Man, it is good this boy is cute. He is in constant demolition mode wherever he goes. His little hands are into EVERYTHING. I'm excited that he is exploring and testing boundaries; there are worse things than messes. But...I'm tired! The newest fun thing is walking to the kitchen island (which he is now as tall as!!!!) and swiping off anything within reach. This was first tried with a full (luckily cold) coffee cup -and, being the queen of clutter, I struggle to stop repeating my mistakes.
We are working HARD on redirection and following commands. We are also working on not raising our voices when we are frustrated. While Parker is understanding more and more, it is difficult to tell when he understands you and is ignoring you, or if he really isn't processing what you are saying. We are also struggling with discipline when we know he is ignoring. Developmentally, time-outs are our best option, but he doesn't understand them well. He is so easy-going that he often doesn't mind time-outs. So, most of the time, we re-direct.
Luckily, he is a repetitive kid and sticks with the same few naughty behaviors...currently, pressing buttons on the entertainment system gadgets, throwing insert-object-here (phone, remote, food, etc.), and some others. He is manipulative at times, for sure. I see our future filled with 1) Cute smiles, giggles, and hugs to get out of trouble and 2) Mock innocence/fake misunderstanding. We are just stepping into the smiles now! Admittedly, there are times when it is hard not to laugh...like when he figured out how to make the ice-maker on the refrigerator work and stood in euphoric shock when they first came tumbling. It is a work in progress!
Okay...got a bit long-winded, there. P just has so many favorites! He also has a lot of goals :) We are working hard on speech, which still includes a lot of signs. We are realizing quickly that Parker's needs are growing more sophisticated than his ability to communicate them. We are hoping this helps boost some speech progress. One major LOVE of his right now is the new heated blanket we bought. If he saw me on the couch with it, he would sign "more"-- but it took me a few minutes to figure out that "more" meant blanket. So we've worked with him at least on changing his sign to "help," and hope to work on "blanket." Our issue at the moment is that many signs are similar, so we are working on distinguishing between objects and needs. We've found that there are some things that Parker will not try and speak because the sign is so efficient for him, like "more" or "eat." Currently, "All done" is the only sign that he will also speak. We are making progress, though!
One of our biggest milestones in the last few weeks has been Parker's transition into his "big boy bed." This has taken us a good 8-10 months to accomplish, so we are pretty excited. We started late last summer, like many parents--- Parker figured out how to climb out of his crib, and we panicked. We made assumptions about how well he would do with this transition because he is able to successfully sleep on a cot at daycare during nap time. We took the side off his crib, added a toddler rail, and thought all would be perfect. We were wrong. The lack of peer pressure at home, our inability to sit with him for two hours until he fell asleep, and the temptation to get up and play did us in. So, after a week or so, in a move of total exhaustion, we turned his crib around so the tall side faced out, and brainstormed what to do next. We couldn't come up with anything great-- I even researched special needs beds. They are fantastic, but often custom made and nearly a thousand dollars. I just didn't feel like we were at that point yet. I researched mesh covers, tent beds, cots, etc. At the end of winter break, we decided to try again. This time, we got a little smarter and re-connected our baby video monitor, and strengthened our bed time routine. When Parker tried to get out of bed, we gently scolded him through the monitor. We are about a week and a half to two weeks into big boy sleeping! He still gets out of his bed in the morning and plays, which is hysterical to listen to, but we'll choose our battles wisely. See the video below.....last week, I woke up to Parker hysterically giggling just before my alarm went off. In the pitch black, he was counting, throwing something across his room, giggling, running after it, and starting over again. Love. That. Boy.
As I mentioned before, we are learning about Parker and what helps him focus. At home, there aren't a huge amount of things that Parker really needs to sit down, sit still, and focus on. School and therapies are not like that. So, we brainstorm methods for helping him sit still. He loves music, rhythmic stories, bouncing, swinging, etc. We are experimenting with wrapping him in Lycra to see if it helps him settle. We are avoiding buying and installing a swing in the house for now...but I suspect that will be in our future. The child just needs to move. In OT, they tell us that it is because of his low muscle tone-- his body doesn't feel safe or comfortable in space, and movement helps bring him awareness. But the tough fact of life is that sometimes, we just have to sit still, so we are working towards that. He is a tough little man.
I can't believe we are already in 2016. In my head, I keep saying (incredulously) that this is the year Parker turns four. For whatever reason, that starts to signify the exit from baby/toddler land and the entrance into big-boy-ville. Parker has grown a bunch in the last 6 months. His head reaches the island in our kitchen, and his baby belly is no more. His hair(s) grows like weed(s)-- we are down to less than 5 weeks between haircuts before the mullet arrives. He is ACTIVE to say the least, and so lovable. We are always in a position to learn about him and from him. His smile and laugh are contagious, even after he destroys a room, grabs a handful of my dinner and throws it across the table, or growl-yells in a restaurant. There are times where I have to bite the inside of my cheek to keep from laughing at his earnest face when he is being "bad" -- or really, just exploring his boundaries. I'm not inherently good at forcing him to do things for himself. My gut reaction is to baby him and love on him, so it is a test for me to demand his best (and take the time when it is slow).
