Defying The Spectrum

A Look at an Autism Family – Autism Awareness 2016, Day 29/30

A Look at an Autism Family and a Little Autism Parent Inspiration

 

AutismAwarenessSpecialFamily

 

 

I stumbled onto a fantastic article 9 Ways Special Needs Parents Are Different From Other Parents which offer some insight on special needs parents. Here is a list of topics discussed:

1. We might be oddly easy-going about certain issues.

2. We are also very strict about other things.

3. We have memories like an elephant.

4. We have memories like a goldfish.

5. We bring a whole new meaning to over-scheduled.

6. We have our own vocabulary.

7. We are fiercely protective.

8. Some of our closest friends are people we have never, and may never, meet in person.
9. We often feel misunderstood.

Page Source: http://blog.themobilityresource.com/blog/post/9-ways-special-needs-parents-are-different-from-other-parents

 

 

9a70a1c5467d47f5b47f4aea1171944bSpecial Needs families are a lot like other families. We love our kids fiercely and want the best for them. We may appeared frayed at the edges, because well, we are. At the start of our parenting journey, we may have the same day as you. When the baby is born we experience that joy of bringing our little one home and embrace the lack of sleep and new roles as Mommy and Daddy. We get excited to see our little ones reach those milestones…but then we start to stall at different places. We may start to see that our toddlers are not reaching the same developmental stages as other children their age. You may be getting back to a better sleep pattern, but we are not sleeping…still. Our children may not play with their toys the same way, or cry inconsolably for reasons we can’t figure out. As your children naturally become more independent, walking, and talking…ours are not. 

 

 

acc4032f3cfeeacc623aea5daeb35bf3So we begin to withdraw a bit, because our stories are different from yours. We start seeing specialists, receiving diagnosis and reports on what is going “wrong” with our child. We start  therapies and special schools. We don’t go to birthday parties and can barely get to the supermarket. We feel the scrutiny and judgement when our child struggles in public. We feel stuck in a fish bowl of the world looking in on us. We feel judged when you stare and assume we are “bad parents” when our child struggles. Our world erupts into chaos. A new vocabulary and language is thrown at us and we are scrambling to learn it. It’s like running to catch a train with your hands full.

 

 

 

13e813dd0f159c2e15de4490448933e5We want you to know that we are happy for you on your more typical journey, but at the same time we can’t speak  because we are caught in a storm of pain. Every day we are scrambling to put out fires. We are exhausted. At one point I hadn’t gone anywhere other than work, the supermarket, or my child’s appointments for 3 years. No restaurants, dates with the hubby, social visits, movies. We don’t take time for ourselves. We stop social visits. We can’t even get to the hair dresser or dentist. It is so painful for us not to be able to share happy stories about our little ones. We spend our days and nights panicking about whether we are doing what we need to do to make progress. We worry if we will ever make progress. Our paths diverge. We feel alone, sleep deprived, lost, and frayed. We are mentally, physically, and spiritually exhausted with no end in sight. We try to figure out a new normal and how to be positive through it all.

 

 

 

274a3f8f442907d2ca23528eb0062c71I remember sitting in the teacher’s lounge or sitting with friends on the daily train commute. I remember listening to my friends relate beautiful “normal” life, and simply trying not to cry, as I covered up my scratches and bruises all over my hands, neck, and arms that I routinely received trying to help my beautiful child through his melt downs.

 

8a6ba43c5747d80282e100f5678617e7It’s heartbreaking and not easy for us, and we don’t want to dump it on you, or take away from your joy. And we know you don’t know what to say, because it’s not your reality. It’s awkward. Awareness helps us all “clear the air” and my hope is that if you know a special needs Mom, Dad, or child, you can at least feel a little more comfortable to talk to us.

 

 

 

2d8bade4034a35eb6b8772278c1889d6Please don’t give up on us. Just smile and say hi to that quiet lonely Mom. Offer to get a coffee together. Please be patient with us. We may be in so much pain, we can’t reach out. But, please keep trying. Keep trying to talk to us, because we may need your help to stay connected to the world. Your kind attempts may just be the knot on the end of the rope that a special needs parent needs to hang onto.

 

Thank you for being patient with us. All my love to you.

 

Autism Parents, on the days that seem the darkest, remember . . .

AutismAwarenessMoms2014

See these 2 articles for more inspiration.

Autism Parents, Don’t Give Up!

Autism Parent Success Factors

 

 

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