Ethan doesn’t have ‘friends’ like you or I have and this used to upset me.

Yes, it used to upset me, but not so much anymore. This took a long time for me to come to terms with. You see, I wanted friends for Ethan but Ethan didn’t really care.

Ethan is a very friendly little boy. He loves nothing more than grabbing, hugging and kissing people…just as quickly he can punch, cry, kick and bite the very same people he was loving on a few moments ago.

These behaviours led me to become a ‘helicopter’ mom. Yes, I’m open and proud that I am that mom!

Ethan has no idea how to ‘behave’ in social settings. Ethan is Ethan. He has no sense of personal space, which makes making friends with his peers very, very difficult, for all involved.

Ethan gets so excited that he will shove, kick, bite and laugh due to the sensory overload of just being around people. He is happiest around people; he is the most hyped up overexcited kid begging to be regulated when around people, especially people his own age. (Ethan stands at under 4 feet tall; his level of understanding is that of an 18-month-old; he is 13 but goes straight to 4- to 5-year-olds as he believes they are his peers.)

He sees no danger. Every child is approachable (i.e., fair game) to Ethan, which has obviously helped me perfect my ‘helicopter’ mom moves!

I don’t like explaining Ethan’s behaviours to parents. Sometimes I get the eye rolls and the tutts and, to be perfectly honest, sometimes I deserve them. I am not always as quick as I should be. Because it is me that knows exactly what Ethan’s behaviours in social settings are like, I take the tutts and eye rolls on the chin.

I apologise to the parents, the child (children) and any small animals that may have gotten in Ethan’s path, but really, what else can I say? If it’s a full-blown meltdown, and not a hyped-up Ethan (Meltdowns can be triggered if Ethan is forced to wait somewhere for an appointment or if Ethan was in a busy supermarket and had enough–where Ethan will hit out, scream and shout the ‘F’ bomb at me, you and whoever else is there), I tend to explain a little while I sit rocking with Ethan on the floor.

Ethan has attended two special needs schools. In his first school, he made no friends. This didn’t shock me, as the children attending that school were cognitively more advanced than Ethan. Considering Ethan’s syndrome is progressive, the writing was on the wall: Ethan needed to change schools.

His current school is a better fit, but still no friends (as such). He has a few classmates who I am pretty sure get on with him, as I have not had many calls since he started this school (regarding his behaviour towards his classmates, that is).

So, Ethan has no friends who call by. Ethan has never had a friend over for a playdate; nor has Ethan gone to someone else’s house for a playdate. And that’s okay.

Ethan does, however, have a family support worker called ‘G.’

G has been Ethan’s buddy for nearly five years now. They go out once a week together for 2-3 hours and do whatever Ethan happens to be obsessed with for that week. It is, of course, a form of respite for us. Ethan loves G and G adores him right back. It is a friendship; a very important one to all involved. G has coffee with me every week and has become a part of our little family.

‘E’ is Ethan’s home nurse. We have only known E for a year but, to be honest, it feels like she has always been part of our family.  Ethan absolutely loves her. She finds it hard to get her work done as he insists on sitting on her lap, kissing and hugging her. She has yet to refuse Ethan anything he asks of her.  E and Ethan have a wonderful friendship.

‘A’ is one of my best friends. She lives near me and spends a great deal of time in our home. She is great at keeping me sane, but also an amazing friend to me and my family–all three boys and my husband. Ethan adores her. She is able to read him and engage with him; she is his friend.

Ethan has two younger brothers: ‘J’ and ‘D.’ They both play, engage and have fun with Ethan when Ethan initiates it. They also know when Ethan is close to a meltdown or a sensory overload. They know when to back away and leave Ethan to regulate himself, which he does rather well.

Ethan doesn’t have friends like you or I do, but that’s okay.

Ethan has plenty of people who genuinely love him, understand him and enjoy seeing him. He has people in respite who enjoy him, people at school who laugh with him, and he has us.

He will always have us.

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By Geraldine Renton

Read more from Geraldine by visiting her website and Facebook page. Geraldine began to write privately as therapy and recently began writing publicly about learning to live, love and laugh again since her son was diagnosed with Hunter Syndrome.

I saw this quote several months ago, and it hit me. It touched something in my soul. I immediately wrote it down in my journal, and then wrote my own words underneath.

This whole mothering thing is a tough job. It’s a constant battle of knowing what to do and when to do it. When to say a lot and when to say a little. There is continuous doubt about whether we are doing it right. The amazing thing is that, no matter how scared or unsure we are in ourselves, or how many times we “mess up”, we find the inner strength to keep going.

Then, I set my pen and journal down and didn’t pick them up again for months. Why? Because I wasn’t sure what to say. I normally have my stuff together. Not now. Right now, I feel slightly defeated. I know that’s not a positive thing to say. That’s part of the reason I haven’t written for a while. I started writing this blog almost three years ago because I wanted to be a light to all of those moms (and dads) who needed it. I didn’t want to write the sad posts about how hard this whole “Autism Mommy” gig really is because who really wants to hear that?

