by April Defillo
My son has a global developmental delay - here’s how I knew. As a first time mom, I did ALL the research. I watched videos, read books, talked to parents and soaked up all the information I could. As you can imagine, no amount of research can prepare you for what life is actually like with a newborn. When it comes to infants, there’s one recurring word most moms hear and know. That word is milestones! Every month there’s a new set of milestones your infant should reach and it’s the bible for whether or not your baby is “normal”.
My son was delivered three weeks early. At first, he was spot on three weeks delayed by his milestones. It was never a big enough gap to show concern. However, when he was eleven months old he was not crawling or showing any signs of a desire to get from point A to point B. After many conversations with family members I decided it was time to intervene and have him evaluated.
The evaluation blew my mind. While I had only noticed his gross motor skill delay they noted several delays and a potential for autism. He began receiving services and fortunately has done really well. As a mom, worrying can be a part of what we do. After his evaluation, I watched, judged and compared everything he did. I was in a world of unknowns and trying to learn daily what I could do to help set him up for success.
Milestones are based on the average baby or child.
Here’s what I learned. The first is probably one of the most important bits of information. Milestones are based on the average baby or child. If 50% of babies smile at three months, that is how they determine three months as the age appropriate time for a baby to develop that skill. The CDC, however, bases their milestones on 90% of babies or children. That said, in my opinion, if your child has not reached a milestone in the time frame listed by the CDC it is probably time to show some concern. As we all know, every child is different but I think when your child isn’t reflecting skills MOST children their age are it’s time to reach out for second opinions.
The second thing I learned is that specialists matter. My pediatrician was immensely thorough but my son had no glaring red flags for her. She is trained to look for surface level milestones. Had I waited for her to be concerned, my son would have gone several more months without services. That’s not because I have a bad pediatrician. It’s simply because she does not specialize in evaluating children for autism or global delays. My son’s signs weren’t glaring. I mostly point this out to say, evaluations can pick up things your pediatrician doesn’t. If you feel something is wrong, there is no harm in having your child evaluated despite your pediatrician not recommending it.
Early intervention programs can be difficult to access
Early intervention programs are designed to help children with two or more delays. If your child is only experiencing one delay, it will be harder to receive services (especially free ones). This is something I was never told by my early intervention program. I’m only aware of it because of having a friend who is a social worker and has experience in birth to five services.
The diagnosis can be difficult to hear
Lastly, getting a diagnosis can be difficult. I can remember the unnerving feeling I felt when my precious baby was first diagnosed. There’s so much uncertainty on what the future will hold for your little one. Take the time you need to process the information, lean on the people who bring you comfort and strength but also advocate for your little one.
The earlier you seek help, the better the chances for closing the gap. In my opinion, additional services (speech, occupational, special instruction, etc.) can and should only help your little one. If you feel they aren’t, don’t be afraid to ask for a new therapist or ask to change goals and approaches. As with anything in life, you get what you put into it.
Also, be prepared for push back. Everyone (including you) loves your baby and thinks he/she is perfect. Because of that, it is not uncommon for people to question the severity of the diagnosis for your little one. I’ve spoken to several moms with children with special needs and they all can recall a time where someone pushed back on their child’s diagnosis. They usually mean well, but as I mentioned with the pediatrician earlier, trust the professionals. I have personally disagreed with parts of my son’s evaluation. It is hard to have your child’s capacity judged by a 45 minute evaluation when you are with them around the clock and know what they are capable of doing. But, I urge you to trust the process.
Visit the CDC’s Learn the Signs, Act Early program: https://www.cdc.gov/ncbddd/actearly/index.html
This is where you can find information on milestones and resources to help you navigate parenthood.
April Defillo has worked in operations for eight years. She is the mom of a toddler. When not chasing him around, she enjoys reading and journaling. She considers herself a life long learner and looks forward to learning and growing throughout these blogs.