Parker is still our mellow little guy, but our definition of mellow with him has changed. Mellow now should really read content. He is happy most hours of most days. However, when he was a baby, mellow used to mean calm. Parker is no longer calm :) He defines the word busy and very nearly bounces off the walls (more to come on this later). He keeps us on our toes! With that, here are his current favorites and goals:
Foods: Parker is picky like his mommy. He finally likes chicken, as long as it has ketchup or bbq sauce. He LOVES oatmeal, yogurt, broccoli, Mexican rice, and most sweet treats, which he very rarely gets. Recently, he started to tolerate eggs, which is new for us. He does NOT like anything cold, cheese, drinking out of cups, or feeding himself without throwing utensils.
Activities: Before we realized what was happening, Parker became completely addicted to the iPad. I think because it is bright and can be held close up, it is something that he can see well. We try very hard to only play educational or musical shows. Quite honestly, it is the only reason we can get anything done without it being undone. We try and sometimes fail at not taking advantage of it. It is one of our guilty parenting moments, but...mental sanity.
Parker got some amazing(ly generous) Christmas/Hanukkah gifts that he adores. He has a piano and a puppy-guitar that he loves....because music is his absolute favorite. When trying to sleep, snuggle, calm, or captivate, music is our go-to.
Parker also likes to MOVE. He loves being chased around the house, especially when Chase is following him. He loves to dance and often throws his own dance parties (with or without music) with his shadow or in front of the mirrors at speech/OT. He LOVES aqua therapy. In fact, he is at the point where we are keeping him from trying to go under water!
So, I have a long commute every day (as does Matt). Some days, it is more about just making the drive so I can start my day. Some days, it is about introspection and mentally preparing for the day or week that comes. Other days, it is about observing my surroundings. Sometimes, as one would expect, I see the same cars repeatedly. The other day, I noticed all of the cars that were driving around me that had "My child is an honor roll student at x school." At first, I just thought about how much I begged my parents to put that stupid sticker on their cars when I received it. It was a big deal to me to be on the honor roll, even through college. But my next thought was kind of a punch in the gut. Parker will never get one of those stickers. I know most people come at a thought like that with the "oh, think positively, you never know what he will be able to achieve!" comments, and I appreciate their sentiment. They are right, I don't know what my little man will achieve. But I am also being realistic. Parker shows over a 50% delay in comparison to his peers. That is unlikely to change to the degree of him making his school's honor roll. Will he care about this? NO. It is just an example, which we will keep running into, of where our expectations for our baby have changed. And that is okay. That being said, I'd love to see a strong movement, like the #ChooseKind movement, take over where kids are equally recognized for their achievements as PEOPLE. Like being kind and generous to others. Or for being "Green" and environmentally conscious. Or being active in the community. There are so many more things to recognize our children for. I hope that when Parker is at the point in his life where students are working towards academic achievement with purpose, that there are other things that are highlighted just as much. Because let's be honest... the "Yay, you participated!" awards don't quite cut it. Let's show kids that we pay attention to more than their grades.
We are SO proud of our boy. In a classroom of his age-level peers, Parker is flourishing. His current word count is 9 (ready, go, two, three, Chase, all done, up, and walk). We are noticing that, of course, repetition helps, but that he is most attracted to phrases where we use inflection or lots of energy. We are still working on comprehension. For example, in speech therapy, we are working on saying (and doing) walk....walk....walk....walk....STOP! To try and help Parker learn commands. He will walk and say the word walk, he will attempt to say stop occasionally, but is still struggling to transfer the word stop to other situations. I anticipate language comprehension to be a main topic of conversation as we move towards his special education evaluation and subsequent IEP meeting next month. Language comprehension is also probably the hardest thing for people that don't know him to learn about him quickly. Even new therapists, who are around kids all the time, sometimes have a hard time realizing that he doesn't understand their command. This is definitely what we struggle with the most at home, too. Parker has the (almost) size, strength, and behavior of the average 3 year old. He is not interested in rules, flies in the face of danger, and climbs/throws anything. The following directions and learning from mistakes is what challenges us. Many people assume he is ignoring instructions, which aside from some minor exceptions, is really not happening. But, we take it one day at time. We are introducing time-outs at home to try and find some way to communicate trouble for repeated offenses-- current favorites are pressing the power button on the cable box, pulling the air vent out of the floor and putting things down it, climbing behind the couches, throwing/dumping food, etc etc etc. As we speak, he is upstairs jumping up and down in bed, giggling and babbling to himself. He is strong-willed, and HAPPY. I know moms get really frustrated about that assumption with Down Syndrome. Kids with DS are definitely not all always happy. We just happen to be blessed with a son who is. We are lucky. Even though my house is a wreck :)
We've been having the very real, nagging internal dialogue for a while now --which we were just starting to verbalize to one another out loud....the scary (to us) kind....the "what if he never speaks" kind. We can look around, and see that Parker's peers, with and without Down Syndrome, are all speaking in some way. We try our best not to compare, but at some point, other kids become a baseline for what you need to focus on, and I think that is okay.
