hulpverlenersmoe.

Hij is hulpverlenersmoe. Dat is het eerste wat bij me opkwam toen ik hem zag kennismaken met zijn fysiotherapeute. Mijn autocorrectie zet nu een dikke rode streep onder het woord. Een snelle zoekactie op google geeft aan dat het woord toch wel degelijk bestaat. 

Ik maak kennis met Sem. Nee, geen echt kind maar een virtueel kind. Een kind dat is vastgelopen in het onderwijs maar wel goed kan leren. Een virtueel kind dat sociaal emotioneel gezien wordt overschat en cognitief onderschat. Ze noemen dit een sociale beperking. Dit zegt het OPAZ, ondersteuning passend zorgaanbod. De overheid formuleert het ietsjes beter en noemt het: vanwege zijn manier van denken en zijn gevoeligheid voor prikkels. Een virtueel kind dat na heel veel hulpverleners te hebben gezien, nu geen hulpverleners meer wil zien. Onder het kopje kennis en expertise komt er eerst een viertal autisme kenniscentra naar voren rollen. (https://www.informatielangdurigezorg.nl/sem /https://www.opaz.info/sem )

Mijn zoon heet geen Sem en is ook niet Sem. Hij is wel vastgelopen en vooral hulpverlenersmoe aan het worden. Ik zie het steeds vaker gebeuren. Het is schijnbaar een subtiel proces, want ik weet niet meer precies waar mijn open, sociale en nieuwsgierige mannetje is overgegaan in teruggetrokken en ietwat mensenschuw. Het kennismaken laat hij tegenwoordig liever achterwege. Het is een proces wat ik lijdzaam moet aanschouwen. Hij kruipt weg achter mij. Hij kijkt niemand meer aan, zeker geen nieuwe gezichten. Wil niet meer echt meedoen en alles moet uit de kast getrokken worden om hem wel mee te krijgen. Ik snap dat men op den duur autisme zal gaan zien. Je bent wat men van je vindt. 

Maar hij is geen autist. 

Ik moet gelijk denken aan een stuk wat ik laatst las over onwillige ouders. Het ging daarbij over doorzettingsmacht en dat is dan weer een term die in het leven is geroepen om thuiszitters weer naar school te krijgen of zo. Ik heb het geluk er nog geen kennis mee gemaakt te hebben. Het stuk ging er voor het gemak vanuit dat ouders onwillig waren om hun kind weer naar school te sturen. Ik heb het met kromme tenen doorgelezen en ik schrok er best wel van. Ik had er nog nooit van gehoord. En ik vraag me af waar de helpende factor zit in dit idee. https://www.verus.nl/actueel/nieuws/politiek-wekt-te-hoge-verwachtingen-van-doorzettingsmacht-bij-thuiszitters

Het stuk dat daar een mening over gaf, vond ik veel aangenamer om te lezen. Het ging om dit stuk: https://lichtblauwvoorjou.nl/doorzettingsmacht/

Ik vond dat een goed stuk, maar ik miste nog wel iets. Ik miste het kind. 

In mijn beleving is het voornamelijk het kind dat onwillig wordt, al zie ik het meer als een vertrouwensbreuk. De ouders kunnen niets meer doen dan meegaan met het kind omdat ze zien dat het zonder medewerking van dat kind, hulp toch niets uithaalt. Het is niet de ouder die naar school moet maar het kind. En dan kan ik hem best naar school sturen, omdat er een doorzettingsmacht achter zit, zelfs tegen mijn wil in, maar dan komt er toch weer een dag dat hij zijn jas en tas pakt en wegloopt. Dat heeft hij al eens gedaan, toen was hij 3,5. Twee dagen kleuterklas en hij dacht: dit is de peuterspeelzaal helemaal overnieuw! Hij deed zijn jas aan en zijn rugtas op zijn rug en liep aan. “Waar ga je naartoe?”, riep de juf hem na. “Naar het consultatiebureau”, riep hij toen ze een hand op zijn schouder legde. Als jullie me niet serieus nemen dan doen ze dat misschien wel op het consultatiebureau! Of misschien kan ik het consultatiebureau consulteren in deze zaak? Wat hij ook dacht, toen al was dit een oplossing voor hem en die oplossing wordt alleen maar makkelijker naarmate hij ouder wordt. Maar waar loopt ie dan naartoe als het thuisfront hem tegen zijn wil in naar school brengt? 

Mijn zoon is nu ruim een jaar verder, toe aan zijn derde school en heeft al veel gezichten voorbij zien komen. Gezichten die hem achter de schermen echt wel helpen, maar niet altijd op het tempo waarmee het voor hem zou moeten of met nèt niet de juiste aanpak. Maar meer nog zijn er oplossingen die niet kunnen. Wegen die we niet mogen bewandelen. Maar de wegen die we wel mogen bewandelen zijn vaak toch voor net iets andere problemen. 

