I’ve lived a sheltered, “typical” life. I didn’t know or interact with anyone with disabilities or any special needs, nor was I raised with exceptionally positive attitudes toward those who had them. When I found out my almost-two-year-old had Autism, I was devastated. Though I knew my son was still the same person he was the day before, I knew how other uneducated people would perceive him. They would think he was a vegetable. The truth is, if you don’t get to know those who need a little extra help, you can’t understand how capable they really are. We got the diagnosis two days before having our third child, and we kept the diagnosis to ourselves to let it sink in and educate ourselves. I was still afraid to tell those closest to me, for fear of their harsh judgments. We had already been judged for having a third child, and I’d seen their reactions to others’ Autism diagnoses.
Keeping the diagnosis to ourselves allowed us time to get answers to our questions, which our family would surely ask themselves, but it also kept us on an island without support. We dug in deep, got referrals for evaluations, started therapy, contacted organizations who might have more information, and attended workshops. We were drowning in information we didn’t know how to manage.
I became frustrated that there was no central provider who could decipher the information, and manage my son’s overall care and development. I was it! And I knew nothing! His pediatrician was willing to make referrals I asked for, but didn’t know anything about Autism. How was I supposed to know what referrals he needed? I’m not a professional!
The drowning phase is just unavoidable. There is no way to ease into the diagnosis. Talking About Curing Autism (TACA) has a Journey Guide designed to do that, but I didn’t hear about it until later, and have never had much patience for books, especially when it comes to treating my child as quickly as possible. I really must go back and look through it. I just wanted to talk to people and get answers. Unfortunately, with this diagnosis, and at such a young age, even those who worked with him the most couldn’t say what life would be like for him. In between mourning my expectations (my six-month maternity leave taking them to museums and activities turned into back to back therapy, not to mention his unknown future), and coexisting with my husband still in “Daddy Denial” I pushed forward pursuing treatment for my son, alone. Don’t get me wrong, my husband is the most amazing husband and father, helping with meals, dishes, laundry, etc., but he didn’t want to talk about treatment or be involved in any decision-making therein. He just didn’t think it was a big deal or very necessary. He wasn’t interested in any articles or information on the topic.
My “To Do” list was several worksheets in Excel. I spent every day on the phone, while doing in-home therapy and caring for my newborn and four-year-old.
I had contacted Help Me Grow before the diagnosis, when I wanted help with his delayed speech, and they got me into a speech workshop, and as luck would have it, an audiology evaluation, pro bono.
TASK connected me with a volunteer who, without knowing it, talked me down from my throne of self-pity, so I could appreciate the joy I have with my son each day. They also offer free, well-regarded classes on disability rights and working with school districts to get your child an appropriate education.
TACA provided a mentor who I can talk to about the silly little details of life and make recommendations based on her own experience with her child. We have also been blessed to be the beneficiary of a TACA scholarship for doctor visits.
My church’s support group was the last place I expected to find real, tangible help. I thought it was going to be a bunch of moms crying, and didn’t expect moms of other diagnoses to have much to offer me. I was SO wrong, and it doesn’t surprise me. God works through every little stream in my life. First, I hate to say it, but seeing moms in more difficult situations brought me peace and humility. I didn’t know it could be worse than what we’re dealing with, but there is some really tough stuff out there, and saints of mothers sticking through it. While the other moms’ children have different diagnoses, I have run into a couple of them in other areas of life (our therapy clinic, kids choir). There wasn’t truly a connection there until we started seeing each other on a more regular basis. Once the connection was there, we talked more and I learned more about my options and my own school district as a result, which will better prepare me for that relationship when it comes. One of the facilitators of the group is a Marriage and Family Therapist at an early intervention center in our area. This didn’t mean much to me at first, but when my baby needed services, and I was given three choices of vendors, and one was the center, I chose it mainly based on familiarity. This led to hearing about their amazing infant program, which is free, and wonderful. It also led to an amazing resource for my oldest son, a therapist specializing in siblings of special needs children, who is also my very own support group facilitator, also provided for free. God loves this family very much.
While I am still sad I am not doing the things I had planned to do with my oldest child, and often lose hope the therapy schedule will ever allow it, I praise God for rewarding our faith and trust by opening windows on an almost daily basis.
Do you have any resources to share or questions about the ones I’ve mentioned? Let me know in the comments.