not so small victories

One of the things we have learned to appreciate over the course of this journey are the not so small victories. We get so excited about the smallest accomplishments which aren’t really all that small.

Jake is talking more and more each day. Last night he was sitting on the couch playing with his cars and he looks at me and excitedly says “the blue car is between the red and orange car! And Mommy, the red car is under the red blankie”. He was so proud of himself, as he should be! You see, we’ve been working on spacial concepts for as long as I can remember. This is HUGE!  I wished I had his both of his speech therapists numbers because I would be calling both of them shouting I think he’s got it!!!

We have a cabinet under our TV it is where we keep photo books and some of Jake’s toys. The other day Jake was playing with the doors opening and closing them, something he knows he isn’t supposed to do. Anyway, I tell him to leave the doors alone. He looks at me and says “Oh, okay mommy. This is your cabinet (pointing to the door that holds the photo books) and this is my cabinet (pointing to the door that holds his toys).” The fact that he can verbalize this is cool, and the fact that he used proper pronouns is really really neat (another thing we’ve been working on) but it is the clarity in which he says cabinet that is so cool, it was clear and distinct. Wishing again I could call his speech therapists Ms. M and Ms. K — they are probably glad they never gave me their personal cell phones – ha!

Another thing we’ve been working hard on are Jake’s self-help skills. One in particular is dressing himself. He lacks some of the motor skills that allow him to do this but we work on this every day. Jake has pretty much mastered putting his socks on, although it takes forever for him to do it. We’ve been working on putting his underwear on by himself and although he hasn’t mastered this skill yet; he is getting there.  It is funny though, he gets so tickled that he has trouble putting his feet in the right holes. Like most kids this age they want to do things themselves and Jake has the determination to have this skill mastered in no time!

Jake has his favorite foods (don’t we all) but he won’t eat anything else except the foods he recognizes. If you slip him anything “new” he doesn’t handle that well at all. Even foods he used to eat he won’t even try them again. But a couple of weeks ago we were at the grocery store and he saw Dora yogurt (I know not the healthiest) and he told me he wanted to buy Dora.  I told him what it was and that he would HAVE to eat it if we bought Dora…and of course like any kid does he told me he would. We got home and he wanted his Dora yogurt. I opened it up and handed it to him where he pushed it away crying and saying “Jakey doesn’t like yogurt”. Ughhhh!! So after trying to coax him into tasting it I remembered a song from Yo Gabba Gabba — “I tried it, now I like it”  So I started singing this song and do you know what??? He picked up his spoon and tried it and liked it!  I never thought I would say thank you to Yo Gabba Gabba but thanks guys for this song!

These are just a few of victories we have had over the past couple of weeks. Sometimes I get caught up in the BIG goals that I tend to not notice the small goals accomplished. Jake works just as hard on the small goals as he does the big ones! After this past week, if I have learned anything it is to enjoy each moment. Messy or not so messy, big or small they all matter. So we will celebrate each and every day, we will celebrate each and every victory!

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Hope

This past Wednesday we had our annual IEP (Individual Education Plan) meeting for Jake. These annual meetings are always long because we talk about everything regarding Jake. We had a lot to discuss as Jake will turn 5 in a few weeks which makes him eligible for Kindergarten in the fall. Our main goal has always been for Jake to go to typical kindergarten when we feel he is ready. But after reviewing what is best for Jake we see that he needs another year in preschool. Academically he’s ready but developmentally and emotionally he just isn’t there yet – yet! My hope (our hope) is that by this time next year he will be ready. It is really difficult when you work hard for a goal and it is within sight but out of grasp. I tend to get a little discouraged and I do the mom thing where I think what if…maybe I should have done this…I didn’t help him enough…I should have done… That being said, this is what’s best for Jake right now but because he isn’t ready this year does not mean he won’t ever be ready. There is hope.

