any diagnoses.

We just sat there and looked.. so.. we have to wait for our son to feel worse before you want to do anything? It seems so crazy!!

The caretaker from Alfies group that attended the meeting was so supportive. She was the only person in the room who made us feel understood. She kept saying things like ‘Maja, correct me if I’m wrong, but I don’t feel like you understand what Maja is actually saying’ or ‘okay.. but this doesn’t really answer the question about if he can get checked for a diagnose’. She was such a support and I don’t know what we would have done without her in this.

It ended up with a suggestion that they would come watch him in kindergarten for a few times and then they would make a profile that should tell us more about his stragegies. After that we should meet with the psychologist and after that we all would meet together again.

When I picked up the kids that afternoon I pulled the caretaker aside to tell her thank you for beeing so understanding and supportive. She just looked at me with a sad face and told me she’d been through the exact same thing with her daughter years ago, and that she knew what a struggle we have in front of us and what a nightmare this process could be.

We kept in touch and we would talk almost on a dayly basis with the primary caretaker about how things were going.

And it wasn’t going well. His outbursts got worse and after a few weeks there was a really ugly episode that ended up with Alfie giving me a bloodnose. We both ended up crying and I knew he felt so bad, he never ment to do it, but he just couldn’t control himself.

After that our caretaker advised us to call the psychologist. We had another 3 weeks before our meeting and with the way things escalated she thought it would be best if we talked to her as soon as possible. And we did.

The psychologist adviced us to make a reporting to the local authoroity and have family counseling come to our home and watch him. We explained that we didn’t thought that would work, because he would put on his ‘mask’ just as he does in front of family and friends and as he do in kindergarten. But no matter what we said it just felt like she put all responsibilities on someone else. She even said that if they didn’t see anything in kindergarten it was out of her hands.

It was so frustrating. How about all the things we told them? Didn’t they believe us? And on top of that the high genetic risk.. wasn’t any of this enough for them to at least consider getting him checked?

And back to Ellie again

Back to Ellie.. Last year she started to complain that her stomach hurt. It got worse and she would say it like 20 times a day. We took her to the doctor who refered her to a childrens doctor, but she didn’t find anything and said it was probably just constipation. It came and passed a lot during the next year, but then during the summer it started to get worse. And on top she would tell us aaaaaaall the time that she was hungry. She cried and cried when we told her she couldn’t have any more food and it was frustrating for both her and us. A few times she even vomited because she had too much food. My husband and I started to wonder if she might have problems to feel when she was full. And so we took her to the doctor again a few weeks ago. She checked her and again, she didn’t find anything. Then she started to ask if she was always this restless and I explained our situation to her. She told me she didn’t think Ellie had any pains or was hungry, but that her restlessness could cause her to say or even believe it. She though we should get her checked for a diagnose. My first though was just ‘no.. no I can’t do that now too’. I am so tired from this. It feels like it just never ends. And having just a little taste of how it goes with Alfie just made me scared to do it with one more kid at the same time. But I knew she was probably right, and so the next day I talked to a caretaker from Ellies group, told her what the doctor told me. She was just another sceptical person, thought it was exaggerated and that it came out of the blue. And all I could think was ‘Well of course you do, you know nothing about Ellie’. Because when Ellies primary caretaker just took off noone knew anything about her anymore. Again, I felt frustrated!

Next day I talked to another caretaker from Ellies group, she was supposed to be her new primary person, we had asked to be given a new one since Ellie had some history that we would like to be able to talk to someone about. She was very sweet and understanding, had been reading up on Ellies files and I thought ‘okay, maybe it’s not that bad after all’.. until I picked her up that afternoon and the first caretaker I told about our visit to the doctor told me that I should not talk to anyone else about this and that she was the person who handled these kind of things because she had a higher education – she was clearly offended. It felt like it was all about her honor.. And I felt like telling her a thing or two, but I didn’t.. instead I figured if she was the one who was gonna help us through this I needed to be on good terms with her. I tried to get back on the subject and ask what she thought we should do, but she just changed the subject and walked away. Great.

To be continued..

I remember when we had the introducing talk with the daycare, where we told them about her, what kind of girl she was. We told them that she was a girl with a lot of energy, she had a hard time falling asleep and she was often really restless. I remember the understanding words with and undertone of ‘we have had so many kids here, of course we can get her to sleep’. Of course we also talked about what a caring and loving little girl she is, and how impressed we are to see how she always think of others even at such a young age. And she remains that way!

Days passed, weeks passed and they still couldn’t do it. She wouldn’t sleep, and there were so many days where I had to pick her up because she got so upset when they tried to put her down they didn’t know what to do.

After about a month we had a meeting with the daycare. We expressed our concerns about her not sleeping. What would it do to her to loose that much sleep? Was something wrong? How could we help her?

The daycare staff mentioned that they have noticed she was very hybermobile and that she would often do things that were dangerous and too hard for a two year old.

We decited together that we should see a Physiotherapist. She was supposed to help us figure out if we should try a heavy duvet (in Denmark the daycare needs a Physiotherapist approval and guidence to use them in daycare) and if we should do anything about her beeing hybermobile.

