This is 13!!!

 

And just like that, he’s a teenager. Gabe turning 13 brings about an odd combination of feelings. He’s moved into the awkward phase of life, but still, an exciting one of discovery. I’m excited for this next chapter for him. I’m really proud of all that he’s accomplished. Not only the medical hurdles, but social pieces and finding his community. At the same time, I can’t help but think that we don’t have much time. Independence in certain tasks seems light years away, but at the same time, he’s come so far. I shouldn’t put a time point on anything though…we are all continuously learning and improving after all. It’s an odd feeling. I no longer grieve for that typical kid I thought I was expecting many years ago. I don’t grieve in any way because Gabe is pretty perfect to me and a wonderful fit for our family. What I do grieve over though is when others don’t see his ability, or when his stubbornness or shyness interferes in him showing it off. Because he’s so awesome and he has so much to share with this world, I want him and others to organically experience the amazing gifts he has. Here’s an update on my teenager:

 Gabe’s heart continues to be in pretty good shape. We go to cardiology once a year. He has minimal mitral valve leakage and a slight murmur, but nothing that’s a limiting or requiring medications.

We are watching Gabe’s hearing. He often gets fluid in his ears and that can make high-pitched sounds a little difficult to hear. We’re trying to have some Flonase help before we talk about tubes again. We go back in couple months to reevaluate. 

His airway continues to grow. He still has significant obstructive sleep apnea. He never drops his oxygen levels, but he does have very disrupted sleep without CPAP. He tolerates CPAP wonderfully and we are always trying to tweak settings and find the proper mask fit. Someone needs to paten a CPAP mask for flat nasal bridges.

Gabe is continuing to grow along his growth curve. He’s done really well since he had his feeding tube removed last year. He is eating well during our normal routines. We are trying to work on him serving food on his plate and eventually cutting his own food. Adult men with Down syndrome are usually around 5’ to 5’3”. Gabe is following that trajectory.

Gabe continues to have a little bit of nearsightedness and some shakiness to his eyes due to poor muscle tone throughout his body which is very classic to DS. He doesn’t like wearing his glasses more than a half hour at a time. We are working on it.

Gabe needs his thyroid checked again next month. His labs are kind of borderline. He’s antibody negative, but his TSH lab likes to teeter a bit.

Gabe continues to have some skin issues we are watching. He has a few psoriasis spots that pop up here and there on his scalp. He also has the dermatitis which can show up on his skin with any kind of irritation. He also has some alopecia on his scalp. We use different creams to help with it. Autoimmune issues like this are also pretty significant to DS.

Gabe’s speech has been an area focus. He’s been stuttering so much the past couple years. I always thought it was because he had so much he wanted to get out and had to motor plan it all to get his words out to express what he wanted to say. It’s become really significant and understanding his articulation is hard. We try to do different strategies, but he doesn’t really like to follow speech directions because he knows it’s hard for him. He’s also very quiet around peers so he doesn’t talk a ton because he knows it’s hard to be understood and communicate this way. He always excelled at verbal ability, but it’s become quite a struggle now. He'll start back up with speech therapy next week and hopefully he’ll be more receptive. It’s definitely an area he can get frustrated on, but he has to be willing to participate and put the work in to see the effect. We’ll keep at it.

We do a few physical therapy appointments a year with Gabe. He still needs foot orthotics. He pronates his ankles really badly. Again, poor tone and loosey-goosey ligaments. He often tires from being on his feet because he says they hurt. I’m hoping if we try a firmer plastic orthotic, it will offer more support. He still needs frequent breaks, but he does stay on his feet a bit more I think. It’s really just working on endurance at this point. I would love it if Gabe got involved in a team or Special Olympics. He just doesn’t like being put on the spot having all eyes on him though. He’s come along way with his anxiety, but he still is such a shy kid. All we can do is keep exposing him to extracurriculars.

Gabe has made some significant gains in occupational therapy. We’ve been working hard on chores. He will now put dishes away, make his bed, and put his laundry down the shoot. We’re trying to get him to get the hang of a spray bottle so he can wipe down counters. He’s helping me cook a little bit. We are trying to work on him getting ready for bed independently. He knows the steps, but doesn’t always want to do everything on his own. He still needs some restroom help. He will shampoo his hair, but only wants to use his fingertips. There’s something about getting his palms sudsy that doesn’t feel right to him. He will brush his teeth a little bit, but we have to finish him up to make it effective. We are doing lots of social stories and visits to the orthodontist to hopefully work up to braces.

Gabe had a successful year at school this year. I think adjustments in his schedule, along with having a better grasp on stressors and anxiety has really helped. He is social with others and really likes being there. He’s made great gains this year with reading some basic chapter books, doing some money math, hand writing, and addition and subtraction. He walks around the school like he owns the place and I can definitely see him growing up there.

Puberty has definitely begun. I have to say “hands up” to keep his hands out of his pants at least five times a day. It’s all wonderfully typical, but social appropriateness is not naturally understood to him. We’re really drilling in him what is a private space and what is not. Also, not everyone wants a hug. He needs to know boundaries of what is appropriate or not. When you give him hypothetical situations, he always answers correctly. However, he is definitely a hugger and has never met a stranger. It is a complicated concept though. We are continually working on demands and following instructions. He definitely likes to tell us “no” and push back. He doesn’t really flop anymore, but he definitely knows he’s bigger and stronger and can’t be forced to do things. You often have to wait him out. Proactively making lists of things that need to be done along with positive reinforcers and rewards help a lot. If he misbehaves, we can take things away or deduct screen time. It is getting a bit better, but still requires rewards for compliance that I was hoping would be able to be dropped by this point. His new thing is that when I ask him to do something he’ll say, “why don’t you do that!…oops…did I talk back? (Smiles)”. A lot of it is Down syndrome stubbornness, with a little bit of teenager and Lawrence genes mixed in. It’s enough to drive you nuts some days. When we ask him to do something and surprise us or question if he can, he generally gives us his best effort. For example, if we say “I wonder if Gabe can make his bed really well today….I’m not sure. I wonder if he does really good with that.” Gabe will then run upstairs and make his bed and then yell “surprise”. I think he likes having the control and showing off a bit. It’s pretty funny to see.

Parenting Gabe still requires a bit extra. It’s difficult, wonderful, typical, and exciting all at the same time. Our first born, our teenager….what a gift you are. Keep showing the world all that you are. I’ll make sure they listen and see you. Love you cash-man.