One of the reasons I started this blog was to help other parents cope with the diagnosis of Autism.
I’m a pretty emotional person and despite being generally open and optimistic at times I am extremely guarded and closed off. In times of worry or upset I tend to internalize and sit on my feelings and I have to admit I put up a pretty high wall of protection when feeling vulnerable. I have an awful time asking for support and I don’t trust well.
As a parent of a child with special needs it is difficult to share your feelings because in general people don’t truly understand how you feel or what life is like for you. Also, sometimes you may worry that by sharing your feelings you are making it sound like you dislike you child, life etc and you might not wish to have people think that, people pity you or people judge. It’s complicated on the best days.
My wish was to have someplace a parent with a child with autism could visit and know that their feelings are not unique, are not wrong and that they are not alone.
I hope to share my positivity and help others see there are some really lovely qualities of autism and that we should enjoy our children. And I hope I have done so.
So here I am, I am a Mom of a child with Autism.
I get a lot of “I just don’t know how you do it” and I do it one day at a time.
You can read a million books on Autism and I don’t think you will ever really find a hard and fast answer on how to help your child (believe me, I’ve tried) There is lots of great advice, lots of choices and options to try but the best advice I can give is watch your child, trust your intuition and live out of the box.
Try to be flexible and give your child time. If something seems to calm or please your child and it is acceptable to do, DO IT! Watch his or her actions and try to see why they are desiring to do them, what they might be requiring from the action and find a suitable solution. It might not make sense to you or I but it does to them.
My son use to jump on the bed and couch. A lot. We noticed after he did he calmed down, he was more focused and he behaved MUCH better and was a lot more conversational.
We bought the kid a trampoline. BEST investment ever. Hands down! He can regulate his own behavior and he knows when he needs a little bounce therapy, so he can make decisions and we can empower him to do this for himself.
As a family of 6 it is difficult to stay on a rigid schedule so I generally don’t Honestly, I am too free of a spirit to be boxed in by a routine, so I instead give Lincoln a time expectation and have since he was small. At first, when he was younger and he was more anxious and tense it was more difficult for him to accept being told he had to wait “10 minutes, 1/2 hr etc” but with time and a little patience, he learned and eventually embraced it.
If Lincoln wanted to go outside and play and I was cleaning I would show him the clock, and let him know when to expect to be able to go outside.
“when the small hand is on 11 and the big hand is on 12 you can go outside”
He would accept that and I was sure to always be true to my word. He learned that if he gave me the time I needed I would give him the time he wanted as well.
As a married Mom of a child with extra needs I not only had to learn acceptance of my childs autism but I also had to afford my spouse time to do the same.
This is a very difficult thing to do and there is a large divorce rate amongst parents of children with special needs, mainly in my opinion, because it is such a raw and painful thing to do, to share and to admit your perhaps unpretty thoughts and feelings to the person you love.
As I said before, I have a very difficult time trusting.
I have an even more difficult time admitting I’m not as hard and tough as I pretend to be. Ego and pride sometimes are a good thing to have because you can make yourself believe you are strong enough when you are not…until you become strong enough.
I found that I refused to talk to my Husband candidly about my fears and upset because I was afraid if I said those things out loud I might crack and fall apart. I often just blasted my way through the diagnosis and intital treatments and didn’t stop to think. I took charge and I did what needed to be done.
What I didn’t consider is how that made my Husband feel or if he might need me to share my thoughts so he could validate and share his.
I know my marriage suffered heavily through this time and I’m fairly confident this is also pretty common.
Parents want to help their kids and they will allow themselves to fall by the wayside in order to do so. I didn’t care that I was neglecting my needs but I also didn’t care that my spouses needs were neglected as well. In hindsight I needed to make time for him and be available to listen and share. Thankfully we eventually figured it out
It is easy to get burnt out as a Mom, it happens just a bit quicker as a Mom with a kid on the spectrum.
There is a extra thought and action needed to keep your child safe and happy and you can’t add extra hours to the day. The very best advice I can give a parent is to be kind to yourself. Listen to your body, and don’t ignore the signals that you need a break.
I went through a period of time where I just couldn’t function anymore and I instead of listening I just got to the point I really wasn’t able to juggle anything anymore. My work suffered, my sleep suffered, I was grumpy and sad when I am normally happy and cheerful. I couldn’t get out of bed, and I didn’t want to socialize. I wasn’t managing. I could keep my children cared for, but that was it. I needed to find a better way.
Thankfully I noticed and I took some time to sort everything out. Now, when I start to feel overwhelmed I remind myself I need to back up and prioritize and I don’t beat myself up over it, I just remind myself I deserve to be happy and I am only one person, I have no super cape or powers, so I can’t do it all…I have to pace myself
I believe we need to be realistic in our expectations and accept that life is yours to make and there is no hard and fast rules for what “happy” is. You can;t always keep up with the Joneses and who the heck wants to anyhow?
Sometimes we may need to accept that things will be different and that is ok.
So, maybe we won’t have lavish dinner parties because my son may not last through a formal dinner and all those people…that’s ok. Maybe instead we have over good friends and family and BBQ burgers (with cheese of course!) and hotdogs and enjoy each others company.
Maybe I won’t get to take the children to see Swan Lake but I will get to go to the drive in and see Monster University and cuddle my little guys in our family minivan.
Maybe some people will decide not to invite my family to their house to visit, and maybe that is ok too. The friends that do invite us are the ones I really want to be friends with anyhow. They accept me quills and all and I love them for it.
I am an autism Mom and I am just like you.
I worry about the future, I want to be liked and loved. I want to fit in.
I also want all these things for my son.