Twenty Winners of Cutting Edge Therapies for Autism from Skyhorse Publishing
Mother's Day Dissent Autism Style

Count On Me: An Autism Mom's Mantra

Mother atlas By Cathy Jameson

I never consider Mother’s Day to be a day for me to celebrate—I hear Mother’s Day and still think of my Mom, not myself. Even when my kids make their hand-made cards and shower me with their gleeful greetings Mother’s Day morning, I look over my shoulder and wonder if my Mom showed up for a visit.

I guess I do qualify as Mother though because I have four little people underfoot that call me Ma, Mom or Mommy. It should be five little people hollering at me but one of my sons is still catching up to normal speech. Ronan has said Mommy in the past, and oh, what sweet music to my ears when I heard it! The last time I remember him saying Mommy was September 2005.  Now, Ronan uses sign language to get my attention.  While he was shaping the “Mommy” sign a few years ago, his hand would slip and a finger would go up his nose. “Mommy” looked like a boogey being retrieved and was not as endearing as the correct sign.

When I look back over the last ten years to what can contribute to my rank as Mother, I have a few typical qualifications: I’ve birthed five kids (all by c-section; ouch--I wonder if I could have an extra day off for that?). I’ve raised mostly polite children who would do anything for another human being (as long as it isn’t for a sibling).  I’ve turned a house into a home with toys, books and playtime fun while keeping it all secretly educational (I’m a former teacher who constantly thinks of potential learning moments). How then, with those easily identifiable Mother attributes do I sometimes feel that I am not the best Mother in the world? 

I guess, like any human, I find faults in myself when things aren’t perfect. That happens on the days I don’t see any signs of hope for Ronan. On those days, I wish I could be more patient, more organized, less frustrated and more accepting of my situation as his Mother. You’d think I might have a better outlook or even schedule by now—Ronan is eight.  I’ve been chasing his recovery for six or seven years already. I should expect delays, red tape, poor attitudes and financial constraints as I map out his future. Add that I’m juggling more than the average Mother with the needs my four typical children throw at me on a daily basis and my own attitude turns sour. Those needs intrude the ever-constant issues I am trying to sort out for Ronan’s special needs. I’ve run into more “Calgon, take me away moments” than I expected in the last decade (and I expect a few more as my children grow).

Before I sound like I’m complaining, and I’m not, I am very happy with who I get to parent. I have incredible children, a very supportive husband and experiences beyond my imagination. I walked into the motherhood role of a lifetime and am grateful for the chance to raise my children. I am positive that each one of them, including Ronan, will contribute great things to our world, and I couldn’t be more proud of them as I think about their futures. 

My four typical children I have carry me through each day with varying degrees of sanity. They are each “on track” with their development and are quite verbal, active and happy. This wasn’t always the case though. I suffered through many worrisome nights over someone’s lack of speech, delayed walking or chronic digestive problems. They have all caught up to what “the experts” say is normal so I breathe a slight sigh of relief. I couldn’t be more thankful to have these typical kids because of how much they make me work and in turn enjoy as a regular/normal/typical Mother. 

On the flip side, I’m still dealing with Ronan’s rocky road of developmental delays and greatly struggle with that.  Some days I feel like I am only going through the motions to help him: I do my homework to get through an I.E.P. meeting, but I don’t feel like I have the fight in me to really get the services he needs. I read up on what I think the doctors might tell me about his mito disease, but I really haven’t a clue what all the medical terms mean. I let him watch a movie longer than he should because I might have finally sat down by myself for a quiet five minutes for the first time in days. I’m certainly not throwing in the towel on those days; but, just when I feel like I could give up on Ronan, I fear that my poor attitude will throw me over the edge.  As with anything in life, it takes hard work to make stuff happen. I guess I never expected it to be this hard.  It shouldn’t hurt as often as it does to be a special needs Mother, but sometimes it does hurt.

Forcing myself to buck up and see the positives of parenting gives me a chance to heal parts of my saddened heart. I really try to keep my negative thoughts and emotions out of the way of my children because I feel I could lose the chance to be helpful and humble--helpful so that I can guide all of my kids to have every opportunity for full and meaningful lives; and humble to know that I’m merely a part of a plan that has a greater purpose.  I don’t always count on myself to push through life with a smile, but I’m constantly working on accepting all parts of life which includes the occasional saddened heart. 