We went there for a few months. It was a young girl, fresh from school and I could feel she wanted to help, but also that she didn’t had a lot of experience. She concluted that Ellie was very hybermobile and told us that sometimes that causes restlessness because it’s harder to feel your body when you are hybermobile. We got some exercises that would be good for her and that was pretty much it.

After about 5 months she finally started to sleep in daycare! Just like that. Maybe it was just how long it took for her to get used to the new routine, because when it finally happened she slept every day in daycare since then. The strickt routines was definitely something that meant a lot to her!

While all of this was going on I decited to start my own business. Lately I had more photo jobs, and it seemed like the best solution for our family that I could work from home and manage my own time. This way I was still able to give the kids short days and days off, and I knew they needed that!

After Ellie started daycare Alfie got worse. He started to act more out psysicly at home, mostly on Ellie and a few rare times on me. She’s always been a strong girl, so she mostly just took it, but my husband and I was worried. Were this what it was like for all parents? Did all kids feel this worn out after a day in kintergarten? He is our first child, we never tried anything else than what we have, so we kept thinking it was probably okay. But it kept getting worse.

Next fall we decited to talk to the kindergarten. Ask them if everything was okay over there, if they had seen anything unusual in his behavior or anything like that. We wanted some anwseres. They told us that he was a bright kid, far along for his age. He was a quiet boy, didn’t attend any wild games, mostly played with the youngest children and often took ‘breaks’ where he would go somewhere alone to play quietly with a car or something like that. They also told us that they had asked him why he would get so upset when we dropped him off and that he told them that he didn’t like it in kindergarten because there were so many people, and that he liked it more at home because it was more quiet.

We asked in to that last part, if that was to expect from a 4/almost 5 year old, and they didn’t seem to think of it as a problem. We thought we were probably just over worried so we didn’t say anything else.

A few days after our meeting we had an ‘incident’.

We were at my parents in law, the kids were sitting on the floor playing and we were sitting around them talking while my father in law was trying to fix the speakers. Suddenly the music started very loud, and he instantly turned it off. You know when a high sound like that suddenly appears, you have a quick chock, and we all did. Ellie just went back to playing after at short look at us, but Alfie..

..he started shaking. Then he screamed. Or more yelled. He first threw around all the toys around him while he was yelling, and then he clenched his fists really tight. I ran to him at picked him up, hugged him, and he just kept yelling, screaming, shaking and the tears were running down his little face. It kept on like this for maybe 30 seconds or a minte, I’m not sure, it felt like forever. When he stopped we all just looked at each other. What happened? His grandparents tried to cheer him up but he just talked back really angry. Then they left me and Alfie alone, and I tried to talk to him. What happened? He said he was angry with his grandparents, and he clearly blamed them for putting him in this situation. That was how he felt. Like they did it to him. I said I was sorry he felt that way, and tried to explain that they didn’t do anything (at least not on purpose) and that the loud sound was just an accident.

He had been showing signs of not liking loud noices for a while, but never like this.

When we got home and the kids were sleeping my husband and I talked it over again, and we decited to talk to the kindergarten staff again, come clean, tell them about our worries and this episode.

At first their reaction was that is was quite normal to get scared from loud sounds, but we insisted this was not a normal reaction. Then they told us that they really only saw a sensitive but very bright kid, but after telling more about what was going on at home they seemed to understand more and more.

After this meeting we decited together that my husband and I had to make a reporting about our concerns which would allow the kindergarten to bring Alfie up on a interdisciplinary meeting with a special need caretaker, a psychologist, a family Consultant and a few others.

They did, and decited we should have a meeting with one of the caretakers from kindergarten along with a special need caretaker and a psychologist. Because of Corona if wouldn’t be anytime soon, so we waited around 4 months for the meeting.

Meanwhile the summer holiday came, and after that Ellie moved up to kindergarten.

To be continued..

I remember the exact place I was when he called. ‘I got diagnosed with ADHD. He want me to start take medication for it.’

I tryed to stay calm, asked him how he was feeling about it, and he said he was feeling okay, and that he had probably known for a while. Then I felt this wave of relief, a feeling that maybe things would get better, easier for him and for us now.

Then he said ‘our kids have a 50% risk of having it too.. and also bigger risk to autism and stuff like that’ . I looked down at my little boy and my baby girl and i froze. I quickly ended the call and did everything possible to keep my tears back. My brain was exploding, I kept thinking all those ‘what if’s.. what if the kids had something, what if my selfless wish to have kids was the reason they might have to go through a life with so many obstacles.. what if they would suffer more than their friends.. what if, what if, what if.. then I decited to call my mum.

I told her about the diagnose and then I told her that the kids were in pretty high risk too.. and then I cried. Right there in the middle of the street in front of my kids and everyone else passing by. She tried to comfort me, and to tell me that this was good, and if they were to have a diagnose we were now in a much better position to help them, to be aware, to understand.

I tried to pull myself together, I didn’t want to come home like this, I had to be strong for my husband now, not the other way around.

This was shortly before Ellies 1st birthday. She had shown do be an energetic girl very early on, and around her 1st birthday we started having trouble putting her down for her nap.

