Tuesday, February 16, 2010

Jack, part two

Ok, well, let's get down to the nitty-gritty. It's very difficult to continue chronologically at this point. Instead, I'm just going to run through the different areas of development on the packet. I think this will be the quickest way to go.

Feeding and nutrition- Jack is an extremely picky eater, and always has been. So is Kain, but unlike Kain, Jack's specifically seems to be purely a sensory issue. You can usually talk him into at least trying something, but he will gag and choke on almost anything not already on the list of "Jack foods". He will eat peanut butter sandwiches, peanut butter tortillas, string cheese, milk, crackers, popcorn, bananas, apples, and grapes. This makes up the bulk of his diet. There are other things he will eat, junkier stuff, that we don't have every day like pizza, McDonald's chicken nuggets and fries, tater tots, cookies, ice cream, chocolate and a couple of other types of candy. No veggies. No meat to speak of. No juice, few fruits. He does take a multi-vitamin. He hates it and gags and carries on, but I bribe him to take it with a couple of marshmallows. The list is smaller than it used to be. He used to eat fish sticks, pasta, scrambled eggs, plain chicken, carrots,,,he won't anymore. He grazes all day and it is very difficult to get him to sit at a table with us and eat. I'm trying to work on this, but it's difficult. He can reach most of the food himself now and I'll often just find him sitting upstairs with a box of crackers. He can't use a spoon and fork very well at all, but as you see in the list above, there's not many things he will eat that require a spoon and fork either. We are interested in trying the casein/gluten free diet that is so recommended by some people, but as you can see it will be difficult...what he does it is pretty much all casein and gluten! But we will give it a shot.

Self care and sleep- Sensory issues play into a lot here. He will not stay dressed at home. He does in public at least (now...it was an occasional issue in the past :)). But at home, he is constantly stripping off his clothes. He says he's too hot, but I don't think that's it. Our house is old and drafty and cold right now, and he will have purply, goose-bumped legs and freezing hands and feet and still refuse to keep clothes on. He will not poop in the toilet. He does have bowel control, but he will only go in a diaper. Any measures we try to take to work on this have only resulted in him refusing to poop at all, so we have let it go for now. He also has a lot of difficulty falling asleep. I've talked about that here before. We've tried melatonin, but it seemed to cause nightwaking and nightmares. He can't dress himself, except that he can pull on underwear and pants (if they have an elastic waist...almost all of his do) if you lay them out on the floor for him.

Motor skills- His gross motor skills are great. He can (and does) climb everything, flip somersaults, pedal a bike with training wheels. His fine motor skills are atrocious. Just this past summer he finally started to scribble with a crayon or pencil. I have seen him make a couple of letters recently with a magnadoodle though. Those seem to be a lot easier for him to use. He won't do playdough, thread beads or do any of the fun Montessori-type things I've tried to set up for him. He is very interested in using scissors, but so far all we've managed is making snips in a strip of cardstock with great difficulty. He doesn't have a lot of the typical autism behaviors like toe-walking or spinning, or rocking compulsively, though he will occasionally spin, especially if he is nervous and in a new situation. He doesn't hit or scratch himself, but he will pull on his ears REALLY HARD sometimes when he is upset.

Speech, language, hearing- His vocabulary is quite good, and he speaks well...there are a couple of sounds he has difficulty with, but nothing out of line for a five year old really. His issues are more subtle than that. The biggie is that he uses "scripted speech". He can't communicate well, can't express himself well, so he will kind of borrow phrases from movies he's seen or from the people around him, or he'll use a phrase inappropriately. The actual favorite phrases of the moment change every so often. For example, one of his latest is to scream, "I don't need you anyway", which is a line from Brother Bear. Or to say, "I'm going to lose the Wii", even if whatever he is upset about has nothing to do with the Wii. He can't usually answer questions that require more than a yes or no answer, or if he does his answer probably won't make any sense. Although he can speak in complete, even complex, sentences, he will often go out of his way to avoid doing so. For example, he will bring you a jar of peanut butter from the kitchen instead of asking you for a sandwich.