We've really been struggling with comprehension and speaking for a while now. It is our most major stressor on this journey, if I'm really honest with myself. To us, beyond the physical needs (eating, hearing, vision, etc.), speaking and reading are the keys to independence for Parker. It took us over a year to teach Parker the sign for "more." We quickly learned that if we don't intensely repeat signs, he stops using them. Thankfully, the last 8 months or so, Parker's sign language has been increasing in frequency and he is now mastering signs in about a week, again as long as they are practiced often.
Our next step was Parker initiating the signs, instead just responding to our prompts. I was over the moon when Parker first asked to "eat" without me asking him. This is important for so many reasons, but one of the most prominent is that Parker is learning to show his opinion, which he doesn't always do. We are also working on two-sign combinations- like "more please" or "more cracker." We are learning the merits of the reward system very quickly with this. Sign language has been life saving for us, and Parker is getting the message that communicating is important (or in toddler terms, it gets you what you want).
In the last few weeks, in his new (thriving) school environment, Parker has started mimicking other kids and adults, and exploring sounds. Matt and I are always asking him if he is "ready to go," or saying "let's go," as part of our transition routines. This lead to him repeating the word "go" one day last...which was astonishing to hear in his little voice, clear as day. Over the last week or so, he started to be more purposeful-- though he is still mainly doing it when prompted.
It is no secret that Parker loves his doggy, Chase-- which is why, naturally, his next word was his version of Chase. Seeing him standing in the crib in the morning, pointing to the dog, and saying "Chase!" is heart-warming.
Then, this week, we started saying "Ready Go!" during speech before going down the slide or swinging at the clinic. Success! I literally cried on my way home from his session, and sent the video of Parker talking to our families.
We are SO proud of this boy and everything he teaches us.
This is a long rant...be warned! Ridiculously enough, childcare is still a crazy battle for us. As Parker's behavior gets more and more challenging, our childcare options for him dwindle before our eyes. Today's meeting was one that left us feeling defeated, defensive, and highly emotional. We were essentially given an ultimatum...provide a full time aide for Parker in his next room, or leave the school. Since there is no funding support for children with special needs under the age of three, no guaranteed one-on-one support once they turn three, AND the daycare is unwilling to take on even part of those costs, the path is pretty clear for us. My immediate concern is finding him childcare in the fall. We have a visit set up with at least one other child care center, and beyond that, will be seeking in-home daycare or a nanny. I recognize that as the student to teacher ratio gets higher over time, presenting significant challenges for a typical classroom. That being said, I believe that being in an environment with his age-group peers is the best option for him. I also believe that a daycare setting has the resources and structure in place to provide more purposeful learning opportunities for him. Ultimately, though, daycares are not set up nor are they willing to be set up to accommodate Parker's needs. We were told today that there are other kids with Down Syndrome that have made it through the daycare program at our school but that Parker has more needs than they can handle. We were told today that the teacher in his room spends hours a day just with him and that she feels so bad that the other kids aren't getting the attention they deserve. Ouch. I love my son, and I fully recognize that my love for him blinds me in some situations. This is not one of them. This is a situation where people are making a conscious choice not to take the extra step (or even a part of a step) to help him. It might be wrapped up in a nice, pretty, educational package, but the reality is that it comes down to $$$$. I don't even know that this issue is specific to Parker's school. Other schools get around this kind of an ultimatum by holding kids back a room, or letting things slip within the room. I do give this school a sliver of credit for sticking to what they believe is the most educationally beneficial, despite the fact that the educational benefit and monetary benefit happen to swing towards the school and not Parker. My long term concern is and apparently will always be.....When is it Parker's turn? Educational institutions are charged with the task of progressing EVERY child/ALL children. I understand that this translates to....schools will spend their money on the things that impact the most children at one time. They can't or won't afford to dedicate a disproportionate amount of resources to one child or a small piece of their population. BUT WHEN IS IT PARKER'S TURN? When is it his turn to benefit? When will someone other than Matt and I and our families do something that is individual to him and his needs? When will it be time for people to ask what is in his best interest, and then literally do every single thing that it would take to get there? That is my fundamental, heart-wrenching question to the world. I know that in the grand scheme of his life, this will all work out. I know Parker will be educated, and that people will work hard for him. But sometimes these roadblocks just suck. They are crushing and exhausting, and my Mama Bear comes out and is just tired. Whew. Let's hope and pray that we find truly the best child care setting for Parker.
