I met Melody via our husbands. Milkman did some time– I mean lived in– Connecticut as a kid as his dad had work there. Milkman’s fondest childhood/pre-teen memories take place with his best friend, Ben. Milkman moved back to California over 13 years ago but apparently their friendship was a lasting one because they have each been in each other’s weddings! When Melody was pregnant with her second child I asked Milkman for her number. Both in similar stations in life, we hit it off. There have probably been only 10 days in the last year and a half where Melody and I haven’t texted or facetimed! Forget MM and Ben, we have something better! Melody has become a very dear friend and Sister! I’m honored to be her friend.
When Melody first shared with me that she was considering getting Michelle evaluated it was a super stressful time for her. Because I wasn’t there (and we’ve never met in person!) I think I felt safe in some ways for Melody to feel like she could open up to me without fear of judgement. MM and I have spent much time praying for our friends on this journey. Seeing the array of emotions and confusion and frustration and victories Melody has gone through, I asked her if she would share some of her story for the blog. She agreed to share and I couldn’t be more grateful. This meant to be an encouragement to moms who may be going through the same thing, to know you aren’t alone! I also hope it will be helpful to those without a child on the Spectrum who have friends and family going through what Melody has, to be supportive– and to know when to shut up. 😉
So, without further ado, here is the first installment on Melody’s journey.
******DISCLAIMER- This post is a record of my personal struggles and acceptance of my daughter’s diagnosis with autism. It is not meant to be a guide of how everyone should feel about any struggle they may have with autism. ********
I don’t remember what day it was or what I was wearing or what she was doing. It’s not important anyway. I just remember looking at my daughter and knowing that she had autism. Its funny to think about it now because just 2 months before I would have called anyone who thought that crazy.
Michelle started using some words around the time she was one and had maybe ten by 15 months. Most of these were Sesame Street characters and of course the word “more”. Michelle went to all of her checkups and hit all of her milestone by the time she was 18 months. Somewhere around there is when I noticed a drop off in her word usuage. I thought it was odd but I was pregnant with my second child and too exhausted to make her talk, so I let her gesture because it was easier for me. When my son was born she was only 21 months. I told the doctor that she wasn’t talking anymore but obviously she could because I had heard her use words before. He said that it was likely she regressed because her newborn brother got lots of attention and since the baby didn’t talk she must have felt like she didn’t have to. He said to wait until she was two and not to worry.
Her second birthday arrived and she still wasn’t talking. She was still putting all of her toys in her mouth. She was still flailing her arms around. Again, the doctor told me not to worry and said that she probably just had a speech delay. I decided to take his word for it. Around this time is when basically everyone I knew started to express concern. “Two years olds should be able to string two words together. You should have her evaluated.” “She’s not talking yet? All of my kids talked long before now. You should have her evaluated.” I must be honest- this was the greatest deterrent to me having her evaluated. If there is one thing I hate, it is people comparing my kids to their kids or telling me how to raise my own children.
I will admit that I was still concerned despite the doctor’s assurances. I always worry…a lot….about everything. It’s something I have been trying to change about myself. I figured the kids were going to give me reason to worry for the rest of my life so I should just calm down and not panic about everything. So I decided to wait on having her evaluated. It wasn’t until my brother, who has never given me his opinion on how to live my life EVER, asked me if I had considered an evaluation, that I decided to make the call. I still didn’t think she had autism. She had hit all of her other milstones. She walked everywhere. She fed herself. She entertained herself. She was happy all of the time. Other than her speech issue, I saw no problems.
I called Birth 2 3, a state agency, because that’s who does these kinds of evaluations where I live. The evaluation was free and they came to my house to do it. When I spoke to the evaluator on the phone she warned me that its hard to qualify for services and that made me feel confident that they were going to evaluate her and call me a crazy worrier. That gave me some comfort but it was short lived. The evaluation wasn’t even fnished when the teacher told me that Michelle was definitely going to qualify for services. I must admit I was surprised. Even more suprising was when they told me that she had failed the MCHAT. The MCHAT is basically a test given to all toddlers to see if they have behaviors consistent with an Autsim Spectrum Disorder (ASD).
I remember being speechless myself. I had a million thoughts floating in my head but was unable to verbalize them. Then the evaluators told me that Michelle qualified for speech services from a state program and due to our familys size and income we only had to pay $16 a month. That was an immediate relief. Help- thank goodness- I don’t have to figure this out alone. They also told me I could do the follow up to the MCHAT, the ADOS, at any time I felt comfortable. A child with autism can only be diagnosed by a doctor or psycologist, and not early intervention teachers who perform the initial evaluation.