Sensory skills- Lots of little oddities to list here. He is very rarely physically affectionate with anyone but me. It didn't always used to be this way, but just kind of developed. This has been very sad to me, to see him withdrawal from his grandparents and even his dad in this way. He often mouths things like his clothing, licks his hands, and seeks out certain kinds of stimulation...for example, he loves to shove his hands or feet underneath people. Kain used to do this too, oddly enough. He loves to swing, which is nothing unusual, except that he will do nothing else. If we go to the park, he will happily let you push him on the swing the entire time we are there and will have no interest in doing anything else. He has weird little language issues. There are certain phrases (no, oh no, uh-oh, maybe a couple of others) that make him very upset and he will go to great lengths to avoid them. For example, he and Tess are watching Caillou right now. There's a part of the episode where someone says "Oh no", and so when it gets close to that point, Jack will cover his ears and start saying "AHHHHHHH" so he can't hear it. He won't let you read books that have any of those things in it. He even cried at Christmas time if we sang "The First Noel". You know..."Nooooo-ellll, Noooo-ellll". It's ok. You can laugh. We did too. Gotta have a sense of humor about these things. This little weirdness is probably the one thing that has interfered most with public behavior. We were sitting at our homeschool co-op waiting for Kain and Maria's classes to be done, and one of the moms was reading a book to her toddler. It was a Carl book, which has very few words, so she was ad libbing, and she kept saying, "Oh no!", and Jack would scream. Sigh. His sensory issues and issues with being touched by strangers have made attempted trips to the dentist and barber a special kind of torture for us all.

Play skills/social development- Jack does play, and I would say he even plays imaginatively, but not very often and not with most toys. He will set up his trains or cars and you can tell he is pretending something. And all last summer he had a "building site" going in the backyard. He does tend to line up toys, and this was one of the early things we noticed. He would line up cars, bumper to bumper, all across the house, or blocks, etc....we thought he was just building roads. But they were disturbingly straight, and there was no pretend play involved in this, just lining up. Then we saw him doing it with other things...books, shoes. He will not play with play dishes, dolls, etc. which is surely not unusual for many boys, but he can't even do it with prompting, like if you say, "can you pretend to mix a cake" or "can you put this baby doll to bed", he will have no idea how to do that even though he knows what those things mean. Even if you show him and then hand it to him to try...he won't do it. He will not sing, dance, or do hand rhymes, never has, though he does like music. He won't imitate hand gestures at all. We can't even get him to try the Sign of the Cross. He just doesn't seem to get it. He will say the words, but he won't move his hand. He didn't have any imitative play, i.e., playing hide and seek or peek a boo, copying things he sees us do...this absence has become so obvious now that we have Tess that I wonder why we never noticed it before. Tess will imitate *everything*. She will follow me around the house while I clean, fold laundry, etc., and copy what I do all day long. Jack never did anything like this. As for playing with other children,,,he's not really interested. When he is with a group of children, you will see him play along side other kids well enough if he happens to want to play with the same thing they do, and he seems to enjoy the idea of "going to see friends", but he doesn't really play *with* them. He is always content to just go do his own thing. He doesn't even really try to engage us. He doesn't do things like bring us things that he's built or show us things he finds outside, that kind of stuff.

