My son was five when we received the diagnosis. I knew that he was autistic, but no one would take me seriously. “Globally Delayed” is what everyone said. No reason why, he just was. I had taken my son to several specialists for testing. We had ruled out all kinds of diseases and disorders. Blood tests would come back as abnormal, and I would be living in fear that my child had a terminal condition, until the new results would come back as negative. You would think that it would be a relief to finally have my son diagnosed with autism and not a condition that would take his life.
We went through several family doctors and pediatricians before we found one that asked a very important question, “What is his diagnosis?’ I told him globally delayed. My son’s new doctor wanted to know why. He explained that there has to be a reason, that globally delayed was not a diagnosis. I broke down. I knew he was right, but no one else cared about an exact diagnosis. I explained everything we had gone through, and he examined my son and looked at the medical records. At the end of the visit, he said he wanted to set up an appointment for my son with developmental specialists. It was time that we got our answers.
It took a long day of evaluations, questions, and observations and a heart wrenching discussion with the doctor in charge of the evaluation, but we finally received the diagnosis I already knew to be true. My son is autistic. Five years later, I look back and I still cry when I remember that day.
How do you handle it when you finally have the diagnosis? You let yourself. You let yourself feel. You are about to officially take a long and difficult course in your life. You were already on it, but now, it is official. Now you can come up with a plan that will help your child and your family. There are a lot of resources available now, that were not available when my son was younger. You need to educate yourself on your rights, your child’s rights, types of therapies, insurance, SSI, community resources and more. You are your child’s mother, advocate, friend, teacher, and therapist. No one knows your child better than you. Do not let anyone tell you that you are wrong or that you don’t know what you are talking about.
Raising a child with autism is hard, but it is also rewarding. You will find a strength inside you that you never knew you had. You will discover patience and intuition that will get you through each day. It is important that you live in the day. When you start looking towards the future, you may start to feel overwhelmed. There is plenty of time to plan for the future. Take the early years as a time to focus on the present. Once your child becomes a teenager, your world will change again. You will need to start planning for an adult with a disability.
The most important piece of advice I can give a parent with a child that has just been diagnosed with Autism is to love your child and take care of yourself. You have to find something that is just for yourself, a long bubble bath each night, or a couple hours at the store, alone. There are a lot of sources of information to draw from, but it is your responsibility to prepare and implement a plan for your child. You need to take care of yourself or you will not be able to take care of your child. There is no right or wrong decision, not when it comes from love. You will make mistakes, don’t dwell on them. There is not a parent alive that hasn’t done something they wish they can go back and redo. Take care of your family. Your journey may be scary at first, but it is also a very rewarding and loving life.
9 comments:
Tammy this is an excellent post
Great advice for any parent who has just been told their child has ASD.
Yes we have to look after ourselves. I'm fortunate to have what I have.
Well said you rock!
Diagnosed at 5? Gosh that was a little later than usual at least they finally listened to you.
Take care and love to you and your wonderful family
Liz, Michelle & Inaya NZ
We were completely rocked when we got Gus's first diagnosis at age 2, but I attribute that largely to the very bleak and melodramatic outlook we were given. But I've come to accept and appreciate his differences and I couldn't imagine him any other way. Glad you posted this.
I've left you an award at my blog!
What a great resource you have here. So informative!
What a wonderful and inspiring post!
My son was originally diagnosed with ADHD at the age of 4. Then, at the age of 5 his doctor mentioned bipolar disorder. The final diagnosis from his pediatrician was Asperger's at the age of 6. We then took him for that day of evaluations, questions, observations, etc. and finally got the diagnosis of Autism. As his mother, I knew something was "different" from the age of 2 years and 9 months but it still felt like somebody had kicked me right in the gut when we finally heard those words. It was a hard feeling to describe. The diagnosis was something I knew in my heart to be true but to actually hear somebody else say it made it real. Thank you so much for your post! God bless you and your family!
My son was initially diagnosed with temporary hearing loss, and when that was corrected we were told he would catch up where he was showing delays (particularly with speech). When we had him tested again at age 3 and I was told that he had intellectual disabilities, I felt like I was punched in the stomache. From there we finally learned that he has fragile X syndrome, which in his case includes autism. By then it seemed like old news, but the first time that you learn there's a permanent developmental disability is overwhelming.
My daughter is 2 and a half years old. At 2, the doctor didn't want to label her as autistic because there was always a chance that it /was/ a global developmental delay. She's been seeing an occupational therapist and a speech therapist and we've just started music therapy. When she's three, she'll be going to preschool for three hours a day, four days a week.
She will be re-evaluated at 3 for autism and I'm more than sure that she will be diagnosed as such.
The thing is: we've already gone through the hell of thinking she might be. The diagnosis of autism will also come with some benefits such as our insurance covering 20 sessions of speech therapy a year. Hopefully there's more, but we really haven't looked into it yet. I also know that there are groups for specifically autistic children in the area and I'm hoping that this diagnosis will open some doors for us :)
I hate that parents are still going through what we did early on. Waiting so long for a diagnosis. Doctors not wanting to make a diagnosis at an early age, telling you your child will outgrow it. The younger the child is when diagnosed, the more help and an increased chance of overcoming some of their problems. Keep fighting for your children, as I do mine. Advocating for our children is a lifetime committment.
Oh boy. I have so much to say to your wonderful post that I don't know where to begin! First of all, good for you for being so brave!
I have a different take on this, though. I related to your post because our little one was having all kinds of problems at age 2 and when she was diagnosed with sensory processing disorder, I sighed with relief. The diagnosis fit her like a glove and we made good headway with early intervention.
About a year later, she was diagnosed with autism, and it ripped my heart out. I fought it like a mother bear. It didn't fit like a glove and the only real evidence they have is her stimming behavior.
Another year has gone by, and I'm frustrated. I'm ok with the autism diagnosis, but I'm coming to think that we really view this as a terrible negative thing...and I'm not sure why. Maybe because Zoe is high functioning. Maybe because my other daughter has Down syndrome, and comparatively, the autism isn't so bad. Maybe I'm still just too naive.
For me, I have to view both my kids' disabilities in as positive a light as possible, or else I don't think I'd get out of bed in the morning! No, it hasn't been easy raising either child, but I still believe we only get what we can handle, and maybe God has some purpose in not giving me a "typically developing" child. I've let go the bitterness over that, because in the end, it's the bitterness that will hurt my parenting.
I wish you the best of luck!
gina b
mom-blog
I guess we were lucky because our son was diagnosed quite early when he was just 1. Has seen a lot of development since then.
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