We got set up with a program in our area and started services a few weeks after the evaluation. Our coordinator, Laura, was amazing. She explained so much to me in so many different ways. She was great with Michelle and she made herself availble to me at any time to call or text with any questions. I told her from the start that I didn’t want to do the ADOS just yet because I wasn’t covinced Michelle had autism because, again, the only red flag I saw was the speech. I did tell Laura to be honest with me and that once she got to know Michelle better, she should tell me if Michelle needed to be tested. After all, she’s a specialist trained to look for warning signs.
In addition to the state services we were reciveing, we decided to put Michelle in a daycare/preschool three times a week so she could have some peer interaction. At the time no one in our circle fo friends had toddlers for her to play with, only babies. I thought if I sent her to the school then she would see kids her age talking and she would want to copy them.
It was hard to send her to school. I am a stay at home mom. The whole point of that was to avoid child care costs and for me to be with my babies during this special time in their lives. But I knew she needed the help so I begrudgingly send her. Turns out this was one of the best choices I could have made. She LOVED going there. The teachers loved having her and she really enjoyed being around the other kids. I saw so many improvements- most in areas I didn’t even think she was lacking in. She started to do a little pretend play. She would let me read her stories without her furiously turning the pages so I couldn’t get a word in. She wanted to color.
Yet for all the good there were disappointments as well. After 2 months at school and with visits from Laura, she still wasn’t really talking. She would not sit down for circle time. She couldn’t eat at the lunch table for more than a few minutes. She still flapped her arms in an excited fury. She still wouldn’t point to objects or show any intrest in playing with any friends. I could see the difference in her behaviors versuses that of her peers. It seemed as though there was an ocean between her and them. These kids said “hello” and “goodbye” and “I love you, Mommy.” Michelle has never said that to me. It broke my heart to realize just how behind she was. It’s not that I needed her to be just like the other kids, but the fact that I was unaware that kids her age were doing so much. It was then that Laura, my husband and I all agreed she should be tested.
Now we reach the point I started this saga with. I knew my daughter had autism. I had finally realized and accepted that reality. Now I just had to wait 6 weeks for a professional to tell me what I already knew. I anxiously awaited the day of the ADOS. I had a mental countdown going on inside me. Some people might have dreaded it, but I couldn’t wait. It was like waiting for something I desperately wanted. I actually wanted them to tell me that she had autsim. The longer I waited the more I could see the autistic behaviors in her come out. She was spinning in circles. She would shake her head back and forth looking for sensory input. The day she started lining her toys up I considered calling the agency up and demanding they come perfrom the evavluation immediately. It was just so painfully obvious and I wanted her to start her thereapies instantly. I’m rather impatient if you haven’t guessed.
Then the day for the ADOS finally arrived. I think the exact words they used were, “She does meet the criteria for an Autism Spectrum Disorder.” Those may have been the most comforting words I have ever heard. Finally, I knew why Michelle wasn’t talking. Finally I knew it wasn’t my fault. I hadn’t failed her or caused her to stop talking. It wasn’t my fault that she had never really wanted to breastfeed as an infant. It wasn’t my fault she didn’t want to interact with others. I didn’t have to feel guilty because these things and so many little others were beyond my culpability. I wasn’t a bad parent with an uncontrollable spoiled child who couldn’t sit still or behave. It sounds strange but hearing that she had autsim was the greatest relief of my life. The relief was also because I knew what would come next. I wasn’t alone. Michelle would be transferred to a new, autsim-specific program. We wouldn’t be crawling around in the dark, throwing ideas around as to how to target her issues. We were going to be working with a team of specialists who were going to know what to do.
Don’t misunderstand me. I wasn’t glad that my daughter had autism. I don’t want her to have autsim. I don’t want anyone to have it. I would give anything to not have to see her struggle with this disability and it’s something that I may spend the rest of my life worrying about and coming to grips with. My relief was in finally knowing what the problem was and knowing that I would have support from a team of specialists who know how to work with children with this problem. I now had the confidence that despite this disadvantage she would still grow up to live a rich and full life. She will learn to communicate more effectively (she already is), she will learn to focus, and she will grow up to be an amazing woman who is happy and fulfilled.
This doesn’t mean that I think this will be easy or over quickly. I know there will be bad days or bad weeks and moments I feel as though I should give up. But I also know that with the proper help she can have more good days, or maybe weeks. I still have no idea how we are going to get there, but for now, just feeling it is a constant comfort and that’s enough for me right now.