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.
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