Last, but not least, behavior- he really is not a major behavior problem. He's a pretty quiet kid, and many people that haven't spent a lot of time around him are surprised we are having him evaluated because they know he is verbal and they don't get to see a lot of his little oddities. His issues are more subtle than what springs into most people's minds when they think of an autistic child. He does have tantrums, but I don't feel like they are manipulative in nature like Kain's are. He just kind of falls apart when things aren't going the way they are supposed to, and in this house, that happens a lot. He worries a lot. I wouldn't say he is anxious, but he kind of fusses and worries about certain things being just so, and he will ask you the same questions about something over and over again, like a rote script, and will get upset if you don't give the "correct" answer. For example, the first term he attended preschool classes at our homeschool co-op, he would need to prattle through the routine many, many, many times the day before..."we are going to have circle time and share time and snack and recess and craft time and sing the marching song and then you will pick me up and we will have lunch and...." over and over again, and if I didn't respond or got irritated and said, "Jack, that's enough, we've already talked about this" he would fall to pieces. He is usually pretty obedient, though you may have to request something several times to register on his radar, but he can also get very worked up about things and just kind of shut down and start screaming because people aren't responding in a way that will calm him, which mainly means dropping the conversation/arguing, holding and shushing him for a minute and bringing his emotions back down, and then starting over. Other types of behavior problems come from the fact that he is more physically mature than mentally mature. That is, he can get into a lot of trouble and has no judgement as to why he shouldn't do certain things. He is especially adept at messing around with our electronics and has seriously messed up our computer by figuring out our password somehow to access our desktop, go online and download a virus, delete files from our desktop, etc. He can get to any safe place I try to keep dvd's and cd's and drag them around the house. He will reset the alarm clocks. Stuff like that.

To finish up, I will say that there was never any big regression in acquired skills. He did lose the ability to make eye contact at some point. I don't know when exactly that happened...I can guess somewhere between 1-3 years of age. I know he did make eye contact as a baby, and at some point after he became an active toddler he was unable to do it anymore. I'm sad to say that we didn't notice this for quite some time. I think he just seemed busy and active, and it just didn't register. It was around 3 1/2 that I was starting to fear that something more was going on than just immaturities in certain areas. More about that in my wrap-up post tomorrow though. If you've actually read through all of this, God love you! Tomorrow will be much shorter! :)


entropy said...

Oh Mel! I hope you get some answers.

Erin said...

I will be praying that the evaluation goes smoothly and that you can find ideas of things that can help Jack. It is great that you are documenting all of this so you have it to refer to and recall things. So many more children have these types of sensory issues and other "oddities" nowadays, or they are just identified more often, one or the other. I see some of these behaviours in Caroline, to a lesser extent... and I can look back at my childhood and my brothers' childhoods, and I remember lots of sensory things, like tugging at the necks of shirts and chewing the sleeves, food texture issues... my youngest brother still won't eat hardly any fruits or veggies, and he is 21 yrs old now... he is the one who was diagnosed with Tourettes. Do you have any family history of any sensory issues and developmental delays? It is all so puzzling sometimes, but like anything in parenting, just challenges to work with... even with a specific diagnosis, I know he's still just your Jack to you and you love him to pieces, and hopefully you can get some guidance on ways to help him as he grows and goes through the school years with you.

Hugs to you!!

Mary @ tinyprayers said...

I will be praying and praying for you tomorrow. I will pray that Jack will do as well as any child can do in an evaluation, being in a strange place with strange adults asking him to do a bunch of stuff he doesn't normally do. I will also pray that the evaluators will respect you / treat you as the expert you are regarding your son. Finally I will pray that this evaluation will provide you with the means to get whatever treatment / therapy you deem necessary for Jack.

Mary @ tinyprayers said...

As for the gluten / casein free diet, so many of the children on the spectrum do have very restricted diets, and these diets usually consist of foods the gfcf diet doesn't allow. For the families that I know that have committed to the diet, the child usually resists for the first few days (some really tough children even held out for a couple of weeks), but the children eventually get hungry enough and start to eat different foods. Also, there are gluten free alternatives of many foods nowadays. You can find gluten free bread, and there is soy, rice and almond milk. There are also gluten free pretzels and chicken nuggets if you know where to find them (I don't, but I have fed them to my students when their parents sent them in). Of course, this stuff doesn't taste exactly the same, but if you don't deviate from the diet, eventually the child adjusts to it and doesn't realize what he is missing.

mysteryhistorymom said...

Mel- I wanted you to know that I am praying for you and your darling family and will continue to do so. I hope you get some answers to help you on your journey with sweet Jack. Being a parent is so hard! Please know that he is a precious child and that will never change. We all have struggles and things to work on. I tell my girls that almost every day.:) Big Hugs, dear friend... Lori

Lisa said...

Mel, I am keeping you and your family in my prayers! Please let us know when you are able how the evaluation goes. God bless!