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I feel like I need to preface this post by saying that I understand that many parents and children face challenges that are bigger and harder than ours. I in no way want to detract from their journeys and I do understand and feel grateful for how lucky I am to have three healthy, happy children. While my youngest son is developmentally delayed he has no physical abnormalities and will eventually catch up to other children. What follows is a piece I wrote on a monumental day in my journey with my littlest man. It has seemed hard to us, it has at times felt overwhelming, but I have felt honoured and grateful for every minute.
Jude Took His First Step!
Yesterday at Occupational Therapy my youngest son took his first step. He is 16.5 months old and we have worked with the OT since his first birthday. His progress has been nothing short of amazing and I am grateful for all the help and support we have received. So how did we get here?
When Jude was born he was a very anxious baby. He wanted to be in my arms and have my boob in his mouth all the time. Every time I took him off the breast, or handed him to someone else he would panic and scream. As a result I had him on the breast constantly and I held him 24hrs a day. I handed him to my husband to scream for 5-10 minutes every night while I showered and that’s it. Apart from that he was in my arms. I am in no way exaggerating this. I wore him in an ergo baby carrier when my arms got tired. We found out soon after birth that he had severe reflux. He was in constant pain. One night he had so much thick mucus in his mouth that he could not clear it. He was going red in the face and started clawing at the air and could not breathe. My quick thinking husband flipped him on his stomach and gave some back blows, which cleared the mucus, and he took a big gasping breath. It was very frightening, and from that point onwards he was on medication to control the stomach acid. The only way he could feed was small amounts and often. I had been instinctively doing the right thing by feeding him on demand (which for him was every 15-20 minutes around the clock). I just resigned myself to the fact that I would feed him that way as long as he required it.
Jude could not be flat on his back or stomach. The pain was unbearable for him. He had to be upright, even during nappy changes. This meant rolling him on his side to change him rather than bringing his legs up and tucking the nappy under. He did not get to experience much tummy time or spend time lying on his back playing on the floor as this was extremely painful for him. I tried sitting him up in rockers and baby seats but he would not have it. He wanted to be in my arms all the time. It wasn’t until he was about 5 months old that he started to space his feeds further apart from the 20 minute intervals we had been used to. He went to every hour at that stage, and by 6 months was every two hours (which is considered ‘normal’ for a newborn). At around 6 months of age he began allowing me to put him on the floor for short periods of time so long as he was in an upright position. He still would not lie on stomach or back. His reflux still caused him pain in those positions. I bought a u-shaped pillow and sat him in the middle of the u-shape on the floor. In this way he learned to sit up by himself at around 8 months. Other children were crawling and becoming mobile and he was just learning to sit up. He still would not lie on stomach or back.
At around 11 months he began shuffling on his bottom from a seated position to reach things in the room. This progressed rapidly into a fast scoot. We call it ‘bum scooting’. Jude scoots at rapid speed everywhere he wants to go and even has one hand free to carry toys or play with things. At around 12 months he began to tolerate tummy and back time, but only in small doses.
I took Jude for his 12 month check-up and some red flags were raised. He was 12 months of age and couldn’t roll from front to back and back to front. He had never crawled. Not only was he not pulling up to stand but if you supported him from under the arms he would not put any weight in his legs, he would just let his legs go floppy and sink to the ground. Babies as young as 3 months of age will support weight on their legs when held in this fashion, but at 12 months Jude would not. He had ‘clicky hips’ at birth, which is where the hip joint clicks in and out of the socket, but we had used double cloth nappies which splayed his hips out and this had corrected itself. Regardless we had another ultrasound to check for physical abnormalities that could be causing his inability to bear weight on his legs and these tests came back clear. We were off to Occupational Therapy.
Fortunately one of my oldest friends and his beautiful wife are occupational therapists and are brilliant. I phoned Dave and asked him for his opinion. He said to bring Jude in and they would have a look. They did some testing and found that Jude could not roll, could not crawl, could not weight bear in his legs, and was terrified of movement. He did not want to move or be moved about. He did not want to pull up to stand and was scared of things like swings where the body is in free movement. He was also incredibly anxious around new people and groups of people. Would not be held by anyone but me, and found situations that were unfamiliar and people other than our immediate family so overwhelming that he would have an emotional melt-down and could not cope. I was a mess. My beautiful baby boy was so upset and anxious all the time that I felt his life was a misery for him. I was worried he would not ever develop proper movement and may not walk. My husband was jokingly saying how cool wheelchair basketball is, but deep down inside I was terrified that he would be in a wheelchair.
