Jordan’s not 5 years old yet, but he will be in May! How time flies! He’s quite the big boy now.
I don’t know where I left off with development updates, so I’ll just dive in here with the things Jordan has learned to do… the good and the bad! lol
Phew! I’m tired just writing that list! But, moving on:
Physical: Jordan wears size 4T clothes which means he is actually pretty big for an almost 5 year old with Down Syndrome, since people with Down Syndrome tend to be shorter. His proportions are different (he’s got the pudgiest, shortest little fingers, bless his little boy heart!) but he is a healthy weight. He continues to be healthy, with just the occasional cold or usual bug. He did have an ear infection this last month that I wasn’t aware of that ended up bursting his eardrum! Poor little guy. I knew he was super cranky and generally unhappy and unwilling to participate in anything… but one morning he woke up with some dried blood in his ear and much improved spirits. So, note to other parents of non-verbal kids, check ears if persistently angry. Summary: healthy growing boy
Gross Motor: Jordan walks up stairs holding my hand and the wall or handrail, he walks on even and uneven surfaces and he is learning to run. He does run, actually, but I’m not sure if it could be considered a real run or not. Whatever it is, it’s FAST. No turning your back on him outside any more. We are actually going to put up fencing at our house to keep him safer. Going to stores and kid-friendly places has been a lot more challenging these days, because he and Carolyn head in opposite directions and I just can’t keep them both safe. It was easier when I could keep them both contained. I do sometimes keep Jordan in the stroller, which is a good fit for him still…. but he is not necessarily happy to be there. I’m not sure if it’s mostly that he does not like new places or being restrained – different things at different times, I think.
Fine Motor: Though he still thinks fingers are generally far less useful than his thumb/palm maneuver that he prefers, Jordan is beginning to use his pointer finger for a few things. In fact, for about a week, he refused to sign “eat,” but would only point his index finger at his chin. It was weird to have to re-teach him to sign “eat” and he didn’t like it. Sometimes when I ask him to sign something, he will sign every sign he can remember except the one he can’t remember and that I’m asking for. So yes, he is beginning to use his pointer finger for pushing buttons, he is willing to work harder to push more difficult buttons too, though he is not ready for small buttons yet.
Occupational: He is doing good with eating. He eats thickened pureed foods, like Tomato Soup, Stufato (thanks, Lydia!), White Chili, Carrot Soup, Squash Soup, etc. with a little bit of baby food cereal to thicken it as needed. He feeds himself while at school, but I still feed him with a spoon at home. Partially, because it’s less messy and partially because it’s a good bonding and communication experience. I encourage him to look at me when he takes bites, I encourage him to sign “eat” whenever he is ready for his next bite, sit nicely (as hard as you might imagine for a little boy, much less one with anxiety issues about food – though he is very motivated to try so that he can eat!), and generally be an active participant. A little fine motor skill and fewer instances of throwing bowls and things would go a long way to me being prepared to transition him to feeding himself. He does also eat crackers and dry cereal, ice cream and the occasional cookies. We introduce other foods to him occasionally (too often and he becomes defensive of his mouth again) and we put challenging bits into his daily meals. (Breakfast is oatmeal, which is thicker and chunkier, rice or orzo are often added to the soups AFTER blending.)
Self Care: Jordan does NOT keep himself safe and is not aware of dangers. Hot stoves, electrical wires, roads, dropoffs, deep or running water, strangers and knives are all significant hazards to him. He does, however, go potty on the toilet every morning and every evening. He also pulls his shirt on (after I set it on his head with the hole in the right place) and pushes his arms in while I pull the shirt down. He pushes his feet into the leg holes of his pants and will sometimes reach down and give an obligatory tug on the pants to “help” me pull them up. He is perfectly content to let others do all his self care, so each little piece he helps with has been hard won at this point! He helps push his feet into his socks, orthotics and shoes, which is actually a big help. He can help with undressing at about the same level.
Communication: This and the next two points are huge ones for Jordan… because they are challenging for him and because they affect his level of happiness so much. One thing that makes communicating so difficult for Jordan is that he doesn’t try to mimic us. Since his primary way to learn is to repeat things with our help over and over… well, if he could watch what we do and mimic that, it would be a huge way to learn ALL THE TIME instead of just when we are doing things with him one on one. He is learning, though!
He will sign: Eat, Drink, All Done and More in particular circumstances with only a verbal prompt or maybe hand over hand a few times and then he does it all on his own when it’s time to sign it again. We reinforce these with the verbal word and he does seem to have expanded in his receptive understanding of words… but it is hard to tell what he understands. Directions he can understand are: “No-no,” “Put it down,” “Go out,” “Get Down,” “Stand up,” “Sit down,” “Time to eat,” “Go sit down,” and a host of “No” throw, hit, pull, take, etc. You can see most of the directions we give him are defensive… because most of the time we aren’t doing things one on one and he moves from one no-no to the next. It’s a lot of work and he doesn’t particularly like getting in trouble over and over. Although he recognizes certain things as no-nos, he has some kind of disconnect where he lacks impulse control (and something else) so does the same no-no over and over and over again. I suspect whatever it is contributes significantly to his lack of self safety.
Social: Jordan is really developing in his awareness of others. Well, that is, he is following Carolyn around and knocking her over and then climbing over her and taking her toys and they both fight over my lap. That is progress, I think! For those of you scratching your heads at my label of progress, consider that he is behaving almost identically to his little sister Carolyn… only she gets in less trouble for it, because she’s little.
