SOMETIMES you are totally oblivious to autism and all it entails, until it becomes a part of your life.
I will hold my hand up and tell you I absolutely was, I hadn’t a clue simply because it didn’t affect me.
I can see now, as I am still learning about it, that it is imperative to raise awareness and let others know what we, the families, are up against and also, more importantly, to let people know who truly support us, so that you can, in turn, share the knowledge with others in your lives who may be looking for help.
We personally spent so long fighting for information, the right services and help for our son. I was sending pleading emails which were ignored by the majority who were in a position to help.
People, even those closest to me, had no clue what it was like, they couldn’t relate. In their innocence, they downplayed it to try and make me feel better and also because their version of autism and the traits our son displayed were not on par, I guess.
You say “autism” and people think stereotypical Rain Man, or brain like a calculator, super intelligent, zero eye contact, no speech, consistently rocking back and forth and slapping their head off a surface, all these things that it is portrayed to be.
Yet autism has a HUGE spectrum, a child can have a few or 30 symptoms, each is completely different, no diagnosis is the same, and I found this all very hard to figure out, as I was in the depths of despair, reading into every little movement he had made or didn’t make, every interest he had or didn’t have, worrying about my son’s future, especially as we had zero help and I had no one to talk to about it.
So you then begin to create barriers and distance between you and social situations, family gatherings, meeting up with friends. It just becomes easier to stay at home where all is calm and if a meltdown arises it can be resolved in the comfort and safety of your home, where no eyes are staring, judging, and you aren’t embarrassed, while you are simply learning how to deal with these scenarios as they occur as it is all new to you.
The last thing you need is Tutting Tina or a passing comment like “a good kick in the arse is what they need” to make you feel fantastic about the decision that maybe took you about a day to make, to just simply leave your house and go to the shop and it definitely doesn’t encourage you to go out again in a hurry.
In the beginning, you lose confidence in yourself and also your ability to handle it all. Couple this with no support or understanding then and it’s not long before the depression kicks in.
I am here to tell you, these days will pass and I, for one, will keep shouting about autism so when you or I, are out with our child who may happen to have a meltdown on a particular day, that maybe Tutting Tina may stop in her tracks and actually ask if you or I, need help instead of doing what she may have automatically have done prior to having been educated from someone who came across the Staying Alive With Five, blog or any helpful blog.
You have all seen the progress to date on the Staying Alive With Five page that my son Bodhi has made since last year when he was #noverbal, I share how he is getting on to simply show other parents who are maybe in the same situation of sending pleading emails, who are crying at night thinking their situation is hopeless, are waiting on appointments, trying to find the right services suitable for their child, who are maybe starting out on their journey and have no one to turn to, who have a gut feeling something is not right but don’t want to talk to their family and friends about it, who have no one who simply just “gets it”.
I share our story to tell you to keep going and let you know that there is always help and more importantly, hope. I certainly do not claim to have all the answers but I am willing to listen and in the strictest of confidence, point you in the right direction of who may have the answers that you need, if you want to pm me.
I know the free advocacy services in Shine are available to all families seeking help and information, we are only one of those families who received this exact help 16 months ago. We found out more information in that hour than in the previous two years asking and waiting on the HSE amongst others to even reply to us as we struggled massively.
When we were offered a place in September for Bodhi in Shine, we didn’t realise how truly blessed we were/are. The fact that such a fantastic service is on our doorstep, the attention to detail and one on one interaction our child and every child receives in there is an absolute credit to the tutors who work there and treat our children like their own.
As a parent of a child with special needs you battle with the fact that you need the respite time from your own child, the guilt that comes with this, yet the realisation that they probably need the break from you just as much.
It is not easy leaving any child in a preschool or creche scenario as you don’t know what goes on in your absence, did they eat, what did they play with, were they looking for you, do they have a pain somewhere, did they get a hard time from someone?.
Now factor into this that our children with autism may not be verbal and therefore cannot communicate any of this to us, their parent, the most important adult in their life who understand every little sound or gesture that they make and what it interprets, that is very difficult to deal with.
A huge level of trust is needed in order to be any way comfortable in leaving your child with anyone. We rely on our children, their reactions to people and situations to gauge how they get on and if they like who is there or where they are.
To see our children run in the door and tackle their tutor with hugs each morning and hear some of them now say “Good Morning” is such a massive deal to us, to see them now socialising together, interacting and running around in the morning together before the doors are opened is a sure sign that we have made the best decision and have found the perfect place.
SHINE also run things like sibling courses to help siblings living with autism which is such a huge factor in any family as the siblings do get overlooked and it is so important to create a fun place for them to be heard too and more importantly let them know they are just as important. They have created an app and their website has lots of info for families at any stage of the autism process, see www.shineireland.com As this is all dependent on the donations that are made throughout the year I feel very strongly in trying to support the few fundraising events they hold.
If your child has been newly diagnosed or you are waiting on a diagnosis you can contact Shine and arrange a meeting for information which many parents are not aware of. We hadn’t a clue!
The 12th Annual Shine Ball runs at the Maryborough Hotel & Spa, Saturday, February 10. Tickets €85, available from the Shine Centre on 021 4377052. Lenore would like to thank local businesses who have provided spot prizes: Moonbeams Stress Relief & Relaxation; Kool Kidz Korner; Crowley’s Gala, Ballygarvan; Rainbow School of Speech, Drama & Communications; Curvy Lady; Rejuvenate Crosshaven; Kira O Brien Ceramics; Crosshaven Yoga/Deirdre Desmond; Orchard Childcare; MediGlow; Spinergy Cycle Studio; Rose Cleaning Hands; Caroline’s Beauty Haven and friends Catherine Murphy and Margo Murray for their kind offers of prizes. The Admiral Drake, Valerie Sheehan author of Tony the Turtle books and Iona Appliances.