I’ve been thinking about this post for quite awhile. What I would say, what I should say, what I want to say, and what I shouldn’t… lots of thinking. I have no problem showing full transparency about myself, but this doesn’t affect me nearly as much as it could affect Jude. So I found myself asking, ‘Would this hurt Jude?’ ‘Why do I want to share this?’ ‘Would Jude’s toddler friends be distanced from him because of what I shared?’ (More likely, will Jude suffer because misunderstanding mothers lack empathy and label him, keeping their kids away?) So please excuse some of the ambiguity.
You have probably been able to read between the lines in some of my posts and figured out that we’ve been worried about Jude over the last few months. Jude officially has a ‘speech and learning delay’. Any official diagnosis has to come from a neurologist, so for the next six months that’s what it is officially referred to for medical purposes.
We have had evaluations done through the community as well as evaluations done through our insurance provider – Kaiser, in hopes of gaining access to tools to better help Jude learn. Ryan and I have known for a long time now that Jude’s capacities and deficiencies fall largely within the autism spectrum. After we found out that Jude’s hearing was perfect, we both knew that the way Jude was learning was different and there wasn’t going to be a simple solution. Jude also fit nearly all the criteria for autism. One of the reasons this is hard to share is because people don’t understand autism, which is what we believe Jude has. The word ‘autism’ carries such heavy inferences – some loving, compassionate and empathetic people aren’t phased. Unfortunately not everyone is that abundant, and as a parent you worry that once you mention autism, others will never see your child the same – they will put him in a box of what they think that means. It isn’t fair to the child. You wonder if you’ll do more harm than good by mentioning anything at all.
I didn’t understand autism, and we have so much to learn. It looks different in every child. Just because a child may be on the spectrum doesn’t mean they are angry, or unable to learn, or completely out to lunch, or anti-social, which is what I thought it was. Children with autism are ever bit as precious as any other child. I probably got too much confidence from the fact that Jude played well with others. We had been expressing concerns about Jude since he was very young, however even our pediatricians would say, ‘But he’s so affectionate!’
I’m sure I will occasionally share things about autism, and our challenges in teaching Jude. This is our life now, but autism is just part of our life and one part of his.
This is a hard post to write because Jude is incredibly precious and I love him with every part of my soul and every piece of my heart. I would never want him to feel like I’m disappointed in the person he is. (So…. why write about this? If there is even a chance that this could hurt Jude. Why?) The answer is: because I’m not afraid of this, I’m not ashamed of it, and I never want Jude to be. This is a big part of our life right now. Jude will be starting next week: 6 hours of ABA therapy, along with his speech and OT therapy that he already had. We’ve also qualified through Kaiser to do group therapy. So it definitely is a lot for us right now. We have a rep from the community coming to do another in-home visit on Monday. I mention this because we’ve been going to several weekly appointments pretty much all year. For someone who isn’t the best at being organized it’s been quite the ride. Goal – get organized! Not quite there yet…
I know I can’t educate everyone or make people know and understand how kind Jude is. Jude from the minute he was born was an incredible adventure. It’s no mistake that he’s Cougar Jude. He adds so much to our family.
We really weren’t after a diagnosis of any kind, we know there is something unique, we don’t need someone to tell us that. What we’ve been after are tools. Tools that will best help Jude. That may sound strange, how is what Jude needs different than what Finn needed? Jude learns differently, so much of his learning has to be spelled out in a very slow, piece by piece way. It just doesn’t come naturally. Even something like attention span, just being able to hold eye contact can be hard. But, we can teach him. Jude will look at us, however when he doesn’t understand what we’re saying he will turn away. Since we’ve started talking largely in gestures and simple language his contact has been so much better!
I feel very encouraged because he is teachable. He can learn – he is just as ‘smart’ as other children, he just learns differently – the capacity is there. Jude just takes time. Lots of time, lots of patience. We’ve been working on puzzles this week a lot and I can’t believe how far he’s come in just one week. I have learned a lot, but I still have a long way to go. We’ve officially been on this journey now for almost two months, but we’ve been working on it in our own home for a long time. Jude knows a few signs which have helped, as has the change in his diet: going on a gluten, casein, and milk free diet has helped significantly in him just trying to communicate. He will actually shake his head no now, HUGE progress, instead of breaking down and just crying.
Some of you may be wondering, how do you know? How do you know it’s more than a speech delay?
It’s a little painful to write about and feel like you’re publicly putting out everything that Jude can’t do, he does do so much well too. Some of his skills are as low as a 3-6 month old, while other things are close to his age level. There are things we just can’t deny. Jude’s isn’t as sensitive to pain – somersaulting down the slides and head bonking into Finn- Jude comes out unphased. Finn has learned to not always try what Jude does because it can hurt! Jude has a fearless attitude – swimming under the dock at Grandma’s house, sometimes a lack of stranger recognition. He sometimes struggles with fine motor skills, and doesn’t have the best attention span. He gets possessive of items, and he does have some some rigid play, especially with cars and trains. But we can teach him. Even the way he looks at a toy, he can get stuck on some of the details. There are many, many things. We are in a better place now than we were two months ago and I am generally optimistic. It’s slow and steady, but at his age if Jude just gives us an inch we can take a mile.
Jude said his first real word on Sunday, which is great news. He said, ‘baby’. He enunciated it perfectly! With his attention span getting better he’s been able to watch our mouths and figure out how to sound things out. He’s been able to say ‘ugh oh,’ ‘ba’ ‘ba,’ and ‘go.’ Jude has always been a babbler, but to intentionally be able to control the sounds he makes is a lot of progress. Ryan and I have already grown a lot closer through this. When this was all first coming out at night I felt like we would just hold each other together. I haven’t ever experienced anything like that. We really held each other together for a few days, incredible how much more optimistic I am. Optimistic, but our only expectation is that we enable Jude to thrive, and make sure he always feels loved, despite the frustrating moments. There’s just so much literature out there, and the autism spectrum is so broad and misunderstood – it can be scary.
Labels don’t generally help people – we all have lots of quirks. But where labels can help other people be more understanding, and especially get the tools Jude needs to thrive, we really have nothing to be scared of in talking about autism.