Adam asked me to write a Blog on parenting a child diagnosed on the Autistic Spectrum. I don’t do social media so this blog business is a bit foreign to me but I will give it a go! I have so many thoughts and experiences on the subject I feel I could fill a couple of books maybe even a library! Please keep in mind this is only a little part of our story, it is different for every person on the spectrum, what stage they are at and of course every family by their side. Truthfully, I have found it tough at times sometimes feeling lonely and scared, often frustrated and angry but it has also been a rewarding and enriching experience, I have learnt so much from Adam and I am a better person for that – Thanks AD!
Life got a little easier when we finally got a diagnosis (late) for Adam of Asperger’s Syndrome (AS). At least with a correct diagnosis we knew what the problem was and we could start fighting for the correct supports and services to be put in place. We now had an explanation for his behaviour which helped somewhat with the disapproving looks, the bold child comments and the advice that was by no means evidence based! Often it felt like all I did was fight, make phone calls, have meetings, write letters and attend appointment after appointment with Adam. I was like an army Sergeant in my toughness to get help and support for my child but at other times I would break, the tears would flow and not stop. Having said this every moment was worth it to see Adam today, the progress he has made and continues to make despite the challenges that remain.
Adams transition into secondary school was difficult, in fact that word does not do justice to how difficult it was, I believe ignorance was the issue in this case. At the very first school meeting even prior to Adam starting 1st year it was suggested to me by the teacher looking after special needs that maybe this school was not right for Adam, I was asked why I didn’t try another school in the area, this was the first warning signal I got. My biggest regret is that we stuck it out for 2 years, I should have listened to my gut instinct sooner. As Adam has already mentioned in one of his blogs it was certainly not a lack of resources. In transition year Adam attended a new school (we had a lovely calm run up to his Junior Cert with home education) and I cannot adequately put into words the difference changing schools made to both our lives, don’t get me wrong it was still tough with many difficult days but the support from the new school and its staff was fantastic, I rarely had to fight for anything anymore, SNA’s, teachers, staff and the principal just got it!
- Become an advocate for your child, you are their voice, you know them best and what their needs are. It is not an easy task but there are supports out there.
- One of the first things I did was join Aspire, I learnt so much more about AS, attended conferences, met other parents and was supported in my fight for Adam’s education.
- Develop a good relationship with the professionals working with your child, it’s not easy for them either, many have a heavy workload and are under resourced. Adam and I worked with an Occupational Therapist (OT) who did everything in her power to help make school a better place for Adam, she attended school meetings, wrote letters looking for supports for Adam and had OT sessions with both of us. I never fully understood the role of an OT until I started working with Adams and certainly having a good one on board is a must.
- Look after yourself you don’t have to be ‘super mum or dad’. It’s like on an aeroplane where they tell you to put on your own oxygen mask first before helping others! At times, I have not been very good at this and still must work hard at it.
- Find someone you trust who can help with your child even if it’s only for a couple of hours a week, for me my parents were great and Adam was happy to be picked up from school one afternoon a week and go have lunch with them, those couple of hours were a god send to me and it deepened the bond between grandchild and grandparents.
To those of you who know a parent looking after a child with a diagnosis of ASD:
- Please understand that these children require more time, effort and patience than most and this can take its toll on parents.
- Financially it can be difficult with high costs associated with diagnosis and health care expenses, there can be underemployment because of the time needed to care for their child and even job loss.
- Caring for a child with ASD is challenging and affects the whole family. All of this can affect a parent’s health and result in stress, anxiety, depression or physical health problems.
- Learn about the condition, support the parent, give help where you can and listen to their concerns you don’t need to have all the answers!
- Don’t be judgemental of either the child or the parent this will be picked up on and serves no useful purpose.
- ASD is not caused by parenting, it affects children from all walks of life all over the world.
Thankfully today that there is more understanding of ASD and more knowledge around the condition however gaps remain in understanding by professionals, family, friends and within the workplace, this needs to change….
I am so proud of Adam and his determination to educate others around this condition and hopefully provide an insight into what it is like to live on the spectrum – who better to learn from than a young lad who has lived in the Aspie world for 23 years!