Walk on, walk on,

With hope in your heart

And you’ll never walk alone

A lovely anthem that strongly represents the relationship Inspire sets out to forge with its families.

Along the years research has shown, that the level of support a person is surrounded by, is a powerful indicator of positive outcomes.  More in-depth literature, however, has provided evidence that the amount of support, may be less important, than the perception the person has of that support (Shin, 2002; White & Hastings 2004).  Meaning, that the recipient of support, needs to see that support as helpful, or else there is a risk that one will not be helping much.

With this in mind, I would like to share some of the daily emotions and concerns, I come across in my experience of working with families of autistic people.  By bringing forth these realities, I invite the readers to step out for a while, from their reality and try to put themselves in the shoes of these families.  This position inadvertently supports others and more importantly enriches oneself.

To give you some background, I take care of the family department at Inspire, and part of the service provision entails support services for our families.  Making sure of the quality of such service is important and therefore, I regularly ask our parents: “How does Inspire family services help you?” The most frequent reply I receive is: “I realize that I am not alone”.  When going through challenging experiences, knowing that there are people who can genuinely understand what you are going through, is of tremendous comfort. A safe space from where to build and maintain resilience.  Services such as our support group, provides parents with a place to rest their load, even if for a short while.  This community is not only a refuge though, but also led professionally to help caregivers process their emotions, such as shame, guilt, concerns about the future, hope and hopelessness.

From session to session parents share how many times they are judged and told that they do not know how to parent their child; their circling thoughts of whether they are doing something wrong, when their child melts-down, or has a tantrum; if they are meeting the needs of all their children, including those who do not have a disability; and probably the heaviest of them all, what will happen to my child when they are no longer around?; incessantly asking themselves: “should I burden his/her siblings with responsibilities of their autistic brother/sister?”  These are heavy thoughts, and to carry on with the day to day of life is a hard and complex task, which differs from one person to another.  There is no one size fits all solution, it’s about working on oneself, understanding one’s emotions, beliefs, hopes and more.  Making meaning of what one goes through, in a way that reflects and resonates with who he/she is; and understanding if these states are interfering unhealthily in their daily life and looking at what can be done to empower hopeful change in ones coping mechanisms.

Not to mention, that it’s not a linear process, these emotions can keep being experienced time and time again.  Triggered by even a look on someone’s face, a memory, or something they smell.  One can be having a good day, or a couple of good weeks and suddenly, everything comes crumbling down.  This is what we call the grieving process.  Feelings of anger, sadness, hopelessness, fear are all part of this process and each time it happens, one needs to start building the pieces back up again.  Tapping into resources, to take care of oneself and the relationships surrounding the person.  To start once again experiencing hope, contentment, strength and embracing the reality of one’s life.

My hope for families who live with autism is to remember that they are not alone, so please reach out.  Try and find helpful ways that keep you hopeful, this can vary for different individuals.  Some people find that spending time with significant others is helpful, others research and find evidence-based literature a good tool.  Engaging in meaningful conversations or finding time for healthy activities that can take their minds of their worries for a while.  I am aware that this is said a lot, “take care of yourselves”.  As human beings, our instinct is to push ourselves to the limit, in the pursuit of what we wish to achieve, but what’s the use of breaking yourself down, you and your family will surely not benefit from it.  When you are feeling low, IT’S OK!  These uncomfortable emotions are completely understandable to have and important to experience.  These moments make us evaluate ourselves and what we are doing, so we can take decisions that make sense to us and our realities.  Just make sure to be kind in the way you speak to yourself.  Converse with yourself in the same way you would talk to others who are seeking you for support and guidance.  Last but definitely not least, try to look beyond the autism of your child.  Build a relationship with him/her that is a source of healing and growth for all of you.  Therapy is an important need for the development of your child, but never underestimate the power generated by the significant connection you foster with him/her.

Imxi l-quddiem, Imxi l-quddiem,

Bit-tama f’qalbek

U qatt ma tkun qed timxi waħdek

Innu sabiħ li jirrapreżenta bi sħieħ ir-relazzjoni li Inspire tixtieq issawwar mal-familji tagħha.

