Casaubon's Book

Growing in So Many Ways

We came back from the developmental pediatrician yesterday in a jubilant mood. Two of my sons came to us with significant developmental delays. Both of them have made wonderful progress, so last night was an occasion for celebration.

A lot of parents have children who are delayed in some ways. Some kids catch up. Some catch up part of the way. Some never do. It can be a huge struggle to trust that you are doing things “right.” After almost 16 years of parenting kids with significant disabilities, I’ve come to feel that as long as you are in there working to support your kids and get them what they need, there may not be a “right” – sometimes the answer is to take hands and pressure off and let things go. Sometimes the answer is to be as intensive as possible. Often it floats somewhere in the middle, reflecting the fact that kids need time and space and freedom to grow – and also need help and support. I always joke that even though my family is huge, it does not constitute a meaningful statistical sample – which is still true. But I do feel like perhaps I’ve now had enough kids to be able to say not so much “this is what works” but “this is what I feel I can trust” in all of this.

Developmental delays are measured in a couple of ways, roughly both as “months or years of delay” and “percentage delay.” So, for an example, a 2 year old who functions as a one year old is both 1 year delayed, and also massively delayed percentage wise – a ten year old who keeps the same percentiles will operate as a five year old. The reason for both those figures is that left to themselves, most kids without complicating disabilities will do about a year’s worth of development in about a year. Some might do more, some a bit less, but it averages out that way. But not always.

A child with severe disabilities or in a very difficult environment might only be able to do six months worth of development in a year – so in two years the child will be a full year behind functionally. If the cause is mostly environmental, or something that can be taught or remediated (a child with a hearing limitation is given a hearing aid, a child that didn’t quite pick up something intuitively is given one-to-one input to help them learn…), often the child can make a normal or sometimes even more than normal amount of progress. If the child has a profound or difficult to remediate condition, one year or less may still be the norm. If you can get a year’s progress done with a child, eventually the percentage delay will begin to decrease – the child who was doing 50% of what her peers were doing when she was two may not close the gap – but a 10 year old with a year’s delay is in pretty good shape for the most part.

I have four children with learning, cognitive or developmental disabilities. It has been a fascinating exercise watching them change and develop, and to try and sort out what was going on, and what they need. My oldest son, Eli, is by far the most severely disabled of my children. He has a 200 word vocabulary, mostly doesn’t speak in sentences, isn’t fully toilet trained and has severe autism. He’s also extremely bright by some measures, but for him, getting through the barrier of his autism to help him function more like other people is simply tremendously challenging. Eli’s progress is measured in months annually, and while at 3 he was an odd child, but one that could sometimes compare with his peers in some respects, at 16 the differences are huge. These do not much trouble us – we love Eli as he is. But for a long time I worried that I was partly responsible for his level of delay, that we didn’t provide enough support and enrichment – guilt is a big part of parenting after all, and the news loves stories of parents of autistic children who devote every waking second to “fixing” their children and succeed. That there are huge problems with that narrative of “fixing” doesn’t change the fact that guilt is free and widely available.

In some ways Eli has made tremendous progress over the years – his social skills, his behavior is public is excellent. Eli goes everywhere with us, all the time. We don’t worry that Eli will be the kid that takes us away – he’s comfortable in a theater or a crowded farmer’s market, on our farm or at our synagogue. We do worry he’ll slip away from us occasionally, but we have always found him again, and he’s good company. He’s also made academic progress, and reads independently. But in other ways, not so much. One good thing about having multiple kids with disabilities is that I stopped beating myself up and accepted that living in our house allows kids to grow and develop well, and that the limits are not my fault.

One of my biggest jobs as a parent is to figure out what’s going on with all my kids – biological, foster, adopted, and figure out what is needed, and then chase it down and get it. This is one of the most fascinating and frustrating sometimes parts of parenting. It is one where I can feel totally inadequate, or truly proud of myself. And it can be a big deal – one of my children came to my home because prior foster parents were unable to meet his complicated needs despite their extremely good intentions. Doing this, I’m going to make mistakes – but I also know my kids will pay if I don’t do it well and carefully.

