self-help & social skills

It seems over the past few weeks Jake has gotten so big. Obviously he is a big kid, I mean at his checkup 2 weeks ago he measured 4’2″ and weighed 67 lbs. But his appearance and actions have changed. His language skills have grown and he is able to use more words to express himself. Part of me doesn’t want the baby to leave but the biggest part of me is more than ready. Because Jake is developmentally delayed he acts more like a 4/5-year-old. At times his behaviors are that of a preschooler and so are his words.

Our phases or milestones take longer and take more time than typical kids. So when we enter a new phase or reach a new milestone it is a Big. Dot. Deal! I feel like we have entered a new phase with more milestones to meet. It is exciting for me to see him grow and to be able to do things that other kids can do. Jake is really maturing and I know I’ve said this before but the kid works hard. He does his best to correct his own behaviors before I have to and he tries his best to use the words he knows verses pointing or crying. But I think the greatest thing Jake is learning is how to work on his sensory issues and find his calm on his own. He will go and jump on the trampoline or work with the exercise ball. At times he will put on his earphones, lay on his bean bag with his weighted blanket in his room. He doesn’t really voice that he needs a break but he is clearly listening to his body and doing the things we have taught him over the past 4 years to find his calm. For me, it is so cool to see him do all of this on his own without any prompting from me. The other day he was being really quiet in his room. I went to check on him and he said “I just needed some quiet, I’ll be out in a minute.” 

This summer I’ve been working with Jake on his self-help skills; something we work on all the time but I’m putting a lot more focus on these areas since we have more time. There has been a lot of tears and a lot of “I caaannn’ttt it’s tooooo haaaarrrddd” moments but he is doing really well. For the past several years I’ve been working with Jake to dress himself. This hasn’t been the easiest task due to lack of coordination and hand strength. But like everything else, he is slowly but surely getting there. This past Friday I laid Jake’s clothes out for him and asked him to get dressed. He cried, he ran away and he pleaded for me to do it for him. Then he grabbed his shorts and slipped them on with no problem. The whole time he was half crying and half smiling. Next came his shirt. This was a bit more difficult but after a few failures he had success!  He was so pleased with himself, as he should have been. He walked around with his clothes on like they were the finest made t-shirt and shorts. He didn’t want to take them off at the end of the day. Needless to say, he was so proud of himself. This is the first time he has dressed himself from head to toe with only verbal cues from me.

One of the tools we use to help with challenging tasks are social stories. If Jake can visually see what is expected of him he has an easier time understanding and retaining the information spoken to him. Social stories are awesome and work wonders with kids like Jake and typical kids too. We make up our own and use ready-made ones as well. They don’t always work but, again, like everything else with time and patience some part of the story will work.

One of my favorite shows for Jake to watch is Daniel Tiger’s Neighborhood. It is inspired by Mr. Roger’s Neighborhood; you know (if you’re old enough) when Mr. Roger sends trolley to the land of make-believe, the show is based on these characters. It is on PBS and geared toward preschoolers but Jake still loves it; I love it because it is packed full of social stories. The songs stick with Jake and when he gets into a situation many times we will sing one of the songs. An episode that was on recently was about making mistakes but if you keep trying you’ll get better. Click on the link and you can see the video of the song. One we sing a lot is “Just keep trying and you’ll get better“. Like many of us, Jake wants to succeed at his first attempt. But as we know sometimes it takes a few mistakes to get to the place where we want to be. We sing the above songs often when things get hard. By watching the social story on TV Jake can see how frustrated Daniel gets and how he deals with his emotions. It has really been a great resource for me when Jake is having a hard time. There have been times when I will put an episode on that is specific to something we are going through. Seriously, an awesome show and one that has helped us out a lot!!

Social skills don’t come easy to kids like Jake, they have to be taught. It is difficult for Jake to read emotions and social cues from others most of the time, especially from peers. He knows when I’m angry, cross or happy but I don’t think he understands when another child is experiencing these emotions. I am really excited about the social skills camp Jake will begin tomorrow (Monday). The camp is 4 days from 10-2 and Jake will attend it for 3 weeks. The curriculum that will be used is called Social Thinking. Through cartoon type characters it visually helps the kids see and identify different emotions they are feeling as well as their peers. Jake has been to social skills group therapy in the past and it has helped some. But going to a more intense camp should really help him understand social cues and the expected appropriate responses. Everything I’ve heard about this camp sounds perfect for Jake.  Where he is right now developmentally I really do think Jake will learn a lot. He seems excited to go to camp and play and this mom is a tad bit excited too. I get a break 🙂

 

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being an autism mom

I am sure people mean well when they say God only gives special needs children to special people.  Other phrases I’ve heard are I could never do what you do or God knew not to give me a special needs kid, I don’t have the patience for it.