Life is all-consuming for many people. I’m no exception to the curve balls or the unforeseen delays that creep up. Who doesn’t have a bad day every now and then? I’m witness to smooth sailing moments, too and that tells me that good things do happen. Those are the days that keep me moving forward with a slow-and-steady pace. I can’t speed up Ronan’s development beyond what he can physically and mentally handle. I sure wish I could though. Some days I’m the only obstacle in Ronan’s life so I have to be careful when or where I get upset.  I have four little reminders to help me back down off my high horse if that happens. Ronan’s four siblings see Ronan for who he is now—a happy energetic child who loves his toys, books and cookies just because he does. How interesting to see Ronan through the innocence of my typical kids. They have accepted him fully.  They don’t see a Ronan who doesn’t; they see a Ronan who does.  It’s not that he doesn’t tell us what he wants; Ronan does tell us when he uses sign language. It’s not that he doesn’t get to eat their treats; he does get different gluten-free cookies and crackers that don’t hurt his tummy. Ronan doesn’t get to play outside alone; he does get a special helper to watch over him so he can stay safe. How interesting for my typical kids to see the positives to help me work my emotions over the negatives.

Each one of my children depends on me to be Ma, Mom or Mommy. Until Ronan can speak I’ll gladly take Ronan’s thumb on his chin signing Mommy every second of every day.  I appreciate the chance to be here doting on each of my children. They’ve fulfilled my life in so many ways.  I know I won’t always be strong emotionally, but I think that comes honestly to many Mothers. I only hope I can continue to handle all of life’s difficulties I encounter as an emotionally maturing Mother.  I really strive to be a helpful, hopeful and thankful Mother for all of my children as they live and learn through me. Because of those children I have the confidence to tiptoe further into Motherhood. Happily, I’ve got a few little people tagging along beside me encouraging me the farther into it I go.

Cathy Jameson is a Contributing Editor for Age of Autism.

 

 

Comments

oneVoice

We had been tricked Benedetta. We loved our children,we
wanted the best for them,we were young, trusting and loving and blind in a way.I did not think anyonyone would give these toxic ingredients to kids or harm our kids.I believed
their lies,I believed in "safe and efficient". Now I know the truth and feel the pain every day for my son.We can not
change the past now,we need to stay strong,we need to educate the others,we need to make the right changes so this nver happens again.Most of all we need to take good care of ourselves,so we live as long as possible so we can support and help our children.Stay strong Benedetta.

SarahS

Cat, happy mother's day. You are both a fantastic mother and an inspiration to many. I'm also very fortunate to be able to call you a friend and can't wait to see you at the end of May!

Grannyblue

I am so sorry, Benedetta. I hope that Cathy's piece is a little help for you. It is a difficult day for me,too, because our special needs guy is a grandson and has been cut off from the helps he thrived on at one time, and my own children cut me off because I keep fighting for him. Well, but we are all in this same, unfathomable, but don't give up boat. Benedetta, I hope you adult child is doing well right now.

cmo

Passage Luke 7:11-25: Jesus Raises a Widow’s Son

11 Soon afterward Jesus went with his disciples to the village of Nain, and a large crowd followed him. 12 A funeral procession was coming out as he approached the village gate. The young man who had died was a widow’s only son, and a large crowd from the village was with her.

13 When the Lord saw her, his heart overflowed with compassion. “Don’t cry!” he said. 14 Then he walked over to the coffin and touched it, and the bearers stopped. “Young man,” he said, “I tell you, get up.” 15 Then the dead boy sat up and began to talk! And Jesus gave him back to his mother.

16 Great fear swept the crowd, and they praised God, saying, “A mighty prophet has risen among us,” and “God has visited his people today.” 17 And the news about Jesus spread throughout Judea and the surrounding countryside.


Mothers want their children back...

Benedetta

Well so far this mother's day is better than last year's.
Last year on mother's day I found my 28 year old daughter in a psychotic state, operating on her hand and arms. I spent mother's day night sitting up with her in a hospital room. This came on after weeks of not being able to sleep. She had not really slept well since the three Hep B vaccines she had as a nursing student, and then on top of that the flu shot a little before Christmas.

Of course this recent damage was on top of what she suffered as a child from a DPT shot (had Kawasakis from that) then the usual anger, depression episodes esp when the hormones started in a lot of parents complain of with kids that had Kawasakis.

So even whent they get grown - the medical people are out to get us all!

She has not missed work since last June of last year and for that I am grateful, I did have to drive her an hour commute for about four months. She is however,missing work today because of GI issues, throwing up, acid reflux and all that.

but this is what you get when you trust the medical profession - I am a fool, becaue you know the old saying fool me once shame on you - fool me twice shame on me - really I was fooled a lot more than that! A lot more!

rileysmom

Well said Cat. Happy Mother's Day to you!

Adam M

For all of the mothers struggling with raising our special needs kids. A little encouragement.

http://www.youtube.com/watch?v=1CSVqHcdhXQ&feature=related

Teresa Conrick

Beautifully said, Cat! Happy Mother's Day!!

luckymom2D

That was beautifully written and it has echoed many of my own feelings. You are clearly a wonderful mother!

Wade Rankin

Happy Mother's Day, Cat.

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