Matul is-snin ir-riċerka turina li s-sapport li wieħed għandu madwaru, jindika possibilta’ tajba ta’ riżultati pożittivi.  Ma dan kollu, riċerka naqr’ aktar fil-fond, turina li l-ammont ta’ sapport jista ma jkunx daqshekk importanti, daqs kemm dik il-persuna tipperċepixxi dak is-sapport, bħala xi ħaġa utli (Shin, 2002; White & Hastings 2004). Dan ifisser li l-persuna li qiegħda tirċievi s-sapport, trid tarah bħala xi ħaġa ta’ għajnuna, inkella hemm riskju li fir-realta’ ma nkunux qed ngħinu wisq.

Għalhekk, nixtieq naqsam magħkom ftit mil-emozzjonijiet u t-tħassib li niltaqa’ miegħu ta’ kuljum, fil-ħidma tiegħi ma familji ta’ persuni bl’awtiżmu. Filwaqt li nipreżenta dawn ir-realtajjiet, niextieq nistieden il-qarrejja, joħorġu għall-ftit mir-realtajjiet tagħhom u jpoġġu lilhom infushom fiż-żarbun ta’ dawn il-familji. Din il-posizzjoni, involontarjament tkun ta’ sapport għal ħaddieħor u wisq iktar importanti, tirrikixxi lilna nfusna.

Ħalli nagħtikom ftit kuntest. Jiena mmexxi d-dipartiment tal-familja ġewwa Inspire u parti mis-servizz huwa s-sapport lil familji tal-klijenti tagħna.  Li nevalwa l-kwalita’ tas-servizzi tagħna huwa mportanti ħafna u għalhekk sikwit insaqsi lil ġenituri “Kif issibuhom ta’ għajnuna s-servizzi tal-familja ta’ l-Inspire?” Ir-risposta li l-aktar nirċievi lura hija: “Nirrealiżża li m’inhix waħdi”.  Meta wieħed jagħddi minn esperjenzi tqal, li jaf li hemm persuni li jistgħu jifmu ġenwinament dak li hu għaddej minnu, huwa ta’ wens kbir.  Spazju sigur fejn wieħed jista jibni, kif ukoll imantni reżiljenza.  Servizzi bħas-‘support group’ jiprovdi ftit serħan mit-toqol li l-ġenituri jkunu qed iġorru, anke jekk għal ftit ħin biss.  Dan l-ispazju muhiex biss refuġju pero’, huwa mmexxi professjonalment u jgħin lill-ġenituri jiproċessaw emozzjonijiet bħall-mistħija, sens ta’ ħtija, ħsibijiet dwar il-futur, it-tama u n-nuqqas tagħha.

Minn sessjoni għal oħra l-ġenituri jaqsmu kemm il-darba jiġu ġġudikati li ma jafux jieħdu ħsieb jew jiddixxiplinaw lil uliedhom; tberrin dwar jekk qedx jagħmlu xi ħaġa ħażina, speċjalment meta wliedhom ikollhom ‘tantrum’ jew ‘melt-down’; jekk hux qed jirnexxielhom jiprovdu għall-bżonnijiet ta’ uliedhom, inklużi dawk li m’għandhomx diżabilita’; u, probabilment l-itqal waħda, x’ser jiġri mit-tifel/tifla awtistiku/a tagħhom meta huma ma’ jkunux aktar f’din id-dinja, bla waqfien isaqsu lilhom infusom jekk għandhomx jagħbbu lil aħwa bir-responsabilita’ ta’ ħuhom/oħtom li huma affetti bl-awtiżmu.

Dawn huma kollha ħsibijiet tqal, u biex tkompli mal-ħajja ta’ kuljum mogħbbi bihom, hija biċċa tax-xogħol iebsa u kumplessa, li tvarja minn persuna għall-oħra.  M’hemmx soluzzjoni waħda tajba għal kullħadd, wieħed għandu bżonn jaħdem fuqu nnifsu, jiprova jifhem l-emozzjonijiet, it-twemmin, it-tamiet u ħafna aktar dwaru nnifsu. Jiprova jagħmel sens minn dak kollu li għaddej minnu, b’mod li jirrifletti dak kollu li jemmen dwaru nnifsu, u jiprova jifem jekk il-mod ta’ kif hu qed jgħix din l-esperjenza qedx tinterferixxi b’mod negattiv il-ħajja tiegħu, bit-tama li tispira bidla pożittiva fil-mod ta’ kif wieħed jgħix it-toqol tal-ħajja.

