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.
Chat soon
Charlie xxx
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HI, My name is Laura. I am more commonly known as Sasha’s Mom. It took me a long time to realize that I actually have a name of my own. lol. My son Sasha is now 35 years old and lives in a group home with four other absolutely adorable autistic men. The stories I could tell….. But the one thing I can say is: no matter how hard it gets ( and I know it is hard) it is worth every second. It is a relationship that most people never get to experience in their life time. A relationship so honest, unconditional and without pretension, that you can get an honest answer to ” Do I look fat?” before you even have a chance to ask it AND it isn’t even offensive. lol. And to all those haters out there, everything you say can and will be repeated. lol. Now for the common autistic Mom trait, and this almost can not be helped. I just have to tell one little story. Just the other other day when I picked up my son for church, his staff asked me when I would have him home. On that particular day I had told the staff that I might have to bring him home a little early because I was ( whispered) having a little problem with diarrhea. Sasha was not in the room and I did not think he had heard me until we got to church and it was time for prayer request. Yeah, you guessed it……..Sasha raised his hand and said, ‘ please pray for my mom , she has diarrhea”. lol If only I could have crawled under the pew……Ok, one more quick one. Nothing says I love you like when my autistic son called me on my 50th birthday and said ” I’m so glad you made it 50″. Have you noticed how Autistic people are like cats? You know your loved when your ignored. lol.
Thanks for listening,
Laura
Thanks so much for your brilliant comment Laura. Your love for Sasha shines out and he sounds hilarious! Cx
As a parent of an autistic child, I found this incredibly defeating/deflating to read. I was looking for something uplifting and positive and unfortunately started reading this unknowingly thinking it’ll help me think clearer. It’s only clouded my mind further. I’m not a “warrior mother” by any stretch and don’t hold other mothers to such a standard. I’m a regular human being and unlikely to spontaneously turn into some super mom without entirely losing myself in the process. I love my own child, of course, but I do not find any meaning in this senseless suffering. Essentially, the article drives home the point that it doesn’t get at all easier with time, we just grow massive emotional callouses and are beaten down to where we are able to cope with the “challenges” better, or just not care anymore about our own mental well-being or happiness enough. We have to just give into viewing life with our child as a series of insurmountable struggles and failures with no breathing breaks. But, supposedly, because we love our child, that makes it all better? No. It’s a nightmare.
Hi Caroline. Its so hard to live with a life like ours. I do get it but I also know that what we focus on has a way of growing and that if the ONLY thing you ever feel is sadness, anger and loss then that will shape both your life and that of your child. I truly hope that you can find a way of knowing that you dont have to be a super mom or lose who you are. You simply need to take one day at a time and be there for your child and for yourself too. Amateur skiers often hit trees on the piste because internally they are saying “dont hit the trees, dont hit the trees” and so without even realising it, they are drawn that way. Professionals on the other hand think “follow the snow” for a smoother path. I sincerely hope that you can find some snow on your journey and follow it. Cx
Just an hour or so ago I was reminding myself to speak/think on the positive side of a situation versus the negative. I was thinking.. I hope my child stops screaming at me for everything. And then I rephrased it to.. I hope my child has a great day today. I believe our thoughts truly shape a lot of what we see out there. There are situations that we cannot change, but for the ones we cannot change, we can change how we look at it. It seems like bs, but once you manage to get on the good side, it’s like Wow, I can handle this. I feel like the mom you replied to often. My 4 year old son has hundreds of words and I’m so grateful, but we are still unable to communicate fully and he basically screams at everyone for everything. We haven’t been allowed to do anything (if we want some assemblance of peace), for the past 2 years… And then COVID… But we have to keep positive. I’m looking into therapy for myself, and the rest of my family, and I think that’s so important. And there is always hope. A lot of things do get better with autism. 🙂