I wanted to post a video of Dr. Who pushing the big threatening red button from The Christmas Invasion, but couldn’t find it. Carolyn and Jordan like pushing buttons. This was the best I could find… don’t bother watching the whole thing. ;-):
Emotional: Jordan’s emotional development continues. Though he lost a lot of emotional capacity in the orphanage, he is growing in his feelings of happy, content, sad, angry, frustrated, bored, etc. where before he was only happy or withdrawn. Overall, he spends more time in the unhappy camp than I would like. He is at his best with one on one time, though he does wear out and cannot tolerate very extended periods of good behavior! haha Good behavior usually means participating, not stimming and not melting down. Like today, we all went outside as a family for awhile and he had about ten minutes when he just ran around and stopped when we called. Then we had to bring him back closer to us to keep him from putting his hands in his mouth and from running off. At the end, he had to sit on a bale of peat moss (sitting like this is how he maintains self control the best) to prevent him from stimming, sucking his hands or melting down into crying and tears. After than we brought him inside and changed him out of his muddy clothes to play on his own in the play room. (We had a baby monitor with us) That’s what is success for Jordan outside right now. When I look at a picture book with him (he will sit with me to look at a picture book now) he works on looking at the pictures and pointing at them with my help. He’d prefer his eyes to not be looking at the book and to not point at pictures. His eyes are rather avoidant of books, actually… but we are progressing and got some great books that has one image per page and we look at that same book every time.
Stimming: Jordan still rocks and sucks his hands, but not to the degree he used to. He does not grind his teeth or slap his head any more. Sometimes he moves his fingers in his peripheral vision, but not much. He does like to slam his forehead against a window, especially if he’s feeling cantankerous. He is able to refrain from stimming from longer periods of time and participates with “the real world” more and more. He does chew the side of his thumb (either or both) and has large callouses there. He makes a hum/yell sound as he chews his thumb and it’s just a regular sound around the house. Honestly, I haven’t thought a whole lot about stimming lately.
Transitions: We’ve been finding that Jordan is in transition when we’re “out in the world.” He is no longer a baby who is unaware of things around him and able to “just be babysat.” He is more interactive and he is bigger and yes, he still struggles with anxiety. For example, going to the grocery with him can be hard, because he just barely fits in the little seat up front, but he wouldn’t stay with me if he were walking and I can’t push and hold his hand. Also, he doesn’t have the emotional endurance to stay cool while in a store for that long. He is usually quite close to his breaking point by the time we are finished, so I usually prefer take him on shorter trips but go without kids for the big grocery trips. Other people I meet would like to help, but if Mama can’t help this little guy, then friends and strangers probably won’t get very far. Sometimes I gratefully accept help pushing the cart to the car or other things, but mostly I try to avoid getting into situations where Jordan is melting down in public. It really is hard, because he does not accept comfort or hugs or snuggles or even toys or anything when he’s in meltdown. And I feel sad that I cannot help my son. And I feel judged because people judge me for not being able to help my son. And people want to help and though I want help, I don’t know what to ask.
Did I talk about Sunday School yet? He’s too big for the nursery now… we’re just trying to figure out how to transition from that, but we’re struggling to connect with the resources at our church… it’s a process, you know? One week at a time. Anyway, he has been knocking toddlers over and pulling hair (hard). So he needs something different. And so it’s hard to go to church. But we think we have some helpers lined up to help with him, but then we need to teach them what to do with Jordan! Err, this really isn’t a problem… that is, it’s a good problem to have. But anyway, this post is getting into too negative-aville… but transitions just kinda are that way. Transitions are a totally normal, but messy part of life.
Wrap-up: When Jordan got home, I became pregnant and had a difficult pregnancy. I just didn’t have enough to get through the days and give Jordan enough: emotionally or physically. Then Carolyn was born and she is 18 month old this month! She has been my most difficult baby hands down. Why? Because she doesn’t sleep. Why? If I knew, I would fix it! She’s also a challenging 18 month old right now. It would be less challenging if I wasn’t trying to sit on the floor with Jordan. Anyway, all that to say that I see the light at the end of the tunnel! Yes! Really!
On January 26th of this year, I made myself a goal of 10 uninterrupted minutes with Jordan each day. Some may judge me for it being such a small goal. Trust me, nobody judges me harder than me. But I have three other little kids, particularly a really possessive toddler who only takes one nap per day and that time is packed to the brim with “everything I need to do when Carolyn is napping, including the occasional nap for mommy. Beyond that, parents who are working through autism and developmental delays and attachment disorder and kids who are hard to engage understand what a big deal 10 uninterrupted minutes are. Close contact, one-on-one was not something I was succeeding with beyond daily nurturing through feeding, cleaning, dressing, etc.. So I set this goal. And I averaged 5/7 days successfully and I have not missed a day in two weeks! I had one week with just one day successful. That was a yucky week. It is VERY GOOD to have concrete goals to work towards improving both our bonding and communication and some skills together. My goal is 1 hour of one on one with Jordan every day. When you have four kids, a full hour of one on one is a big goal. But I think it’s both achievable (if I’m sleeping at night) and 100% worth the effort. In just the two months, I’m seeing an improvement in our relationship and an increase in some skill areas. And that’s just 10 minutes a day! (It’s getting warmer and dryer outside, which means we are having “bonus” play times a lot more often too… it’s less one on one, but it’s still great to be having fun and navigating challenges outside.)
By the way, by sleeping at night, I just mean I’m not up for multiple hours at night. I started last night in bed. Went down to the recliner after coughing for about 45 minutes. Went up to tuck Carolyn back into bed at midnight. Got up and brought Carolyn to bed with me at 5am. I consider that a good night. Good nights are about 50/50 this last month, but Brian and I have been sick, so I’m hopeful.
BTW – Jordan attends preschool 5 afternoons per week and that is currently a successful placement for him. The environment is challenging for him to learn in, but overall he is progressing there.
Puddles exponentially increase the amount of time Jordan is happy.
Big yard, no fences = bye-bye Jordan!
In and out: