Raising a child with autism, as with any additional need or disability, can be incredibly challenging at times. There have been moments as I have relayed some of our adventures to friends and colleagues that they have asked “do you think it will ever get easier as he grows up?” and it’s a question that in all honesty, makes my heart sink a little.
It’s almost impossible to apply the traditional notion of parenting to children with disabilities.
Teething is a nightmare but once the teeth arrive, all is well again. Potty training can be exhausting and frustrating but once it is mastered, it is soon forgotten. Of course there are challenges in parenting typical children – being a parent is probably THE hardest job in the world, but raising a child with autism comes with a life long acceptance that the ‘phases’ we are struggling through now will only be replaced by something else as time moves on. On top of that, the battles that we face with health care, education and basic rights etc are ever present and ever changing depending on what our children need. There is very little ‘aaaaand breathe!’ time before the next issue arrises.
One day we are worrying about feeding, talking, eye contact. The next moment we are considering schools for our children who need so much more than the average child, and are in negotiations about transport arrangements and putting our own work and life commitments on a back burner to ensure that our children get what they need. A friend of mine who doesn’t drive, was told that her son didn’t qualify for transport to the school she knew he needed to be at and so she sold her house and relocated the entire family so that he was able to attend. This isn’t uncommon.
Then there is a transition to the next school, which can be incredibly difficult for children who rely on routine and familiarity.
And don’t get me started on the cruelty of puberty; the natural changes to the body of a fourteen year old boy with the understanding of four year old is horrendous for everyone concerned.
In the future I will have to consider the options for him once he outgrows the safety of school. I’ll have to think about the care arrangements for an adult who cannot fend for himself, when I am too old to care for him on my own. I will have financial worries on his behalf as he becomes a man with the understanding of a child. I also have to accept the reality that I will one day leave him, vulnerable in this world without me.
Do I think that raising a child with autism gets easier? As I nurse an injured wrist from my sons latest meltdown, as I give him the antibiotics he needs after a recent procedure to correct an issue he’s struggled with for months, unable to communicate or explain his pain, as I yawn through another day after yet another night of disturbed sleep, I know one thing for sure. Raising a child with autism definitely does not get easier.
But as parents, we get tougher to the challenges and to the life we battle so hard to make a great one for the children who are the life blood in our bodies.
We get up day after day and fight the good fight. Sometimes for our children. Sometimes with them.
I wouldn’t be the warrior mother I am without my boy and as much as its exhausting at times and as much as I know there is so much more to come yet, I’m doing it with a love far stronger than any challenge will ever be.
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