Irridu nsemmu wkoll, li din m’hix esperjenza lineari, dan ifisser li dawn l-emozjonijiet u ħsibijiet jibqgħu jiġu esperjenzati aktar minn darba.  Jistgħu jiġu attivati minn ħarsa li wieħed jimlaħ fuq wiċċ ħaddieħor, minn xi memorji, jew anke jekk jinxtammu rwejjaħ li jfakkruna f’xi ħaġa.  Wieħed jista jkun qed jkollu ġurnata tajba jew numru ta’ ġimgħat posittivi u f’daqqa waħda jitfarrak kollox.  Dan hu dak li jissejjaħ il-“grieving process”, il-mod ta’ kif wieħed jiproċessa n-niket. Emozjonijiet ta’ rabja, dwejjaq, nuqqas ta’ tama, biża, huma kollha parti minn dan il-proċess, u kull darba li wieħed jagħddi miċ-ċiklu, ikun irid jerġa jibni lura l-biċċiet li sfaw imfarka. F’dan il-mumenti wieħed idur fuq ir-riżorsi tiegħu, sabiex jieħu ħsieb tiegħu nnifsu u r-relazzjonijiet ta’ madwaru, u b’hekk wieħed jerġa jibda jħoss it-tama, il-kuntentizza, s-saħħa u jħaddan ir-realta’ tal-ħajja tiegħu.

It-tama tiegħi għall-familji li jgħixu bl-awtiżmu hu li jiftakkru li mhumiex waħedhom, u għalhekk jiftakkru joħorġu jdejhom għal għajnuna. Ppruvaw sibu modijiet li jgħinukom tħaddnu t-tama, dawn jistgħu jkunu modijiet differenti għal persuni differenti.  Xi nies isibu ta’ għajnuna, jqattgħu ħin ma’ persuni sinifikanti għalihom, oħrajn jipreferu jaqraw riċerka ppruvata minn sorsi ta’ fiduċja, konverżazzjonijiet profondi jew attivitajjiet posittivi li jistgħu jnessu anke għal ftit ħin it-tħassib li jkun għaddej mil-moħħ.  Naf li din il-frażi tinstema’ ta’ spiss, “ħudu ħsieb tagħkom infuskom”. Fl-umanita’ tagħna, l-istint tagħna hu li ninbuttaw lilna nfusna sal-limitu, fl-insegwiment ta’ dak li tant nixtiequ nilħqu. Imma x’inhu l-użu li tkisser lilek innifsek? La int u l-anqas il-familja tiegħek mhux ser tibbenefikaw minn dan.  Meta tkun qed tħossok ħażin, HUWA OK LI JIĠRI DAN! Dawn l-emozzjonijiet skomdi huma parti mill-proċess kollu, u huwa mportanti li wieħed jagħddi minnhom.  Dawn l-emozzjonijiet jġgħeluna nevalwaw lilna nfusna u l-azzjonijiet tagħna, u b’hekk nieħdu deċiżjonijiet li jagħmlu sens għalina u għar-realta’ tagħna. Biss ippruvaw kunu ġentili fil-mod li tkellmu lilkom infuskom, tkellmu bl-istess mod li kieku tkellmu lil xi ħadd li ġie jfittex lilkom għal sapport u gwida.  L-aħħar, pero żgur mhux l-inqas, ippruvaw ħarsu lil hinn mil-awtiżmu tat-tifel/tifla tagħkom. Ibnu relazzjoni ma wliedkom li hija sors ta’ fejqan u fejn wieħed jista jikber u jimraħ.  It-terapija hija mportanti għal l-iżvilupp ta’ wlied bl-awtiżmu, pero qatt tissottovalutaw il-qawwa li jista jitrawwem mil-konnessjoni li tiżviluppaw magħhom.