13/02/2013 - la storia
Vorrei inventare una vita felice per mio figlio autistico
Ho raccolto la storia di
Tommy in un libro tra diagnosi sbagliate e drammi quotidiani
ROMA
Mio figlio Tommy nacque quando io non c’ero. Era il
1998, l’anno in cui Annalisa Minetti vinse Sanremo anche senza vedere. Io facevo
il Dopofestival con Chiambretti, Busi e Nino d’ Angelo. L’annuncio del lieto
evento in tv lo fece Piero, dal palco del Festival, dicendo per sfottermi:
«Somiglierà a Busi!». Mi andò bene, perché crescendo diventò bello come un
angelo, se non fosse che era autistico.
La diagnosi di autismo ai miei tempi arrivava
centellinata in decine di valutazioni, osservazioni, test e chiacchiere inutili
con dottori, dottoresse, psicologhe, educatori, che facevano domande a lui che
stava zitto. Il tema era in quale parte di un universo, che già allora capivo
molto poco conosciuto alle nostre latitudini, Tommy dovesse essere
collocato.
L’incertezza è già speranza e quindi in famiglia
arrancammo ancora qualche anno, confidando che avevamo un figlio strano, ma non
certamente autistico.
Venivamo rassicurati di valutazione in valutazione:
«Autistico? Che brutta parola… Ma li ha visti gli autistici? Non si accorge che
lui anche se non parla guarda negli occhi?». Così ci trastullavamo con l’idea
benevola che avevamo un figlio che galleggiava da qualche parte dello «spettro
autistico», che prima o poi sarebbe diventato quasi normale, al massimo qualche
problemino di relazione… «Ma chi non ne ha?». E con la logopedia avrebbe anche
iniziato a parlare, l’importante era crederci.
Passai così una decina d’ anni con l’ idea che avrei
avuto un figlio taciturno e molto selettivo nei suoi contatti personali. Tommy
alla fine era un bambino non troppo diverso da quei loquacissimi sfantumatori,
al cui servizio perenne vedevo molti miei amici e amiche. Anzi, se devo essere
sincero, a parte qualche fissa alimentare, qualche sua stramberia cui non
facevamo nemmeno più caso, ci eravamo abituati tutti a quel bambino che si
esprimeva con un vocabolario base di dieci parole, incomprensibili a chiunque
non fosse di famiglia.
Avevamo imparato a stare attenti a non lasciare in giro
oggetti che poteva mettersi in bocca, a sigillare ogni fonte di pericolo da
taglio, da fiamma e da elettricità, a mettere le serrature alle finestre, perché
non gli venisse la tentazione di fare come Peter Pan. Ci eravamo pure rassegnati
a tagli drastici alla nostra vita sociale: molti amici con figli coetanei si
sono gradualmente dileguati, forse temendo un contagio o forse solamente perché
quando i loro figli già leggevano Harry Potter in inglese il nostro sì e no
riusciva a dire il suo nome e un abbozzo fonetico che somigliasse al
cognome.
Mai ci siamo lamentati, anzi quel balzano figliolo era
il nostro oracolo, straordinario rivelatore di umanità latente nel nostro
prossimo. Poi Tommy è cresciuto, anche tanto, ora è un gigante riccioluto a cui
arrivo appena alle spalle. Il primo attacco epilettico è arrivato assieme alla
sua sfavillante adolescenza.
«C’è di peggio!», abbiamo pensato, mentre imparavamo a
reggergli la testa. Poi è cresciuto ancora e la sua esuberanza a volte può far
male a chi gli sta vicino.
Porto addosso i segni delle sue mani e dei suoi denti,
ne vado fiero come ferite di guerra, l’importante è che ancora io ce la faccia a
contenerlo quando gli prende brutta. La moglie ha abdicato da un anno; ha
ragione. Non può farcela, dopo che si è trovata a terra con una costola
incrinata, solo perché Tommy le voleva dare una carezza un po’ manesca. La madre
lo teme, anche se lo ama da morire, perché è sempre il suo bambino, pure le
volte che si mette a saltare e trema il pavimento.
Ancora ce la facciamo e siamo fortunati, perché possiamo
permetterci qualcuno che ci aiuti ad accudirlo. Un autistico non può essere
lasciato solo nemmeno un minuto… Anche se nell’età adulta nemmeno si potrebbe
più dire che è autistico, perché per lo Stato diventa un «matto generico».
Ormai la mia giornata la passo con Tommy accanto, anche
ora quando scrivo. Non c’è altra soluzione, non c’è nulla a misura di un
autistico cresciuto e ho deciso che me lo inventerò io. Per questo ho scritto un
libro per i tanti genitori rassegnati. Perché a me mio figlio sta bene anche
così. Vorrei solo potermi «inventare» per lui una vita felice, sono convinto che
sia possibile, basta crederci.
@@@@@@@@@@@@@
Voglio bene a Gianluca Nicoletti anche se non lo conosco di persona. Lui mi ha fatto l'onore di fare un commento sotto un mio post.
Lo ammiro da tanti anni nel suo lavoro. Da quando era in RAI con le sue logorroiche critiche televisive...
Provo dolore per lui, per Tommy e per la sua esausta madre.
Come mi colpì Franco Antonello, pubblicitario di successo, quando parlò del problema di Andrea, suo figlio, nella trasmissione di Daria Bignardi, così mi colpisce quello che lui scrive.
Ho letto il libro ispirato da Franco Antonello su sé stesso ed il viaggio d'amore con il suo Andrea, nella speranza di trarlo fuori dalla prigione dello "spettro autistico".
Spettro che significa tante cose, in quanto ancora non ci hanno capito molto, perché ogni persona che ne è affetta, pur avendo alcuni aspetti comuni, presenta comportamenti diversi.
L'unica cosa che sanno è che bimbi nati apparentemente sani poi iniziano a presentare sintomi autistici o dello spettro autistico e che sono in aumento.
Perché? Non sanno neppure questo. Si era pensato alle vaccinazioni, ad una reazione in soggetti predisposti che causa il danno. Ma è rimasta solo un'ipotesi, senza dati oggettivi.
275 commenti:
1 – 200 di 275 Nuovi› Più recenti»Un articolo struggente…..due frasi mi hanno particolarmente colpita:
“Porto addosso i segni delle sue mani e dei suoi denti, ne vado fiero come ferite di guerra”.
“nell’età adulta nemmeno si potrebbe più dire che è autistico, perché per lo Stato diventa un «matto generico»”.
La mia personale, modesta ed umile chiave di lettura è la seguente:
Un grande Padre, ricco di forza e dignità che ha accettato quasi con naturalezza “l’anomalia” di Tommy , tuttavia teme il momento in cui diventerà adulto poiché per lo Stato diventerà un “matto generico” ….
Gianluca sa che verrà il momento in cui non avrà più la possibilità di occuparsi del figlio e di proteggerlo. Nessuno di noi è eterno….
Il pensiero del futuro di Tommy senza più i suoi genitori accanto lo preoccupa , forse lo angoscia e allora vorrebbe potersi «inventare» per lui una vita felice…è convinto che sia possibile….. Basta crederci.
Gianluca , sono certa che troverà l’invenzione giusta per la felicità di Suo figlio…io ci credo, ci creda anche Lei!
Mi scuso in anticipo qualora mi leggesse e giudicasse invadenti e distorte le mie personalissime riflessioni. Non me ne voglia.
Con stima ed ammirazione
Quando si esce allo scoperto non si possono temere i giudizi altrui. Nessun problema se non quello che per me è il tempo di fare non più di pensare. Buona giornata
Gianluca Nicoletti
La risposta di Gianluca è per Silvia che credo l'abbia letta.
Per quanto mi riguarda ho saputo da mio marito che il libro sul "riccioluto" Tommy è uscito e stavo per acquistarlo dal sito di Gianluca Nicoletti quando ho visto che è edito da Mondadori ed io ho la tessera per una bella libreria Mondadori dove, a furia di comperare libri, ho accumulato un bel po' di punti. Dunque lo compererò da Mondadori Romanina.
Per chi ne volesse sapere di più sull'Autismo dal punto di vista scientifico, esiste un libro che comperai tempo fa, pagandolo euro 39,00, dal titolo "Uscire dall'Autismo: un approccio Biologico e Medico", autori Giulia e Franco Verzella, Maggioli Editore. Pur avendo fatto studi di Medicina (abbandonati a metà) l'ho trovato arduo e faticoso, però cerca, senza riuscirci, di capirne le cause. Più che altro è l'esplorazione scientifica delle varie ipotetiche cause e delle varie conseguenti cure: alimentari, disintossicanti, ossigeno terapia iperbarica ecc..
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