Nu heb ik dus zo’n kind. Zo’n kind dat thuiszit. Zo’n kind dat onwillig aan het worden is, hulpverlenersmoe. Nu laat ie zich nog helpen, maar het wordt steeds moeilijker. Ik ben geen onwillige ouder en eigenlijk heb ik ook geen onwillig kind. Hij wil niets liever dan naar school. 

Ik ben een hele gewillige ouder die haar kind wil zien groeien. Onze insteek is niet veranderd. Onze insteek is altijd en nog steeds zijn welbevinden. Hij moet lekker in zijn vel zitten, niet meer en niet minder. Onze insteek is geen kind dat op driejarige leeftijd al leest of met 6 al klaar is met de basisschool. Onze insteek is geen VWO of doctoraal. Maar…..,als dat bijdraagt aan zijn welbevinden, dan wel. Als hij maar gelukkig is. 

Hij krijgt nu weer nieuwe hulp. Hulp die we eerder nog van de hand wezen, want er is fysiek niets mis met mijn zoon. Hij krijgt nu fysiotherapie erbij. Hij is 4 en cognitief 8 of zo. Er is niet echt een leeftijd aan te binden. Maar aan zijn lijf wel, dat is echt 4, bijna 5. Dat lijf kan wat elke 4 jarige kan. Het kan een pen goed vasthouden maar heeft echt nog minimaal een jaar nodig om te oefenen. Om te oefenen met binnen de lijntjes kleuren of een vloeiende a te schrijven. Hij is ook maar een gevangene van zijn eigen lichaam. Een lichaam dat eigenlijk gewoon 4 is met een hoofd wat al een jaar of 8 is. Daar kan hij niets aan doen, dat is niet erg en ook eigenlijk helemaal niet zo raar. 

Dus gaan we hem helpen om zijn lijf en hoofd wat dichter bij elkaar te krijgen. 

Maar, en daar zit de crux, de hulp moet nauw aansluiten om te willen helpen. En dit is waarom:

Hij moest hinkelen maar toen dat niet lukte, kreeg hij toch een duim omhoog. Een duim die ik liever niet omhoog zag gaan. Ik zag liever de waarheid, want mijn zoon ziet het ook, die waarheid. Hinkelen kun je nog niet, maar zullen we eens kijken of jij je dat lijf kunt leren? Wil je elke dag even met mama proberen te hinkelen? Dan doen we een experiment en kijken hoe snel jouw lijf dat onder de knie krijgt. Hij weet namelijk dondersgoed dat zijn hinkelen in het niets viel bij het hinkelen van de fysiotherapeut. De duim omhoog was als hart onder de riem bedoeld. Bedoeld om hem te laten groeien. Maar hij mist de nuancering. Het is een nuancering die hij hard nodig heeft. Een nuancering die het verschil maakt tussen groeien of niet. Het is een onwillige nuancering.

We kregen ook een advies mee. Hij moet op een sport zoals turnen of dansen om zijn spieren sterker te maken. Hij rent namelijk een beetje elastisch. Ik ben allang blij dat hij wil zwemmen. Daar heeft hij zich op toegelegd en dat doet hij dus. Ik kan hem naar een gymzaal sturen waar hij doodstil midden op het speelveld blijft staan, hopend dat de tijd snel gaat, maar daar gaat hij niet meer van bewegen. En als hij wel wil turnen, dan moet dat ook in zijn schema passen van therapie en herintreden op school en leren schrijven om je hoofd bij te houden. Oh en rust, hij moet ergens ook nog tot rust komen.

Ik kan mijn baan opzeggen zodat we tijd hebben om ernaast te gaan sporten, maar dan heb ik weer geen geld om die sport te betalen. En zoals het er nu nog voor staat, moeten we hard aan de bak anders kunnen we die therapie ook wel op onze buik schrijven. Dan moeten we meer gaan werken om die therapie te kunnen betalen want we hebben nog geen groen licht van de gemeente voor deze hulp. Hulp die er zeker moet komen. 

Maar als mijn zoon geen zin heeft om te huppelen, te schrijven, naar school te gaan of met een psycholoog te praten ben ik blijkbaar de onwillige ouder die niets wil. En dat klopt ergens ook wel een beetje. Ik wil niets meer, ik wil geen psycholoog meer of fysiotherapeut. Ik wil geen gesprekken meer met gemeenten of school. 

Wat ik wel wil? Ik wil mijn kind naar school kunnen brengen en weer ophalen om na het eten naar zwemles of turnen te gaan, dat is wat ik wil. Ik wil hem op woensdagmiddag naar een vriendje brengen in plaats van therapie of een psycholoog. Dat is wat ik wil en ik ben heel gewillig. 

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