What if my baby isn’t developing normally?
From the moment I found out I was pregnant with my first baby, like many, I found myself dreaming of how my dedicated mothering would result in a perfect child. I was careful to leave room for my imagined child’s own choices and interests and various other characteristics that would make him a unique person. My goal was not to control him but to give him the best start in life through love, attention, security, good nutrition, exposure to educational experiences, and unending patience. It’s easy to plan on meeting every need when the challenge of the live baby hasn’t yet arrived. Without realizing it, I linked his ability to develop into a well-adjusted individual to my ability to adequately mother him, and I hadn’t even met him yet.
Many of the usual tasks on the perfect baby checklist were tackled: balanced diet during pregnancy, natural
childbirth, breastfeeding, babywearing, lots of direct attention, and organic baby food. Despite my morning sickness resulting in the loss of 16 pounds, I did my best to eat healthy foods. Of course, the all-too-common story of a planned natural childbirth turning into a C-section happened to me. I not only had an epidural but general anesthesia as well. Luckily, my dedicated support system helped me through my breastfeeding challenges, allowing me to nurse my son well beyond the first year. I scheduled time into every day to play games and engage him with other activities that focused on his development, and by the time I started my son on solid foods, I was sure I had made up for his difficult birth with all the breastfeeding, babywearing and organic foods. Clearly, my careful mothering was, in fact, making my baby perfect!
It wasn’t until my son was close to three years old that I started to question if his little quirks were a sign of a larger developmental concern. Some of his unique interests during his first few years included an unusual fascination with wires, shoestrings, and any other string he discovered; staring at escalators for long periods of time; and an intense attraction to flowing water, such as drinking water fountains, running water hoses, the kitchen sink sprayer, and the larger water displays at malls. I know a lot of kids are attracted to water, but my son only wanted to stare at the running water rather than play with it, and he would shriek as if his life was being taken away if we either stopped the running water or took him away from it. I didn’t know that all of these interests fell under the category of visual stimulation.
Developmentally, just before my son turned three, I noticed that he didn’t seem to understand what I was saying as much as other kids. Still, he had a great vocabulary. I figured he was okay if he could talk. My pediatrician and his daycare providers also assured me that they had no concerns. After checking off all of his milestones on developmental checklists, I was certain he must be fine.
Finally, about a month after my son’s third birthday, I realized that there was a clear difference between his communication skills compared to his peers. I had to use specific phrases and vocabulary for him to understand me, and he just didn’t seem as aware as other kids. I took him to Project Enlightenment for a developmental screening, and then he was referred to the public school system. The school system met with my husband and me several times, observed my son, and finally completed a formal developmental evaluation. The whole process took six months, but at the end of it, we found out what was going on with our son: autism.
How did I feel? Devastated! I was trampled by the news of my obvious failure at mothering. With all of my hard work and effort, I was supposed to have a perfect child. If he had a diagnosis as horrifying as autism, I felt I must have missed some essential ingredient in my recipe for being the ideal mother. For years I had met other women who had kids with autism. Not knowing my situation, I had always felt so bad for those mothers; I admired how they appeared to have a positive perspective of life when their children faced so many challenges. Now I was one of those mothers, and I didn’t feel positive at all!
It took time to grieve the loss of the child I imagined, the child I thought I knew. Knowing that social skills are so closely tied to a fulfilling life, I wondered how my son could find a place in society with a diagnosed social disorder. Would he be the “weird” kid? Would he be bullied? I had always had the impression he was so smart, and now I was being told he was cognitively delayed. Would he always be delayed, struggling to keep up with his peers? People on the spectrum are known for having trouble understanding humor. Would I not be able to laugh and tell jokes with my son? He seemed to enjoy humor, but maybe it would go away? Would he be able to go to college? Get married? Have his own life?
My son, Andrew, was diagnosed with autism two-and-a-half years ago. How do I feel now? First, he is really funny – and in an annoying way like any other six-year-old, making his humor somewhat typical for his age.
He still struggles with some academics but manages to perform on grade-level. Though he’s in a special education kindergarten class, he is doing the same work as other kindergarteners in regular classes, and he will likely be in a regular 1st grade class next year. Andrew is smart, creative, skilled at art, good at solving real life problem. He has friends, enjoys going places, loves and protects his younger sister, voluntarily gives me hugs, and is very inquisitive. I enjoy spending time with him and am fascinated with who he is as a person.
We have been so lucky that all of his preschool teachers and his current teacher are absolutely awesome. Every teacher has taken the time to get to know him and find strategies to work around his challenges. I am so hopeful that he will continue to have such dedicated and talented educators throughout his future school years.