I have had a number of foster children who came to us with delays, but I’ve had the deepest opportunity to observe the ones who stayed. Of the sibling group of five I came with, four came with significant delays and learning issues. Rimonah, on arrival at 3 1/2 was delayed by 18 months, functioning like a 2 year old. She had little language, frequent, violent tantrums, and few of the skills you’d expect in a child her age. She was small for her age, had health problems and struggled to pay attention. However, we realized pretty quickly her delays were mostly due to trauma and environment. Good food, a environment where she heard a lot of language, safety and therapy allowed her to zoom ahead very quickly. At her first appointment with the developmental pediatrician, it was clear that she had the ability to catch up. By the second one, a couple of months short of the one-year mark on her placement with us, she had caught up entirely, and was a normal 4 year old who needed no special education services. She grew three sizes in a year and went from being small for her age to being on the tallest children in her kindergarten class.

It is hard to sort out what does that. Fear and anxiety are tremendous barriers to learning – a kid who is afraid all the time is not taking in information. Poor nutrition delays both physical growth (including brain growth) and also cognitive ability. In families with little education and a ton of stress, people may not speak that much – which leaves kids not hearing enough words for them to develop language normally. Families living in tiny motel rooms or small apartments with no safe outdoor space may simply not move around enough to help a kid develop enough physically, and a child trapped in a small space without normal access to movement may struggle with tasks that involve attention. Sometimes the tests are biased – they assume children have experience of things they may not have experience of. A child of 3 who has never seen blocks or never held a crayon will do less well on a test that includes drawing and building than one that has prior experience.

Watching developmental pediatricians evaluate many children over the years, I’ve seen evidence of bias in their evaluations too – because nothing is perfect. For example, both my twins answered a question incorrectly and then corrected – but because the developmental pediatrician thought that Rimonah was doing well and Judah less well, she gave partial credit to Rimonah because she corrected herself – but not to her twin. A doctor looking for ADHD or behavioral issues may find them. I’ve also seen a difference in how doctors listen to me, a knowledgeable parent who “knows the lingo” and to parents who don’t have as much familiarity. Nothing is perfect. Some of my kids over the years have been diagnosed with things they simply didn’t have – perhaps because the problems they did have seemed intractable – it was easier to diagnose and throw them into a special needs classroom than give them safe housing and better nutrition, unfortunately. One of my children had been diagnosed with “severe developmental delay” because someone had screwed up his birthdate – in fact, he was on target for his actual age. Other kids came with ADHD diagnoses that were probably more about never leaving their house – or with obvious major problems that had gone undiagnosed for years.

I’ve made mistakes too – while I trust my own judgement now about what kids need, I haven’t always grasped what’s going on, and good professional evaluation is an important part. For example, when Deniece first came to us she often forgot obvious things. I knew that trauma can affect memory, so assumed that would get better. When it didn’t, we finally pushed for more evaluations and realized that she had issues with short term memory that are separate from stress and trauma, and that could have been addressed much sooner. The foster parent really has to learn a lot about a lot of things – medical, educational and other issues in order to be able to sort things out. Sometimes I can’t give a kid what they need – I think Deniece would have made more progress her first year with us if we’d been able to homeschool her and take her away from some of the pressure of new schools, homework, etc… all of which were a lot for her. But homeschooling foster kids is not permissable here, so you do what you can with what you have.

Rimonah’s twin, Judah, came to us more delayed. He functioned as an 18 month old at 3 1/2, which is a tremendous and very severe developmental delay. He barely spoke, put only two words together for the most part, could barely walk and had behaved like a toddler. He was also tiny, weighing only 23lbs. His head was tiny. He was much smaller than his twin, and looked at least a year younger. He still napped twice a day at 3 1/2, like a baby. He drooled and choked on food, indicating feeding issues that hadn’t been addressed. In his case there were complicating learning factors and other difficulties. But what we’ve seen is even with those issues, with lots of inputs and support at home and school, Judah is catching up – and more quickly than anyone expected. His path wasn’t as straightforward as his twin’s. But a little less than 3 years later, at the developmental pediatrician, he’s now functioning as a 5 1/2 year old – at 6 years, 2months. For the first time his delay is less than a year. We are talking about reducing the supports for him at school, and while we anticipate he will need support over the years, he can do more for himself each year. He’s finally catching up in growth to his twin as well, and looks like a normal six year old, although he’s still a little on the small side. Among other things, Judah needed more time to feel safe and secure, and more time to catch up. But he is catching up. He’s managed to make a year or more progress every year and close the gap a little.

