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Sue’s story

“This journey has proven difficult and new dreams are being formed one day at a time.”

What kind of stigma did you experience/observe?

My son was born with developmental delays which eventually evolved to a diagnosis of Autism. Everyone reassured me he would “catch up” because he was a boy and boys develop later. I reached out and cried to friends, but eventually was alone on this journey. Misunderstood, scared and alone.

Stigma story

We started out believing our son, who is only 3 now, had hypotonia (low muscle tone). We received services through Early Childhood Special Education when he was 14mo. It was the beginning of endless doctor appointments (neurologist, geneticists, developmental pediatricians, eye doctors, ear doctors, nutritionists, physical therapy, occupational therapy, speech therapy, pool therapy, home therapy, blood draws, genetic testing, orthotic fittings, EEG’s, ear tube surgery (2x’s), MRI’s (2x’s), and so many appointments for the next few years. We’ve been handled with care in some places, while being told bluntly to expect a parent’s worst nightmare (mental retardation, won’t walk, won’t talk, life-long support, seizures) in other places. We were told these scary prophecies when our child was a mere 18mo old. Think you know fear? Think you know depression? Think you are alone? Think parenting is hard?

This is our first child. We are new parents. We are on a life-long journey, likely filled with terms I knew professionally (I am a psychologist), but not personally: IEP’s, Autism, Special Needs, PT, ST, OT, GFCF diet, etc. We don’t know our child’s future. We hold hope. HOPE: It’s our magical word in our home, along with HUGS, KISSES, and UNCONDITIONAL LOVE.

This journey has proven difficult and new dreams are being formed one day at a time. It is NOT what we imagined, not OUR child. Yet, here we are.

Some of the difficult parts have involved a loss of support from loved ones. I understand the statistics prove 1 in 88 children and 1 in 54 boys have an autism diagnosis. In our support network, which is relatively vast, NOBODY has a child with autism. Yes, no one we know in real life. Despite this reality, I have reached out and cried on friend’s shoulders as I have grieved the loss of dreams for my first-born child. As I felt overwhelmed with our schedule of appointments. When I was told my son was mentally retarded and would be in a group home vs. college someday. My bubble burst: POP (was echoing all around me). Some friends, similar to our doctors were caring. Others were clueless, falsely reassuring, overwhelmed by my overwhelm; and abandoned us in our time of need. We learned what a “true friend” really meant. We felt very alone still (my husband and myself).

We both sought out our own mental health support for depression, anxiety, and the overwhelmed feeling during this time in our life. We needed to keep ourselves healthy to care for our son, to preserve our marriage, and to be our best into the future. We both sought out medication, because sometimes situations bring out depression and anxiety that is difficult to manage without medication. We willingly accepted this paid for help and were so relieved we had medical insurance to cover it.

In addition to therapy, I’ve been a strong advocate for our son’s team. I have asked for new doctors, new teachers, new therapists (all who cared), and new goals on IEP’s. I have sought out evaluations and researched programs that can assist my son in becoming the best he can be. I keep hearing early intervention is key: so I seek as much out as possible, while my husband and I work FT jobs. And I am SO THANKFUL I have done my work because my son’s team is wonderful. He learned to crawl at 20mo, he learned to cruise and explore from 20mo-36mo, when he became brave enough to walk on his own. Yes, at 3 years old, my son is walking and we celebrated this milestone like it was a miracle, because quite frankly we were told he wouldn’t walk someday. Now we work on talking, communication, social skills…..all while finding people who love and support my son. We have a “family” of helpers. These “family members” have been a life vest at times, cheerleaders at others, and simply so important to all of my son’s success. We feel fortunate to have access to these helpers in our community.

Our journey still lies ahead of us. I have found forums online that have helped me form friends with other mom’s of children with ASD around the country, who I wouldn’t have otherwise met. I have learned what “unconditional love” truly means, a level of patience that rarely wears thin, and how to find my voice for my son who is still finding his own.

Our story continues. We will always hold hope throughout it….

What could someone have said/done to make it ok?

Simple things, like:
1. What can I do to help?
2. I am here for you, let’s catch a coffee and I will bring the Kleenex
3. Can I buy you a meal? You are probably worn thin…
4. Can I bring him to one of his appointments each week?
5. I am here for you, no matter what happens with your son, I am here….
6. Cry and talk as much as you need….I will shut up and listen
7. I can’t tell you things are okay, because they clearly aren’t right now….
8. You are a wonderful mom – and your son is so lucky to have you….
9. Can I attend some of your appointments and take notes? It must be overwhelming and I bet you can’t remember what was said sometimes….
10. Wow, this has to be really hard for you….I bet you didn’t think you’d be in this place when you had your son.
11. The future may seem bleak right now, but always hold hope….
12. Let me help….I want to help.
13. I will check in with you every week, just for a quick call or email, just to make sure you are okay….is that okay?
14. Can I clean your house? (lol 🙂
15. Can I watch your son for a day, just so you can get some stuff done w/o worrying about him, his therapies, etc.
16. Let’s go have fun….
17. It’s okay to take a break from therapy, and yes, early intervention is key but don’t feel guilty to stop and care for yourself too….
18. You are doing a wonderful job, even if it feels like you are failing much of the time
19. This is NOT your fault, your husband’s fault, or anyone’s fault
20. Your son is awesome and we love him, no matter what diagnosis he has….and we will always love him, even when he isn’t cute and dimply anymore as he grows up 🙂

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