Andrew does have some challenges. The motivation is not always there when he has to complete tasks he does not like. Some concepts are difficult for him, and his fine motor skills are inconsistent. In addition, his stimulatory behavior involves making odd sounds while running around. If he starts to “stim” in public, people do look at him oddly, knowing something must be different about him. I am hopeful that he will be able to embrace more socially compatible outlets for stimulatory expression as he gets older.
I’m not going to say I wouldn’t change a thing about him, as I notice many other people say that about their disabled kids, but I also won’t say there’s nothing I would change about myself. I think it’s okay to admit we would like for things to be different while simultaneously working on accepting people and ourselves as we are. I do appreciate everything about my son: the good, the bad, and the lessons he and I learn from his challenges. We will both grow as people by working together.
What do I recommend for parents who are worried about their babies or toddlers? We all constantly hear and read the message that babies develop differently. Developmental milestones have a wide window of time for when they should be mastered, and anytime in that window is acceptable. It’s good to find out exactly how late is okay for your baby to master a skill. With this knowledge, you are able to remain somewhat more calm if everyone else’s baby is sitting up at six months if you know your baby still has as couple more months to be on target for that milestone.
When I checked the lists for developmental red flags, my son never showed any of the major symptoms of autism. Now that I know more about child development, I realize that my son’s receptive language and problems with joint attention were clear indicators of his disorder by eighteen months of age. Receptive language is what your child understands. It is more common for people who have concerns about their child’s language will say their child understands everything but doesn’t say much. The child who understands most of what he hears likely does not have autism. However, if you worry that your child doesn’t understand as much as his peers, you may want to investigate further. Children demonstrate joint attention when they are having trouble with something and look up at you, hoping you will help. A child with autism who struggles with joint attention will continue to stare at the toy while crying, never looking for someone to help. Another form of joint attention is when a child sees something of interest and wants to share it with you by bringing it to you or by pointing at the object. Children with autism aren’t as aware of you being a separate person and don’t realize you may not already see what they see. While it’s not necessarily a problem if your child doesn’t point right at twelve months of age, within a few months of her birthday, she should be clearly making an attempt to show you what she sees.
What would I do differently if I could start over with my son? My son has improved significantly since receiving intervention starting at three-and-a-half years of age, but earlier intervention is always better. Now I always tell people to follow their gut feeling and to not take too much of a wait and see approach if their child is showing signs of a delay. True, many children do catch up on their own, but testing and possibly some developmental therapy will only help. Both evaluations and therapy are designed to be fun for children; I do not know of any drawbacks to getting a child tested.
Delayed intervention is a loss of the most effective time to make dramatic improvement in a child. Though my son had an age-appropriate vocabulary, he did not talk as much as other children, and I made the mistake of assuming he was just a late talker. I was not aware of the many resources available for determining if he needed help.
What resources are available for parents who have developmental concerns about their children? If your child is under three years of age and in Wake County, it is best to contact the Children’s Developmental Services Agency (CDSA). You can call them about any concern you may have, whether your doctor agrees with you or not. Their evaluations are free, and they emphasize that it is better to call them sooner rather than wait and see if your child improves. I personally think it’s best to work with the CDSA before your child turns three because they work very quickly. They come to your house to evaluate and give you the results the same day. Then they arrange for any necessary therapies to take place in your home.
If your child is three years of age or older, the public school system is the only free option available for investigating questions about your child’s development. Though the entire process takes at least six months, if your child does have significant delays, he or she may qualify for free therapy and possibly specialized education through the school system. They have half day and whole day special education preschools.
You may wonder if you should check with your pediatrician before asking any of these services to evaluate your child. Yes, definitely bring up your concerns with your pediatrician; however, don’t wait for his or her permission to proceed if you are worried. Unfortunately, pediatricians’ knowledge and training is mostly focused on medical care, and many of them do not know how to properly address all developmental differences. It is common for pediatricians to miss problems when they could have been detected much sooner. Your child’s development is a place where you are the only expert until you meet with a developmental specialist.
What if I think my baby or toddler is doing great? Most children are developing normally. Just be sure to take the time to check off developmental milestones as they happen. So many parents share that their children meet developmental goals long before the indicated time on the chart. If your child shows all signs of rapidly growing into a social butterfly, enjoy her! Our children want us to have fun with them, and I definitely enjoy my son!
Tags: apex, autism, autistic, baby, baby milestones, cary, chapel hill, child evaluation, developmental delay, developmentally delayed, durham, is my child delayed, milestones, project enlightenment, raleigh, smart momma, smartmomma