This section was slated to be called Noah News. In writing my first post here, though, I’m realizing it’s about much more than news. It’s about a boy whose middle name is literally “Courage” and his courage, his willingness to do hard things and go beyond what is comfortable for him. So, we’ll move forward with Noah’s Courage. This is where we’ll keep track of Noah’s progress in speech, language, and learning in general. It is as much for me as it is for you. It can be disheartening to see all the things that Noah still cannot do. I need to see for myself what he is doing now that he was not doing last week or last month. If I don’t write it down, I forget. I forget that he could say only one word this time last year, and now he can say about 20. I mean, that’s pretty amazing stuff around here. I need to stay amazed.
A little background might be good. Noah was born at home with a midwife attending. In the first minutes after his birth, I told my midwife, “Look at his eyes.” She knew what I was talking about, as I had questioned her during my pregnancy about the risk of home birth in the event of a baby being born with Down syndrome. No, I didn’t know Noah had Down’s while I was pregnant; we didn’t so much as get an ultrasound and certainly no prenatal testing. Just, it was on my heart; and now I know God was preparing my heart first for the special baby he was knitting together in my womb. My midwife assured me that she saw what I was talking about but it was not “that.” Noah was born with good Apgars and did well in the days following his birth. The only problem was that he did not nurse well. He would start to nurse, and then his little tongue would get in the way, and he would wind up sucking on his tongue. The Monday after he was born (he was born 15 days earlier than expected, so my prenatal labs were in route at the time), my prenatal beta strep test came back positive. It’s unusual for that to be a problem, but doctors and midwives take it very seriously, because when it does create a problem for a newborn, it’s deadly. They treat it by giving the mother antibiotics, and those antibiotics get passed on to the baby in labor. I’d never been positive before, so we didn’t even think about it. But with Noah having feeding problems combined with my positive beta strep, we wound up in the pediatrician’s office that Monday morning. Labs were drawn on Noah to rule out beta strep for him, which did in fact come back negative. What the lab did find was that Noah was dehydrated, and knowing our conservative approach to medicine, the pediatrician had us take him home as long as we promised to supplement with formula and bring him back in to make sure he was gaining weight. That went well, and although Noah continued to struggle to nurse, I stuck it out because I had no reason to think he couldn’t nurse. Over the next few months, Noah was seen a little more often than usual to make sure he was gaining weight, and we did share our concerns about Downs with the doctor, but he assured us that while he could not guarantee that Noah did not have Downs, he felt very confident that if Noah had Downs, he would be showing more symptoms. He felt the low muscle tone would be more pronounced, he expected to see a simian crease, he expected more dramatic developmental delays, etc.
It was my midwife who saw Noah at 12 weeks I think it was who knew something was not right, he wasn’t tracking like he should, and she saw his Down’s facial features. She also picked up on his very slight heart murmur, another red flag for Down’s. She told me what she suspected and urged me to take Noah back to the pediatrician and have him take another look.
You know, for me, I didn’t want Noah to have Downs. I wanted a healthy, whole baby who could be anything he wanted to be, do anything he wanted to do. I wanted a baby with unlimited potential. So when his pediatrician indicated he still thought Noah was fine, I believed him. Of course, I was going back and forth at the time. There were days I felt sure Noah had Down’s and others I was sure he didn’t. I worried about all my babies when they were newborns for one reason or another, maybe this was no different. I spend hours and hours on the internet researching Down syndrome, just in case. I had sweet friends at church who tried to support us during this time, telling me that if it turned out he had Downs, we would be so blessed. “Those children are so loving, so special. They bring so much love into their families.” I didn’t want special, the love a typical child brough into a family was plenty for me. I felt like I was in limbo somewhere between a typical child and a child with Down syndrome, and they were rooting for Down syndrome. I was not. I was rooting for normal. Normal was good. At Noah’s 6-month check-up, I wasn’t believing the pediatrician any more, and we had him draw the blood for genetic testing. It came back positive – the very worst day of my life. I was crushed. I was not equipped. For all the dark days I’ve had in my life, this day was the darkest. My “perfect little family” wasn’t “perfect” any more.