I walked away from our meeting with mixed emotions. I was happy on one hand because everything I wanted for Jake we got. Not once did we hear the word No. All we heard was yes… ‘You want this service? Yes! That would be great…you want more of this?  Sure, here ya go!’ For those of you unfamiliar with IEP meetings there are some horror stories out there but we are fortunate that we have never had to fight for anything we wanted or needed for Jake. We are truly blessed with a great team of people and a school that values their special need students. They want Jake to succeed almost as much as we do! As I left the meeting feeling content with all that was discussed and pleased with the plan we have in place, I was sad at the same time. You see when you go to the IEP meetings you are told about your child’s strengths and weaknesses. You can see what goals your child has mastered and the ones that need additional time to complete. You see it all right there in black and white, the progressions but also the struggles. When you look at it all on paper it is somewhat overwhelming. My stomach does one of those somersaults; like being on a roller coaster. You know your child’s weaknesses because you work on them all of the time but to see it in print all lumped together…page after page of what needs to be done to get your child kindergarten ready, it sort of takes your breath away. It took my breath away.

As I drove home I went over all that was said in the meeting the sadness intensified. I allowed myself to be sad for that day and then I would get back to work (and I did). But what helped was reading about other kid’s accomplishments, kids that are similar to Jake. One child sang a solo in front of her school. The mom wrote how she would have not believed it if someone told her about this when her child was younger. Another mom spoke about her child and how the doctors told her that her child would never go to a regular school; how her child would always need one on one care. Her child is now a senior in high school with plans to go to college next year and live in the dorm.

I look to those who have walked this path before, it is comforting. I can see that I am not alone; I am not the only one who ever felt this way. It sort of gives me validation that it is okay to be a little sad. But I also see those “hooray” moments where this other child made progression beyond the parent’s wildest dreams and it gives hope. Hope that one day my child might make a similar dream come true; not just for me but for himself.

Hope is to expect with confidence. Hope is to believe in his unlimited potential. There is always hope for the things to come, the hope that things will get better and the hope that one day Jake will attend a typical kindergarten classroom.

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there is always a silver lining!

For the past two weeks we have been on winter break and let me just say it has been really nice! I love how our mornings are filled with snuggles on the couch, reading books, playing on the Ipad and no running around trying to get ready for the day. But all of that said, I am ready for school to start back this week. We all are ready to get back to the normal routine and if I’m going to be honest, I need a Jake break 🙂

I love this kid, he is funny, smart but trying to figure out his wants and needs can be really tiring at times. Because of Jake’s Sensory Processing Disorder, helping him stay regulated is a challenge at best. He is in essence, the energizer bunny. He just goes and goes and has difficulty calming down. Yesterday (Saturday), I had all I could take. Jake started off with a meltdown; I still don’t know what brought it on but all of a sudden he was screaming. Not the kind of scream that means he is hurt, angry or sad…something totally different. When kids like Jake have one of these major meltdowns there is not much you can do to help, sometimes they just have to have this meltdown to regroup. This is my own personal opinion. I tried massaging, the deep pressure kind that he usually likes, we jumped on the trampoline, we ran and bounced and crashed but the crying and screaming wouldn’t stop. Finally he calmed down enough to tell me he had to go potty but then he transitioned to this defiant kid who wouldn’t stand at the potty and then he started laughing. Not your typical laugh, more of an eerie laugh that is defiant and the more I told him to go potty the more he laughed. I had to walk away at this point which brought on more laughing, screaming and crying. This hour of my day was tortuous on me (and probably Jake). I knew something had to be done or I was going to sit in the floor along with Jake and meltdown too. I turned off all the lights, closed the curtains and turned on classical music. I brought this boy that I didn’t recognize into the den, sat with him on the couch and as we sat in the dark and listened to the music we both found our calm. Why is it that the last trick in the bag is usually the one that works…why can’t it be the first one we pull out?

These types of meltdowns take a toll on him and and me and it breaks my heart. As a mom I feel like my job is to help him, nurture him and protect him and it is most frustrating when meltdowns like this occur where I feel like my hands are tied. I cannot predict what will bring on this type of meltdown, we never know what will trigger this behavior and most often we just have to ride it out with him.

But there is always a silver lining! Jake is usually calm afterwards, he will sit with me, watch TV, read books, play on his Ipad and I’m not talking for the mere 15-20 seconds that we usually get. He is like this for an hour or two afterwards. He is usually very compliant, has good manners and best of all…he listens!

Last night as I was getting him ready for bed he snuggled up to me, looked at me and just smiled; the kind of smile I’ve tried to describe where it comes from his heart and shines through his eyes with all sorts of unspoken words. That right there is my silver lining!

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