Long Term Consequences (Of Lives started too soon)

“They’re doing just fine.” It is something I have heard numerous times in the past 4 years and something I really wish people would stop saying. The fact is, while it may appear my children are doing just fine, they are not. I stated a long time ago that we wouldn’t know the full effect of prematurity until the boys get older. In my heart I knew I wouldn’t be able to breathe easy until both boys were in elementary school. We are slowly starting to see signs that both Jayden and Matthew did not escape their rocky starts to life unscathed. Each seem to have some lasting, possibly long term consequences of their lives being started too soon.

Jayden puked for the first 18 months of his life. He received both feeding and speech therapy through early intervention and “graduated” at about 19 months. From 19 months to 3.25 years I fought to get him qualified once again for speech services. Finally last November the speech therapist through Kaiser told me “yes, he is moderately delayed and does qualify for services”   and I cried. Not because I was upset he was delayed, but because someone finally heard my concerns and my son would finally get the help he needs. Currently he is receiving speech therapy every other week until a spot opens up for weekly sessions. In the spring I brought him back to early intervention to see if he would also qualify for speech through them. They looked at our history of evaluations and services and one woman proclaimed “wow, you have been asking for help for years”. I wanted to scream. I told her “I have been banging at your door for 2 years begging you to help my child. Only to be told ‘he is delayed, but 20%, not 25%. So we can’t help you’”. Given the evaluations from his current speech therapist as well as the results from their own assessments, he was finally qualified and will start receiving speech during preschool this fall. He has so many speech sound errors that when combined his intelligibility to an unknown listening is low.

In addition to the articulation disorder, Jayden’s preschool brought to our attention some sensory issues they are noticing with him. Specifically chewing/putting everything in his mouth, constantly touching things/people, He is always taking his shoes and socks off, HATES his hair/head being touched (although we are making progress with hair washing), and has difficulty sitting still even for a few minutes. I have long noticed some of the behaviors they mentioned and brought them up at his last EI intervention in March 2015. They said he did show signs of sensory issues, but again, not enough to qualify. Now that he is over the age of 3, his sensory issues must have an impact on his ability to access the learning environment, which according to Child Find, they do not. So while his IEP will have sensory accommodations, he will not receive occupational therapy.   And while I believe there are some sensory issues at hand, part of me has a hard time sorting those behaviors from “typical” 4 year old boy behaviors. Where does the 4 year old boy end and the sensory issues take over?

Matthew has a whole other set of issues that are both a result of his prematurity and also mostly likely an unfortunate mash up of my husband and I’s genetic material. His food (peanuts, lentils, and black beans) and environmental allergies are sadly a result of his DNA of which he would most likely have even if he had been born on time.

With regards to his prematurity, Matthew has some gross motor delays is pointing to a mild cerebral palsy diagnosis. As the months zoomed by and he still wasn’t making much progress on the walking front, I called and scheduled an early intervention evaluation for him. His pediatrician wasn’t concerned but that mom voice inside of me was starting to get louder. I have been concerned about stiffness in his legs since he was about 6 months old but have consistently been dismissed. He was found to be significantly delayed in his gross motor skills by Child Find and we were assigned a physical therapist who meets at our house once a week. Within 10 minutes of our first session she was able to confirm my suspicions about the tightness in his legs, specifically his left. She also commented on how his gait is off when he does walk. I had mentioned that his left leg seemed to swing spastically around when he was pushing something (the only time he would walk at the time). When she asked about his birth history and his APGAR scores (1 at one minute 6 at 5 minutes) she asked if I knew that those were poor numbers. I looked at her and said “of course I do. Why do you think I am concerned about his movement?” She also asked if I knew anything about cerebral palsy.   After a few months his physical therapist grew concerned about his oral motor skills and excessive drooling. She suggested we have an occupational and speech therapist evaluate him while he is still under the part C umbrella. The occupational therapist recommended once a month sessions while the speech therapist will be coming once a week. Because we have added services instead of removing them, I contacted his pediatrician and asked whether we should pursue a formal cerebral palsy diagnosis. My concern is that after he turns 3, without a diagnosis, it may be much harder for him to continue to receive services under part B.  She was in agreement and we are now waiting for an appointment with a pediatric neurologist.

There are times when I find myself wondering what life would have been like had the boys been born on time. Would they have the struggles they have? Would I have to know terms like “age inappropriate sound errors” and “spastic gait”? At times if feels like the weight of our world is too heavy to carry alone. Yet it becomes infinitely heavier when family and friends make comments like “they’re doing just fine” or “it could be worse”.  It makes parents like me feel even more isolated and alone.  Of course I know it could be worse. Jayden was born at 31.5 weeks gestation. We are extremely lucky that speech and sensory issues are all we are dealing with. Matthew, while only being 5.5 weeks early, was born “floppy, lifeless, and blue”. If we are in fact dealing with cerebral palsy, it is a mild form that doesn’t seem to affect cognitive or fine motor skills. I am acutely aware it could be a whole lot worse.  Our reality however, is that they are not “doing just fine”. I have fought to get them the services they need and they have fought so very hard to get where they are today. They still have a ways to go though. So the next time a parent of premature infant opens up to you with their concerns, do not dismiss them with comments like “they’re doing just fine” or “it could be worse”. Listen to them. Ask questions like “what specifically makes you think there is an issue?” and “how can I help you ?” and realize just because the child is out of the hospital and appears to be doing well, looks can be deceiving. Understand it may take years to see the long term consequences of their lives being started too soon.