Alfie was 3,5 years when we ‘took his nap away’ and by then he would still sleep for hours on his nap. So it didn’t feel right that she would already not need a nap.

At the same time Alfie moved from daycare to kindergarten. I didn’t though it would be hard for him, he never had any issues going to daycare, getting dropped off etc. But that completely changed when he started kindergarten.

The next year was really hard. My husband started taking medicine for his ADHD, and he didn’t respond well. His doses were often increased. He started sleeping worse, feeling worse and he just really didn’t feel well, I could tell that by looking at him for a second.

After a few months it turned out he had been overdosed and he was cut back. It helped a little but not much and he was miserable.

Meanwhile I tryed my best to take responsibility for the kids and our home. I slowly started to pull away from my husband, we had so many conflicts all the time, and I was just too tired, I couldn’t handle it. My husband had to fight his own battle, so I felt that I had to do all the rest and definitely not cause any further problems for him. I began to feel really really lonely. We were just two people living under the same roof. I didn’t have the energy or the conscience to go anywhere without the kids, because I knew it was too stressfull for my husband to have them alone.

The next spring I couldn’t do it anymore. I talked to him, I cried and cried and told him I was exhausted. I couldn’t go on like this. He was hurt. He felt like it was his fault, that I was blaming him. I understood, but I was so frustrated because all I wanted was to help him. After that we had a few deep talks.

He started to take a different kind of medicine and things got better. He was more attentive to help in our home, and some of the problems we had that were still there felt easier to talk about along the way because we did talk about it. We got better, together, closer.

Ellie was still struggleing to sleep, both her nap and the evening tuck in’s were a nightmare. We both felt frustrated about it, and at the same time we had Alfie who was mostly really easy, but also really much in need of us, beeing close and taking things slowly.

He couldn’t handle to many plans and was easely overstimulated. The drop off in kindergarten remained a nightmare, and Corona rules did not make it any easier for him. Most days the caretakers would have to pull him away from me with force while he was screaming (not crying, screaming), kicking, hitting and yelling ‘mummy don’t let them take me, don’t walk away from me’. I was devastated every day. He had a great time during the day, thank god, but he also had an inner clock knowing when I would be back, and every day when I came he would stand with his back on by the fence when I came for him.

His days in kindergarten was short and I often gave him a day off because I was still home with Ellie. But the days away took out all of his energy.

Then Ellie started daycare..

To be continued..

I have been thinking for so long, going back an forth. On one hand I really felt a need to share something about life behind the squares with everyone around me.. on the other I didn’t feel it was right for my family, my kids.. especially now that everything is still so unknown for us.

But then I got to think.. what if there’s someone else out there going through something like this? Like us. Like me. Feeling what I feel like a lot of days?

..Like a crappy mum and wife, lonely, lost, scared, worried, frustrated and somehow so far from the person I thought I could be.

And really, I would never say or do anything to hurt my family! This is in no way an attempt to put them out there for people to use it agains them. But I also want awareness, to be able to talk openly with them and everyone else we meet during our everyday and our life. To be able to tell others in similar situations that they are not alone. And maybe even find someone who’s a little further along this journey than we are right now to talk to.

The beginning

I’m not sure I can pick a time where this started, but I know when diagnoses became an official part of our lifes for the first time.

It was back in 2016. I was pregnant with Alfred. We got word that a 12 year old family member was admitted with a mental breakdown. It was a horrible time for both her and her close family and it touched everyone in our family very deeply. For almost at year she was admitted before she was finally diagnosed with autism.

12 years. It wasn’t like her parents didn’t tryed to do something in those 12 years, they did! But noone did anything, because noone seemed to think anything was wrong. She is such a bright and clever person, and she had gone through life trying to copy everyone around her. That’s how she got through it all that time, and noone looked close enough to see through it.

She was released to get her diagnose, she could finally relax and just be the beautiful person she’d always been underneath the mask.

I think this experience was what put the first serious seeds in my husbands mind to get some answers. His entire life he had been called nicknames refering to actual diagnoses, I’m sure they didn’t mean anything by it, but to him it did, because it struck a nerve. He felt different and somewhere deep down he kept wondering if there might be a reason. How can you know if you are normal when all you really know is your own percepton of the world?

When Ellie was born things started to escalate for my husband. He was so stressed and he got worse and worse. I kept trying to talk to him about the fact that men actually have post partum depressions as well as women. He refused but he felt that he wasn’t well and after a while he went to his doctor amd explined everything. She send him to a psychiatrist and he started to meet with him very often. One day he came home and asked me to write one page about what I thought was different about him than other people. I just looked at him like ‘what???’.. I mean.. what!!! His psychiatrist that I never met asked me to write something about my husband for him to use. My husband told me he didn’t had to see it, but I couldn’t do that. That would only make it feel even more awkward. But it was a hard thing to be asked as a wife, it felt like a betrayal, but I knew it was for his best.. So I did it, I wrote it. Said some things I never had the heart and courage to tell him before. And it hurt. He acted angry, but I knew it hurt. And I felt so powerless to help or do anything for him.

A few weeks later I was out on a little walk with the kids. Then my husband called me…

To be continued….