To be honest, I really don’t like these phrases. I know they are meant to be encouraging and uplifting but I am no better than anyone else. I’ve made mistakes and at times I’ve not been the best parent I could be. What makes me “special” enough to raise a kid with autism? There are times I don’t have the patience and don’t feel like I can do what I do for another minute.

When you’re standing on the outside looking into my life I know it looks hard. Before Jake I might have had these similar thoughts. But when your child is laid in your arms for the first time, most parents I know look at their newborn and promise to be the best mother or father. They promise to love and protect their child and go to whatever lengths possible to make sure their child always feel loved, given opportunities to thrive and grow up to be the best they can be. So when we learned of Jake’s autism I didn’t have a choice. I knew that it would be hard, I knew I needed to have patience and a lot of faith and do what was best for Jake.

I’ve asked the question, why? Why Jake, why me, why us? I don’t know why Jake has autism and I’m at the point I don’t care. He is autistic and I’m his mom; that’s that. I do what I can each minute of the day providing him with the best care and support. It may not always be the right choice and it isn’t pretty much of the time, but I feel like I do what any other mother would do to help their child thrive.

I do the best I can and when I can’t do it anymore I rely on John to take over. Just the other day; it was one of those days. Jake was having a hard time and it didn’t help that I have a horrible itchy rash and want to claw myself ‘til I bleed. John came home from work and I left for a while to catch my breath. I went to Kroger alone…whoo hoo! But I was able to regroup and came back home feeling a little refreshed. 

All parents have their own challenges with their kids. Some typical kids are strong-willed. I have a couple of these types of kids. I would say don’t touch that, it’s hot. My son would look at me, then grin and touch the hot thing. Of course he would cry. I would tell him “danger, hot!” He would smile and say “dang er, hot” and proceeded to touch whatever it was I told him not touch. He is typical. My daughter has her moments as well, as did my oldest son. They are all typical and when they were small they each had their own “quirks”; things we had to focus on and work through.

It is harder raising a child with autism. There are so many more words; so much repetition and at times it drives me batty. We repeat the same action over and over again. Everything we do has thought behind it; ‘will this promote social skills, will this help with his handwriting, will this help him sit and listen’…the list is long. But at the end of the day all parents want to teach their children. We want to help them make good choices. Learn right from wrong. We want to encourage them to not give up and to stand up for what they believe.

God gave me Jake…that’s it. Just like He gave me Anthony, Nathan and Allie. When the older ones were little no one ever said to me God gave you these kids because you’re special. I do believe that God gave them to me for a reason. Being a parent is special in itself. We are entrusted to raise our children, to help guide them and lead them. And we have this hope that they will take the knowledge that has been given to them to do great things.

I’m a parent like many of you. I’ve been given a child with autism. I take my role as a mother very seriously and promise to advocate, provide opportunities and do everything in my power to give this boy the chance for success.

Maybe another way to say this is “God gives each of us what he knows we can handle; you’re doing a great job!”

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Psalms 127:3 “Children are a heritage from the Lord, offspring a reward from him.”

 

 

what “they” say

Week 3 of summer and we are finally finding our routine. All I can say is, it’s about time! Jake gives me a run for my money, almost by the minute. The other day I told Jake to put his shoes in his room and he replied “I am playing.” I told him I wanted him to do it now and just say yes ma’am. He replied “I am playing. Yes mam.” Now he feels he can give me his excuse and all will be fine if he says yes ma’am at the end.

We were getting ready to run some errands and Jake was bouncing off the walls. I was trying to get dressed, Allie was getting ready and Jake was running and playing with the dog, Lexi. I had started the dishwasher earlier and as I am walking down the hall I hear him changing the buttons on the machine. He runs because he knows he isn’t supposed to touch it. I calmly (not sure how I held it together) told him he needed some calm down time before we left. I sent him to his room with a book and had him sit under his weighted blanket. I wasn’t happy and he knew it by the look on my face. As I finished getting ready I told Jake he could come out of his room. I told him to get his shoes on. He walks into my room and looks at me with this apologetic face and says (this is totally unprompted), “Mommy, I’m sorry I touched the dishwasher. I am so so sorry. Yes ma’am.” He looks at me with this sweet face that is truly sorry. He has never apologized without prompting. There have been many times where I wonder if he understands some of the not-so-good choices he makes; clearly he does. My heart melted a little. Well, it melted a lot!

Many times “they” say our autistic kids don’t understand facial expressions. “They” say that it might not ever happen and “they” say that our kids will always have a difficult time understanding right from wrong. Our kids are a lot like typical kids. