Intervista ad Amedea Pedrabissi: mamma in trincea. Parte II.

Oggi continua il racconto, iniziato ieri, di Amedea. Cosa succede quando i ragazzi con ADHD raggiungono i 18 anni? Chi li tutela?

Continua la lettura.

Superata la maggiore età, diagnosi o non diagnosi i nostri ragazzi  diventano trasparenti: nessuna tutela, nessun riconoscimento della loro disabilità, solo una certificazione di invalidità (legge 104) potrebbe fare la differenza.

Le leggi per gli ADHD funzionano sino ai 18 anni poi il buio.

Al momento dell’iscrizione di Gabriele al Conservatorio mi viene chiesto di allegare, se posseduto, un certificato o quant’altro che attesti una qualunque disabilità e mi viene anche fatto il nominativo dell’insegnante di riferimento perché,finalmente, anche il Conservatorio come alcune Università si era dotato di un referente per le disabilità.

Posso solo dirti che nessuno ha mai letto la diagnosi di Gabriele allegata alla sua iscrizione,  nemmeno il Direttore!, con il quale avevo anche avuto più colloqui, e durante uno di questi,  dopo due anni di porte sbattute in faccia e mail senza risposta, mi disse un po’ spazientito “ma insomma signora cos’è questo ADHD?” mentre la referente per le disabilità era latitante.

Io e Gabriele ci siamo sentiti dire in più occasioni, velatamente, ma nemmeno troppo, che io rompevo le scatole e che lui non sarebbe mai riuscito a superare gli esami. In realtà qualche esame Gabriele lo ha superato, facilmente quelli a lui più congeniali con estrema difficoltà qualche altro e poi inevitabilmente alla fine del primo anno si sono cumulati. Lui si è stressato tantissimo, io non riuscivo più ad aiutarlo molto in queste materie per me sconosciute. Ci ho comunque provato e così ho rinunciato, prima ancora di perderlo al secondo lavoro che avevo trovato. Si trattava di una sorta di part-time, ma comunque insostenibile.

Nonostante tutti i miei sforzi Gabriele non ha retto e questa volta ci è voluto un ricovero in psichiatria, e parlo della psichiatria adulti di Cuneo: un ricovero in day-hospital: lo porto al mattino e lo vado a prendere alla sera. Gabriele si ristabilisce e lui stesso vuole ritentare con il Conservatorio ma dopo pochi mesi del secondo anno abbandona.

Purtroppo non in tempo: sta di nuovo male. Entra in una fase che gli specialisti definiscono fobica. E’  pieno di paure irrazionali:

  • non riesce a stare da solo
  • ha paura che tutto scoppi
  • ha paura che mentre cammina cadano oggetti dai palazzi
  • ha paura di ogni insetto
  • ha paura persino dei gatti di casa
  • non resta in cucina quando faccio da mangiare perché pensa che scoppi il forno….

Comincia così una cura molto lunga fatta di forti sedativi che lo faranno dormire molto in una prima fase e piano piano lo tranquillizzeranno,  solo dopo circa un anno e mezzo Gabriele ritorna a stare veramente meglio e a riprendere solo i suoi farmaci per la concentrazione e gli stabilizzatori dell’umore, e comincia un percorso di psicoterapia.

Nel frattempo, visto che non si può stare senza far nulla e dato che lui continua a sostenere che vuole cantare cominciamo un percorso di studi di canto e pianoforte privato in modo da non interrompere la sua crescita in questo campo e anche perché riteniamo che questa sia ancora la sua unica competenza ma soprattutto la sua ancora di salvezza.

E siamo arrivati ad oggi.

Amedea e Gabriele

Oggi lui segue questo percorso privato, compare in qualche concerto con piccole parti da solista, ogni tanto suona o accompagna in qualche rappresentazione teatrale, fa parte del coro lirico di Cuneo, ma è chiaro che tutto questo è un cammino molto lungo che soddisfa e a volte entusiasma Gabriele ma spesso viene da chiedersi se non sia anche il caso di vedere cosa offre o offrirebbe il mondo del lavoro a ragazzi come Gabriele.

Quando ho cominciato a pensare a un possibile lavoro per Gabriele in effetti mi sono spaventata, lui non ha altre competenze se non le sue specifiche, inoltre presenta tutti i tratti caratteristici degli ADHD è distratto, disorganizzato, disordinato, dimentica le cose, dimentica o non comprende completamente le richieste, non si rende conto del tempo che passa, si stanca facilmente.

Mi confronto con una mamma (Cinzia Corradi) che ha già vissuto queste esperienze sulla sua pelle e mi conferma che, poiché anche suo figlio presenta questi tratti, ogni qualvolta è riuscito ad ottenere un lavoro lo ha perso nel giro di niente e mi conferma, voci già sentite, che per poter ottenere un qualche lavoro con delle tutele questi ragazzi devono riuscire ad essere inseriti nelle liste protette della legge 104, ossia essere riconosciuti come invalidi.

La cosa non mi entusiasma e provo ad informarmi da un altra mamma che mi fornisce alcuni riferimenti. Mi informa che a Cuneo esiste l’associazione Mente in Pace che si occupa di persone con disturbi mentali e che dovrebbe avere uno sportello per informazioni presso la psichiatria. Anche lei sottolinea il fatto che non avendo certificazioni di handicap/invalidità non sono possibili percorsi di inserimento lavorativo protetti. Mi consiglia inoltre di provare anche con i servizi sociali ma non c’è niente di certo.

Insomma allo stato attuale non mi risulta che ci siano associazioni o strutture (in zona) che possano aiutare famiglie che come me hanno figli con disturbo ADHD per l’inserimento nel mondo del lavoro

Questo disturbo è sconosciuto,  anche poco conosciuto durante il percorso scolastico, ma, per fortuna, ci sono leggi che tutelano i nostri ragazzi durante quegli anni, dopo di che è come se raggiunta la maggiore età il disturbo non ci fosse più: questi ragazzi vanno incontro al mondo del lavoro, alla vita vera, al pari degli altri, ma loro non sono pari agli altri, hanno delle oggettive difficoltà che però non vengono più riconosciute né tutelate.

Questi ragazzi che durante l’adolescenza spesso sviluppano, come il mio, disturbi dell’umore di vario tipo: dopo aver sopportato e superato frustrazioni e insuccessi scolastici si trovano ad affrontare una realtà che li vuole abili, competitivi, pronti, altrimenti vengono scartati e così le loro frustrazioni, con tutto quello che ne consegue, aumentano.

Sono iscritta a un gruppo facebook e a un paio di chat sull’ADHD e leggo spesso di mamme con bimbi di 6,9, 14 anni ancora alle prese con i problemi scolastici, le note sul diario, le riunioni con le insegnanti, i libri smarriti, le interrogazioni programmate non rispettate. Vorrei tornare indietro nel tempo quando quelli mi sembravano problemi enormi e invece sono qui alle prese con un ragazzo di 23 anni del quale non riesco nemmeno ad immaginare il futuro, inserito in un mondo che per la maggior parte non conosce nemmeno l’esistenza del suo disturbo.

Un ragazzo che allo stato attuale tutelo solo io e che vedo spesso soffrire perché, non dimentichiamolo mai, hanno un disturbo ma non sono stupidi, anzi, sono perfettamente consapevoli e soffrono per la loro incapacità di vivere e programmarsi come gli altri, per non riuscire a portare a termine un progetto, per non riuscire a concentrarsi adeguatamente su qualcosa, per avere una mente sempre confusa e così via.

Non parliamo poi della difficoltà che si incontrano quando dalla neuropsichiatria infantile si passa alla psichiatria adulti.

Circa un anno fa sono stati istituiti nuovi centri di riferimento ADHD nelle varie psichiatrie locali e uno di questi è a Cuneo. Da quel momento Gabriele è stato preso in carico lì. Il centro di riferimento ADHD di Cuneo presso la psichiatria adulti che è l’unico che può solo dispensarmi tutti i farmaci di cui necessita Gabriele, sia quelli che prima mi passava il centro di Savigliano sia quelli che gli vengono prescritti dalla mia dottoressa di base, sempre dietro presentazione di piano terapeutico.

Peccato che questo sistema, più comodo, nato più o meno a dicembre del 2017 ad oggi ancora non funzioni.Ci sono voluti mesi prima che la farmacia ospedaliera venisse rifornita dei farmaci che prende mio figlio, ma nel contempo io non potevo più farmeli prescrivere dalla mia dottoressa. Un assurdo in cui Gabriele ha rischiato di rimanere senza cura. A volte poi  capita che l’unica dottoressa abilitata a prescrivere i farmaci sul ricettario stupefacenti sia assente per ferie o altro e non potendo chiedere la ricetta anzitempo si rischia nuovamente di rimanere sforniti di farmaci.

Insomma la macchina che hanno voluto creare non funziona ancora per niente, inoltre in questi nuovi centri ADHD non mi risulta, ma io parlo per Cuneo, che ci sia più di uno psichiatra preparato sulla materia, insomma un deserto.

Credo di aver risposto a tutte le tue domande, spero adeguatamente.

Avrai certamente capito che per cercare di seguire al meglio mio figlio ho rinunciato a tutto: non ho più un lavoro (ad oggi mi arrangio con piccoli lavori presso famiglie o anziani, che mi portino via poche ore nel corso della giornata e non in tutte), non ho una vita sociale (un paio di amiche e nulla più). Quando Gabriele entra ciclicamente in crisi a causa del disturbo bipolare mi sento come agli arresti domiciliari. Tutto questo anche perché sono una donna sola,  mi sono separata e mi sono trasferita anni fa proprio per seguire Gabriele nei suoi studi qui a Cuneo, sono figlia unica e mi è rimasto solo un anziano padre.

La domanda che spesso mi faccio e che mi angoscia è cosa sarà di Gabriele domani, quando io non ci sarò più ma purtroppo i suoi problemi ci saranno sempre.  Lui e molti ragazzi/e come lui,  nonostante l’età ancora non sono autonomi nell’assunzione dei farmaci: sbagliano o dimenticano, non sanno gestire il denaro, non ne conoscono il valore. Gabriele riuscirebbe a spendere in cose futili nella stessa unità di tempo sia 10 euro che 100 o 1000.

E’ fragile, facilmente plasmabile e bisognoso di tutela almeno da un punto di vista patrimoniale altrimenti potrebbe perdere tutto quel che possiede in un giorno. Mi chiedo quali tutele debba mettere in atto per garantire il suo futuro senza dover per forza passare dalla strada dell’interdizione.

E’ un pensiero che mi assilla ma peccato che di tutto ciò non trovo traccia nel gruppo facebook di cui faccio parte o nelle chat, ma è possibile che non ci abbia pensato ancora nessuno?

Questi ragazzi, con le loro fragilità, Gabriele incluso, sono facilmente attratti dalle compagnie sbagliate e predisposti all’uso di sostanze perché sono facilmente influenzabili e hanno scarso controllo degli impulsi.

Quindi una cosa ho imparato in questi anni è prendere la distanza dalla leggerezza con cui si danno giudizi negativi su famiglie di ragazzi che hanno compiuto un qualche crimine  (almeno in alcuni casi) perché spesso mi chiedo come fa una mamma sola come me, o anche una coppia, ma che deve necessariamente lavorare tutto il giorno e stare fuori casa a seguire un figlio con un disturbo come quello del mio.

Come fa a seguirlo nell’assunzione dei farmaci, come fa a controllare quello che il ragazzo combina, come fa a cercare di trattenere e a correggere i suoi atteggiamenti sbagliati se neanche è presente per vederli? Chi ci aiuta? I servizi sociali? Sai bene quanto me che non bastano.

Credimi Anna il problema dell’ADHD adulto è un grande problema che meriterebbe tutta l’attenzione e la tutela che ancora non ha.

Ringrazio infinitamente Amedea per questa testimonianza che è insieme anche una denuncia e lascio a voi tutte le considerazioni.

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