After a few days of grief, I did what any mom would do. I started making phone calls, starting with Early Childhood Intervention. They came, told me Noah was so “high functioning” he only needed OT once a month, a one-time nutritional consult and did not need physical therapy or speech. (Note: While I believe Noah should have had much more therapy and that ECI was wrong to deny him that, I do not think the lack of therapy has harmed him in the long run. I would encourage anyone using ECI to obtain an independent evaluation to determine an appropriate frequency of services. You may have to fight to get what you want, but your tax dollars are going to support these services, and you deserve adequate care for your child, not the very least ECI feels it can get away with.)
The OT was great, but only once a month, and once he started walking we lost her and gained a physical therapist. I should add here that Noah’s speech was nonexistent. He was a silent baby, no babbling, no cooing. He had absolutely nothing to work with, so I was not very interested in speech therapy anyway. Once the speech therapist came, she taught us a few signs and brought some bubbles. The signs we picked up on and have gradually added more. I was not very impressed with the bubbles, and neither was Noah. I have read and heard that most babies and toddlers with Down syndrome respond well to speech therapy, they progress from bubble blowing to making noise to babbling to talking. Noah was still silent. I believe now that this is probably due to his apraxia; and I do not regret the decision not to pursue speech therapy. With our busy schedule and his lack of interest, it was not a good fit. So he didn’t say vroom when playing with his cars, didn’t say choo choo, didn’t imitate noises, nothing. For four years, nothing. ECI stops at age 3 and children with special needs are absorbed into the school system. We chose not to pursue the school system, we have good insurance, and Noah was not seeming to benefit from therapies. So he had none between age 3 and 4. We started pushing sign language sometime before he turned 4. For a long time it was just “more”, “eat”, “drink” “milk”. At around age 4, he started to seem to want to communicate more, and through www.lifeprint.com, www.aslpro.com, and the book Signing for Instructional Purposes, I was able to learn a good number of signs, and he was a good learner. By the time he was 4-1/2, he had a signing vocabulary of about 50 words, and by June of 2011 he was starting to vocalize and had said his first few words (purple, mama, papa, blue, moo) as well as nine word approximations (please, deer, tuh, juice, milk, woof, baa, up, and more). It was at this point that I felt something could be accomplished in speech therapy, and we had a great therapy center right in the town where we live. We love Noah’s speech therapist, and he has had a few months of physical therapy as well, with a fabulous physical therapist. We have a family friend who was once a speech therapist. She comes to the house on occasion to play with Noah and gives him language-rich play time. I have found this also to be beneficial. Noah seems to respond well to her style of play, and I think putting him in a variety of environments stimulates his desire to communicate with sign and speech.
At this point, Noah picks up new signs every time there is a new one introduced. He has a strong desire to communicate, and even when he doesn’t know the sign, he usually finds a way to get the idea across. Speech wise, most of Noah’s speech is only in response to imitation or at the very least cueing with questions or gestures. But I have hope, because at this point a lot of his signing is spontaneous, but he first only signed in imitation or responding to cueing as well. I want Noah to speak; I am hopeful and am planning for speaking to be Noah’s primary mode of communication. One of the things I’ve noticed about raising Noah is that in most learning experiences, Noah needs baby steps. He cannot progress from hearing words to saying words, like typical children can. This is true of many children on the autism spectrum as well. Sign language and PECs are those baby steps for Noah. We look forward to walking those baby steps with you. Drop us a line, let us know who you are and where you are at on this journey. Neurotypical, special needs, Downs, ASD, therapists, parents, relatives, friends, even the curious – you are all welcome here.
And I almost forgot – how could I forget? Today I find myself so thankful that the Lord gave us a child with Down syndrome. Noah makes our family three-dimensional when we didn’t even know we were two-dimensional. He reminds us that God’s ways are not our ways, and he has taught us that God’s plans for us are so much better than our plans for ourselves. Noah’s laugh, his smile, the way he comes and snuggles in bed with us each morning, they all give me reason to rejoice. And the joy and thanksgiving that comes with each new thing that Noah masters is beyond description. I love what God loves – and God loves Noah!!!!! And you know what? He loves you too! Be blessed.