Einen Platz im Leben finden

Grafik "Autismus er-leben"

Lass dich vom Autismus nicht unterkriegen!

Was geschieht mit und in einer Familie, die nach und nach erkennt, dass das neugeborene, geliebte Baby und heranwachsende Kleinkind irgendwie „anders“ ist? Eine Mutter mit einem heute fünfjährigen Sohn beschreibt die unterschiedlichen Phasen, durch die sie als Eltern in den ersten Lebensjahren ihres Kindes gegangen sind. Von der Wahrnehmung, dass etwas mit dem Baby nicht stimmt, über die Diagnose und automatisierte Informationssuche über Autismus, vom schwierigen Umgang mit den Reaktionen von Freunden und Verwandten, von Schuldgefühlen, Verzweiflung und fehlender Unterstützung, die zunächst in einem Rückzug aus dem „normalen Leben“ und Bekanntenkreis endeten. Doch nach einem emotionalen Tiefpunkt und schlaflosen Nächten kam die Wende: Schluss mit dem Verstecken, zurück ins Leben!

Mutig sein und für Lebensfreude kämpfen

Viel Mut und Kraft mussten die Eltern aufbringen, um nach dem Rückzug wieder hinaus in die „normale“ Welt zu gehen. Es gab Widerstände im Innen wie im Außen. Jede Familie hat ein Anrecht auf Lebensglück und Teilnahme am sozialen Leben – vor allem mit einem Kind aus dem Autismus-Spektrum. Es geht darum, sich das Leben Schritt für Schritt zurückzuholen und einen Platz darin zu finden. Eine Autismus-Diagnose darf nicht Freude und Glück einer Familie in Frage stellen oder gar zerstören, denn hinter ihr verbirgt sich genauso viel Schönes und Bereicherndes. Es lohnt sich, nach dem ersten Schock wieder aufzustehen und zu kämpfen! Und man ist nicht allein. Es gibt Unterstützung für Menschen im Autismus-Spektrum und ihre Familien – und Würdigung.

Don’t let Autism stop you

We – me and my family – are approaching our two-year-autism-anniversary. I know to many, two years is nothing, but for us, the first two years into our autism journey have been the most emotionally intense years of our lives which have been filled with grief, loss, tears, fights, laughter, guilt, acceptance, education, being broken and put back together.

Something was different

I always remember the moment I realised my son was different. It was a few months before he turned two, before visiting a close relative after not seeing them for six months. In those six months, a lot had changed. Our son was jumping continuously, still not speaking and how we would soon always hear, ‘not normal’. Driving to their home I felt the need to prepare my husband that they may say something we won’t want to hear about our son and after comforting me he assured me it would be fine. Oh, how he was wrong. It didn’t take five minutes until we were asked, what’s happened? He’s wrong, there’s something wrong with him.

After two hours of watching my relatives make their observations like he was under a microscope and talking to us like he was broken, I couldn’t handle it anymore and I left in floods of tears with my son. It wasn’t that I was in denial, at that point, I knew in my heart he wasn’t developing normally, even though the doctor told me it was all in my head several times. It was the fact that he was being looked at like he was wrong, like a broken toy that needed to be sent back. My heart was broken because I knew this would not be the last and only time he would face a reaction like this, and oh boy how that feeling was right. Since then we have had relatives and friends give that same look and ask what is wrong with him, and hear lines like ‘as soon as I saw him I knew something was wrong with him’. See, with autism, there is constant judgement and assumptions. I want to scream at the amount of times a medical professional has asked me whether I took drugs or alcohol during the pregnancy. I just thought what kind of woman do I look like?! (and if you’re wondering, no I did not!).

After the diagnosis

As soon as I got the diagnosis my reaction was systematic. I bought endless books, searched endless publications and tried to learn as much as I could about how I could support my son, and how I could teach him to talk and hear. This was probably the toughest time of my life as many autistic parents probably know so well. There were endless tears, worries, frustration at all the medical and therapy failures, and being overwhelmed trying to navigate what and how to do things. Through all of this, the one thing I always remember was the lack of support I got. I felt that close relatives distanced themselves, I can’t be sure why but I always felt the autism diagnosis for them was more of a death sentence and I felt so much guilt for this. Friends never seemed to say the right thing or react in the right way. I never understood why the simple question, “are you okay?” was never asked. Social situations with our son didn’t feel fun or comfortable like they once did. One day he was the cute baby everyone celebrated and the next day it felt like he was the social oddity. This along with the constant 3 a.m. wake-ups in the middle of the night – it didn’t take long for me to feel utterly broken. I just wanted to hide from the world and stay at home. Not because I was ashamed but because I was so consumed with love for my son. For me, he was still and always will be my perfect boy, my firstborn who is so precious and I just didn’t want the world to burst my bubble.

The turn

It didn’t take long for my husband to realise what I was doing which led to a conversation which would change everything. One night he just looked at me and said I can’t do this. We are not going to change our lives because of autism. We are going to carry on like we always have, he simply said. He refused for us to be imprisoned by autism. After a sleepless night thinking of the idea of carrying on with normality and analysing everything that my husband said I decided to be brave and that I had to be strong and face the world for my son. From that day forward play dates were slowly scheduled back into our lives and weekends began to be filled with normal family fun activities. We were not going to let autism stop us from living and making the happy memories every child and family deserves and if anyone was not happy with how our son jumped and vocal stimmed, well then f*ck you. My son might be nonverbal, but I am not.

However, we can’t just say that to autism to rid it away. I know for some, autism is their superpower but for others like my son autism is not so easy and at the moment life is filled with hurdles. We are not trying to cure autism but we are trying to equip our son to live his best life, to be able to communicate, be independent, to live the life he wants and most importantly to be happy. How will we achieve this? Well, we are still figuring things out and taking a step at a time. At the moment we are trying to make sure the word autism has a positive connotation at home so, after some Cam inspiration from Modern Family my husband has decided that we should say ‘yay’ after we use the word autism.

As we approach two years of autism, it’s still not easy but what family life is? We have so many more barriers to break, so much to learn and we are only at the beginning of navigating our way through the autism world but we’ve learnt nothing will stop us. As a family, together, we will not let anything hold our son back from being happy. We are not going to let him grow up thinking he is wrong, or broken. He is my firstborn, my only son, with a smile that lights up the room and oh boy, I love him so much.

Duale Autismus- und Familientherapie und Elterntreff bei Zephir gGmbH

Zephir gGmbH bietet für Kinder im Autismus-Spektrum und ihre Eltern/Angehörigen eine „Duale Autismus- und Familientherapie“. Alle sechs bis acht Wochen veranstalten wir außerdem einen Elterntreff, bei dem sich Eltern/Angehörige von Kindern im Autismus-Spektrum untereinander austauschen und gegenseitig unterstützen können. Sprechen Sie uns bei Interesse gerne an.

Miriam Vogt (Bereichsleitung), Tel.: 0159 – 06 14 52 81 oder vogt@zephir-ggmbh.de