Last week I was determined to write again, so I sat down and grabbed my pen. This is what I wrote:

Struggle is the word of the day. As I sat down this morning with my journal and a cup of coffee in hand, all I could think about was my recent struggles to get my thoughts from my head to paper. As I started writing my rambling thoughts, there seemed to be one resounding theme…”Everything is a struggle.” I struggle with how to parent. My oldest son is being incredibly difficult most days. My youngest son is acting out. My confidence as a Mom has plummeted. My thoughts are foggy. How am I going to be a “Sassy Aspie Mom” when all I have are “Debbie Downer” thoughts?

As my oldest son with Asperger’s enters this new stage, I just hope I am able to give him what he needs. Sometimes that seems like an impossible task. I find myself wanting to pull back and allow him to become his own man. I struggle with allowing him to fail. I struggle with knowing what my role actually is at this time of his life. Some days he still needs me a lot. Other days, he doesn’t want me around at all. He is struggling to find his way. I am struggling to find my new role in his life. His new responsibilities on his path to become an adult are starting to overwhelm him, and I am struggling to help him navigate it all.

After I wrote those thoughts, I closed my journal and put my pen down. I sat and drank my coffee and then went about my day. Writing is normally my therapy, but lately, I just haven’t had it in me. I haven’t had the ability to give advice or even tell a great uplifting story because motherhood has truly been a struggle.

This morning, I grabbed my journal because I needed to write again. I wanted to get my thoughts on paper. Before I started to write, I looked back at my last few entries and realized that I had already written what I needed to say. My story was written in those small journal entries when I didn’t have anything left to give. It wasn’t uplifting or funny. It was just the true story of this “Sassy Aspie Mom’s” life. Right now things are damn hard. Parenting a child with Asperger’s through the teenage years is definitely a struggle, and my story is no exception.

The truth is, birth is about making strong competent, capable mothers, but strength isn’t given to us. Rather, it is earned through pain and tears and fear and doubt and love and compassion and accepting our mistakes and loving ourselves despite it all. It is because of those struggle, not in spite of them, that we finally begin to trust ourselves and gain that amazing inner strength that makes motherhood such a gift.

— Originally published by Sassy Aspie Mom on October 26, 2015. Republished with Permission.

Read more from Rachelle by visiting her website and Facebook page. The blog focuses on her daily life: being a wife and the Mom of 2 boys, and raising a child on the Autism spectrum.

 

 

 

Not a day goes by that I don’t think, “What is going to happen to Trenton when I am gone?” It is a thought that no parent should ever have to think about. Truth be told, if my child did not have autism or any disability, I would not even be thinking about this. However, that question haunts me daily.

Oh sure, there are days that I don’t worry about it as much. Then there are the days where it gets the best of me. It is my greatest worry and fear. Who will take care of my precious child when I am 6 feet under?  Will he be cared for and loved? Will they make sure he is bathed and fed?  Will he be happy? Will he know and understand that I just didn’t up and leave because I wanted to? Will he understand death and know that it is a part of life?

It would be different if I had a neurotypical child.  I would not think about that dreadful thought as much. However, for the families much like mine, who have all of their children on the spectrum, we worry about this to a very high degree.

I tell myself to let go and let God handle it all but that is hard. It is much easier said than done!

No parent wants to close their eyes in death knowing that they are leaving a child in a residential home to be cared for by others. I have heard many comments in my life how there are great workers in the many residential homes. It doesn’t matter how nice the residential home may be or how nice the workers may be, no one can take better care of a person than their mother or family member.

I want to die knowing my child is married and raising a family of his own. I want to know on the day of my death that my child can take care of not only himself, but his family too. Sadly, families raising children with autism very rarely get the reassurance that their child is going to be just fine in life when they are gone.

We often hear how mothers worry about their children even when they are grown. I never understood that until I became a mother. Now I know why my mother always worried about me even after I was grown and on my own. Simply put, mothers never stop worrying.   Therefore, the degree of “worry” is multiplied by 100 when your children have autism.

So, yes, the horrible thought that no parent should ever have to think about weighs heavily on my mind and heart daily. Who will take care of my children when I am gone? The daily stress of this thought will never go away because it is real. It is going to happen whether I want it to or not.

I can try to explain this worry to others but the only people who really understand and “get it” are the other parents of children with autism or other disabilities.  They know what it feels like to have this heavy worry on their shoulders daily.

So, to the mothers and fathers out there that have this worry every single day too, you are not alone. It is real. It is normal. We have many worries and fears in our life raising our children with autism. If you are like me, you don’t want to even think about this daunting thought but how can we not think about it?  So, if you have a day where you shed countless tears over this thought that is okay! We are human. Our journey is not an easy one and it will never be easy.  Cry. Scream. Kick. Do whatever makes you feel better! You are subject to that from time to time.

We just have to take one day at a time even if it is full of worry and heartache.

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Angela and her family reside in Terre Haute, Indiana, where they moved to get more help for her son with severe autism. She was born and raised in a small town in southern Illinois where her love for animals and helping others blossomed.

She enjoys sharing the honest and real side of autism through her writing. Her writing may not apply to every family with a child with autism, but it is sure to apply to the families raising children on the severe end of the spectrum.

To read more of Angela’s journey please visit her website or like her Facebook page.