Judah will probably always have cognitive and learning issues, but knowing that he doesn’t have the ability to intuitively fill those gaps himself makes it easier for us to know to work harder with him, and where he needs help. Things other kids pick up without being taught require teaching for Judah – but once he has something down, he’s so proud to be able to do it. And in some ways, Judah is more advanced than my other kids – he is truly the most self-less little person I’ve ever raised, always happy and proud for other people. He may not grasp always why people do what they do – but he does grasp that he should be happy and friendly and warm to them instinctively.

My oldest foster daughter, Deniece, did not have developmental delays, but did have undiagnosed learning delays. That, combined with having missed a great deal of school and a great deal of stress meant that she was more than 3 years behind her peers academically. That first year she was with us, she nearly failed 5th grade, and everyone worried that she didn’t seem to be making progress. It took most of that year to get her the learning supports she needed. But we also had faith that that year was also a time in which a lot of less-visible things were happening for her. She too had been tiny – wearing a girl’s size 6 at almost-11. She gained 20lbs and grew 5 inches that year. She was adjusting to a family radically different from her experience, and filling in a host of gaps that until then, she’d not even known were there. For us, all the kids were like vases with holes in the bottom – until you plugged the holes, the water level couldn’t rise and let the flowers bloom. We worried we weren’t doing enough to support her academically, but decided to trust that the holes were filling – and lo, the following year Deniece was on grade level and made honor roll 3 quarters out of 4. I can’t explain to you why I was sure she would – just that I was – this is one time when I trusted my gut, and somehow, it all came together. Sometimes thats what kids need – time and trust that they can make it.

Our youngest child, Hezekiah, came to us after several years in another home at 2, with moderate developmental delays and severe hearing, speech and language delays. Despite the diagnosis of congitive disabilities, I was pretty sure he didn’t have them. This is another gut thing – I have watched my really cognitively disabled kids struggle to learn. Kai learned rapidly, and while he lacked language, he was super quick with anything mechanical. And gloriously, I think we’re right. A child who at 2 years and 3 months spoke at the level of a 10 month old (no words, just sounds) now speaks at the level of a 27 month old (he’s 34 months) – 17 months of developmental progress in language in 8 months, despite a hearing disability. A child who functioned at the level of a 16 month old at 27 months, now is cognitively stable at 34 months – at 38 months!

Kai was failure to thrive over and over as a baby – he had massive feeding issues and was tiny. His body and brain simply weren’t getting enough nutrition to grow. At 2 years 3 months he weighed barely 20lbs. Sorting out what was sensory and what was stress was challenging, but he now weighs almost 26 lbs, eight months later. He’s still short for his age, but I no longer worry if Kai doesn’t eat a meal – he’ll do ok, he’s growing and thriving. The growth of his body is so deeply tied to the growth of his mind at this stage that in some ways we concentrate on that – making sure he’s healthy, eating a diverse diet and getting bigger is the centerpiece of what we offer him, along with meeting his specialized needs for learning and hearing support – and also helping him feel secure and safe since his entire life was upended not so long ago to move to us.

There’s no magic fairy dust to this. We talk to our kids all the time. We play with them. We look for gaps and try and fill them. We try and keep them safe and help them feel secure and loved. We feed them good food and plenty of it, and don’t make it too big a deal. We play outside. We find what they are good at and praise them for their strengths. We advocate for them – my kids get regular supports in school, speech, PT and OT if they need it, and early intervention in the home or at a small, loving preschool that is half kids with disabilities, half kids without. And remember, Eli, my biological son never had a dose of fairy dust – that is, it isn’t that we have magic powers – we really don’t.

Instead, what I have now after all these years is a sense of what we CAN do, and what the child has to be able to do in order to make progress. All of our kids can grow and do well – if differently. Some of their delays and disabilities will be permanent complications. Some need time. Some need specific supports. Sometimes what it takes is really not what you expect – sometimes what a kid needs is to succeed somewhere. I think Deniece turned the corner when she found herself a star in theater camp, able to draw the eye and excite the audience. For the first time she really felt like she had something unique to offer other people, and the faith in herself that engendered may have been the most important change. Sometimes what I think will be a disaster for a child is fabulous – or vice versa. I was worried about how Judah would do with the structure and expectations of kindergarten – but he’s thriving there.

As I said, there is no magic in this – but there is a lot of hard work, especially for the child. It is his or her accomplishment in the end, not the parents’. If I had to advise other parents dealing with delays it would be to say this. Get them what they need. Fight for that. And then give them time and trust and wait and see, and then try some more. And remember, you don’t have to fix your kid. That isn’t your job. You just have to look at them and see where they’ve been and where they are going and be proud of wherever that is.