Jacob is one extraordinary little boy. He is my first born son, my middle child, and probably the sweetest AND the most challenging of all three of my kids. Before I describe some of the details around my handsome little man Jake, I need to provide a little context. Isabella, my oldest, was a tough baby for the first 3 months (she did not sleep much, not a great nurser, and colicky). Around 4 months Isabella became a much easier baby, and I became a much more sane and confident mom. Other than our rough start together (more on that in a future post), Isabella was great. She hit most of her milestones on time or early. She was social, adorable, engaged, active, and it seemed like she was progressing and learning new things every day. We felt like we had the hang of this parenting thing and thought we could do this again.
We decided to start trying for a second baby when Isabella was just 8-9 months old because of some of the fertility issues we had. We did a failed round of IVF in the summer of 2008 before successfully trying IVF again in October. I had a very good pregnancy and a much better delivery than my first one because it was a scheduled c-section. I was thrilled to have my healthy baby boy, a big boy at 8 lbs, 4 oz. He was a much easier baby than Isabella that first month – eating well, sleeping often, and easily soothed. At about the one month mark he started having some reflux symptoms that were making him fairly unhappy – spitting up frequently, lots of spit bubbles, stomach/GI pain, and fussiness. Our pediatrician confirmed that it was reflux and we started him on some reflux meds, I altered my diet to try to eliminate things that might be bothering him, and we let him sit and sleep on an incline as much as possible. At around 3 months, I started to be get all “psycho mom” with worry and doubt about his development. My mother’s intuition told me something was just not right with my baby. He was not really smiling very much and just did not seem very engaged or interested in his surroundings. Les and our pediatrician tried to reassure me over the next few months that he was fine and that it could be discomfort from the reflux, or he might just be a late developer.
There were a lot of little things that worried me in those first 6 months with Jacob. All I had to compare his development to was his older sister who did everything much earlier than Jacob was doing things. Many people said that boys develop differently and that I had to just be patient and not stress so much. My husband is in the medical field, and I know enough about a little to be dangerous. I was worried about Autism primarily, but there were other scary disorders I did not want to even fathom. Even Les started to worry at 8 months when Jacob was not sitting, was not really playing/engaging with toys, and not getting around at all. Dr. Lewis, a pediatric neurologist at CHKD, diagnosed him with hypotonia, or “floppy baby syndrome”. He reassured us that he would eventually sit, crawl, walk, and talk. As for some of the other things I was worried about, like skin issues (eczema and rashes), speech delays, and some of the sensory and temperament concerns, we would just need to wait and see as he got older. Jacob did finally sit up at close to 10 months, crawled at a year, and walked at 18 months.
I got him in early intervention services at 8 months for physical therapy, speech therapy, and occupational therapy. The therapists were so helpful with all of Jacob’s issues – physical, sensory, speech, play, and feeding – and with all of my concerns and fears. I try to tell anyone who has concerns about the development of their kids about early intervention services. No doctors told us about these services that are available in every state. I found this on my own, as so many concerned parents do when researching ways to help their child. Jacob received services from his early intervention therapists, and from private physical therapists at CHKD, until he was two. We will never know where Jacob’s development would be without the early intervention services, but that is sort of the point of these services – to not have to know what a potentially worse outcome would look like. Jacob was certainly not a “typically” developing boy at 2 and he is still not at almost 3, but we are making progress (more on Jacob from age 2 to 3 in Part 2).
As a parent, you worry about all of your kids. If you have a healthy, typically developing, smart, talented, and well-behaved kid (like Isabella and Noah) you worry about something going wrong in the future, you fear the unknown, and you worry about how smart or talented or well-behaved they are compared to their peers. With a child with developmental delays, you have many of those worries, plus the real fear and concern about their present issues. You wonder if the diagnosis is right, you wonder if you are missing something, are you doing enough, are you pushing too hard, are you giving them enough time and attention with therapy, will they ever catch up and lead a “normal” life. I could go on and on about the list of worries I have had with Jacob. Add to that, a heaping serving of guilt and self-doubt (is this my fault, something I did or did not do to cause this?), and you have some serious parenting stress. I know this was true for me and it is true for so many other parents of kids with developmental delays and health concerns.
I am sure I will have many more posts about our journey with our wonderful and special son Jacob. In spite of Jacob’s delays and all the fear and worries I have had about Jacob since his first few months, he is such a sweet, sensitive, adorable little boy. When he does reach those milestones, like walking for the first time or saying a new word or playing with a toy in a “typical” way, they mean so much more because we know how hard fought the journey was to get there. Many of these moments have brought tears to my eyes – tears of joy, relief, and immense parental pride. I hope that sharing our journey with Jacob, might help those who are curious or who may be going through something similar. Please share your experiences and your journey with me. I have learned so much from others going through similar experiences and look forward to continuing to help each other in the future.