When I talk to people who I have not seen for some time about Charlie and his progress, treatments and plans it is very common for them to ask me how we knew to even start the process of having him evaluated or more commonly how did I know something was wrong? We are not overly paranoid parents, we are actually pretty laid back about most things and in some cases I often worry that we are too relaxed when it comes to this whole parenting job. That being said, I was always very cognizant about the red flags of autism in young boys especially and kept a close eye on any articles that were sent to my inbox as a result of signing up for newsletters and websites while I was pregnant.
I fill out a lot of paperwork – I mean a lot! Everytime we have a new appointment with a therapist, doctor, etc. we are sent a stack of papers to complete. As part of this process, we are asked to recall the age at which Charlie met certain milestones back to when he was just a few months old. Being forced to look back at a time when we were new parents, had just introduced a new life into our home and were navigating our new world is both challenging and enlightening. I first brought up my concerns to our pediatrician when Charlie was 15 months old – areas that were “red flags”as so many books and websites would label them such as lack of eye contact, repetitive behaviors, lining up cars and toys, little to no engagement or recognition when playing with us or others, lack of verbal communication, etc. But if I am being really honest, I had a strong feeling that something was off back when Charlie was just an infant of 3-4 months old. I can remember holding my little boy in my arms in the rocker in his nursery while singing songs and playing. I can remember gazing into those beautiful eyes only to find that my infant would consistently break eye contact and look away. When he was about 6-8 months old, he was loving and affectionate at times but at other times he was way to content with being alone, not being engaged, zoning out in his own world. As first time parents, we thought we had lucked out with Charlie’s ability to not need constant attention but it turns out it was yet another red flag that we were unaware of at the time. I see this even more clearly now having my second child who could beat me in a starting contest and is extremely engaged at all times.
When Charlie was 18 months old, we contacted NJ early intervention and thus began the process; his evaluation was scheduled for that July and following a few meetings and a 2 hour evaluation of Charlie he was diagnosed as being eligible for services with cognitive delays, communication delays, and social/developmental delays. When we initially received his scores, I was devastated. I could not go to work that day and cried for hours on the phone to my mom. I remember thinking I needed to quit my job immediately to focus my attention and efforts on helping Charlie. Things calmed down a bit and we started doing occupational therapy and developmental instruction once a week at home. I wanted speech therapy but was advised that because Charlie was under 2 years of age, he was not really eligible for speech at that time and they were much more concerned about his cognitive development as opposed to speech. In other words, the focus needed to be on helping Charlie to understand concepts and ideas as opposed to actually talking or saying specific words.
So the therapy sessions continued and it was extremely eye opening, helpful, valuable and at times frustrating. We spent a lot of time and money setting up our house in just the right way per the therapists suggestions – we moved toys away or out of reach, we labeled items, we bought special brushes to brush Charlie’s body when he needed a sensory outlet, we filled bins with beans for him to play with, we had to SLOW DOWN and work very hard at changing the ways in which we interacted in order to accommodate his needs. We had meetings and evaluations, we engaged a private speech therapist locally, we got weekly progress reports that I still have in my binders and we had touch base meetings with the case manager to determine new goals and services moving forward. For someone who is not involved in education or has no background in that arena, this was very overwhelming and scary but we had wonderful therapists and felt good about the steps we were taking to help Charlie.
About 7 months after starting with early intervention, we were finally approved to receive speech therapy and we were lucky enough to be assigned to a woman who I had attended a course with a few months earlier (the program she taught is the Hanen program and I would highly recommend it to anyone who is interested). The speech therapy was very helpful in that it taught both Jeff and I new and different ways in which to help Charlie identify his needs and wants and it also taught us what to do/what no to do when talking with Charlie. We continue to struggle with some of the tips and advice because the methods we are too use do not always feel natural to us but again it is a work in progress.
In between all of these sessions, evaluations and meetings, we took Charlie to see a pediatric neurologist and had him further evaluated. This DR recommended we have Charlie’s hearing tested and also recommended additional speech therapy. So, here we were – 1 speech session per week at a facility, 1 speech session per week at home, 1 developmental instruction session at home or sometimes at daycare, 1 occupational therapy visit at home. We had the hearing test and it was painful as Charlie does not like anyone touching his head or ears; I remember sitting in a chair with him on my lap and holding him down tightly while these little monkeys with cymbals were dancing in boxes…..it was weird. Turns out Charlie failed the hearing test and we were sent to an ENT for further evaluation. This led to being told he had a lot of fluid in his ears and we needed to get tubes. We scheduled the tubes in February and within weeks Charlie’s speech and communication increased dramatically, we were thrilled!! Unfortunately this is the time at which Charlie’s volume also increased significantly but you take the good with the bad I guess.
Fast forward to this past summer when we had to start the new process of having Charlie evaluated to determine if he would quality for the special needs pre-school in our township as he would be aging out of early intervention when he turned 3 in September. Typically they would wait as close as possible to his actual birthday in order to conduct the evaluations but based on the fact that I was due with our second son on July 30th, the team was very accommodating and willing to meet ahead of schedule in order to meet our goals. There were several meetings with the school social worker, teachers, therapists and psychologist as well as a full evaluation for Charlie at which time he qualified for the special needs school. Charlie transitioned out of early intervention in August and started at his new school in September when he turned 3. He continues to receive the necessary services at his pre-school and we are extremely pleased with what they offer to him daily. One challenge for us as parents now that we no longer have the early intervention services is that we are not a part of the therapy that takes place so we no longer receive the training or tips we found so valuable.
While we were transitioning Charlie to his new school, we finally got in for our evaluation with the developmental pediatrician. No one tells you about how challenging it is to find services for your children. We have been on the waiting list at CHOP two different times and I just completed new paperwork last evening for CHOP again. The wait is 9-12 months. We waited just a few months for the DR we saw over the summer/fall but he has a private practice so you have a shorter wait because insurance is not accepted. I mentioned this doctor in a previous post, he was wonderful and we felt very confident with his capabilities but unfortunately we saw him only a few times before he retired recently and so now we have started our search for a new developmental pediatrician yet again.
In between all of these doctors and therapists, we have attended group sessions at local centers, had appointments with child psychologists and met most recently with a consultant who does relationship development intervention. I am still learning so much about this world of childhood development and I do admit that I struggle because this is not an area that is something I familiar with intimately but we are navigating it slowly but surely and have been lucky to work with some wonderful and supportive experts. Quite honestly, there was a time where I texted with Charlie’s therapists more than I did with my own friends, that is how integrated these individuals become in your life – they are a lifeline, your support and your support system in so many ways.
So for anyone that is wondering, has questions or is unsure I would say just make the call. Having testing done is certainly not going to hurt your child or you and other than being a time consuming endeavor it will provide you with peace of mind if nothing else. If your child is fine and tests at average levels, than you will have the solace that you received confirmation; and if you go through the process and learn that your child has some delays and challenges and you need to start the process of therapy well than at least you can get started sooner rather than later. Avoiding the inevitable will only make it harder to start so from one parent to another all I can tell you is that taking the steps to gain control of what very little you can control will most definitely give you a sense of purpose and the knowledge that you are helping your child as much as possible.