Dave and Kathy offered to work with him and we haven’t looked back. The first step was getting him used to the feeling of movement to try to overcome some of his fears. This was coupled with a technique of brushing, which is kind of like baby massage, and helps to relax him and deal with some of his anxiety issues. I had to do the brushing every 90 minutes during waking hours and I found that by the end of the second day it was making a noticeable difference in his anxiety levels. He recovered more quickly from emotionally challenging things like trips to the grocery store, that before would have him screaming and unsettled for the rest of the day and that night. I started doing exercises with him to get him to roll, both from stomach to back and from back to stomach. First I had to encourage him to lie on the ground, then we worked on rolling over by placing toys and encouraging him to reach. There was a fair bit of crying because he did not like lying flat. My husband, my two older children and I would all cheer him on. Then one day he finally rolled and we all cheered and clapped. He banged his hands on the floor and said “Yay!” and was so proud of himself. I was beginning to feel better about things.
The next step was to encourage crawling. Crawling is an important step in development and we were keen to get him to at least be able to crawl, even if he didn’t choose to do so very often. At OT Dave and Kathy placed big cushions around the room that he couldn’t bum scoot over. The only way over the cushions was to crawl. Dave showed me how to get in behind him and hold his legs together to make him pull forward in a crawling motion. We spent about 2 months on this. First getting to pull up on all fours, then pulling forward with knees clamped, then being able to go over the cushions in a crawling action. I replicated it at home by pulling all the cushions off the furniture and creating a cushion room in my lounge room. It all paid off when at 15 months he could crawl and climb over cushions. He can now crawl if he chooses too. He doesn’t do it unless there’s no way to bum scoot over something, but at least he knows how.
Next we needed to get him pulling up to stand. At first he was terrified of the out of control feeling he had when only his feet were connected to the ground. He would stand and hold on so tightly that his knuckles would be white. He was really scared of it and would not move his feet or let go with his hands to reach for anything. He would panic and cry and look at me with such fear in his eyes that it was heartbreaking. It took a lot of work with toys on top of boxes and the lounge to encourage him to let go with his hands and grab something. Jude was also really scared of shifting his body weight from one foot to the other. He would not move along the furniture because he had to take one foot out in front and place it down, then shift his body weight to that foot, lift the back foot and so on. This involves a few seconds of letting go where body weight shifts from one foot to the other, and this was really scary to him.
The exercises we were given for this was to sit on a yoga ball together and get accustomed to the feeling of free movement. We went to the park and sat on the big swing together. I placed Jude flat on his back on the ground and shifted his body up and down so he could feel movement while being supported by the floor. It worked. About a month after pulling up to stand he started to cruise the furniture. This is where he was up to at 16.5 months when we walked into OT yesterday.
Dave got big squishy boxes and placed them together. He put toys on top and then shifted the toys from one box to the other to get Jude to cruise up and down the boxes. He gradually opened up a gap between the boxes to encourage him to reach across the gap. Jude raced across the gap to grab the toys. Finally Dave made the gap slightly bigger than Jude could reach, and then he did it. He reached, found himself out in the space between the boxes, and moved his feet. He stepped once, from one foot to the other, grabbed the next box and kept on going. For me, it was as monumental as the moon landing. He took a step. He can do it, he will do it. He will walk. Yes he will come to it later than most children, but thanks to the support of my wonderful friends who are amazingly brilliant therapists, Jude is closing the gap. The most amazing thing is that he is no longer afraid of movement. He climbs over the cushions, he ‘jumps’ by bouncing on his bottom, he spins in circles, he pulls up and cruises along things, climbs onto the furniture and off again and he enjoys every minute. He is also much less anxious. He will go to other people now. He will make eye contact with people not in our immediate family, and even talk and interact with them. He has weaned himself off the breast and is sleeping through the night. He is no longer on any reflux medication. He does still have reflux-style vomits and acidic burps from time to time but is not in pain all the time like he used to be. He is a different child. A happy child enjoying life.
As a post script Jude is now almost 18 months old. He has not taken a single step since that fateful day, and actually regressed a little after that day. Lots of his old fears came back and I have spent the last 6 weeks getting him comfortable with movement again. He is now at a point where he will stand up and let himself be ‘walked’ around only holding on to my hands. He will do this for about 30 second before he panics and sits down. I’m sure we will eventually get there, but progress will be slow. We will just keep on pushing through.
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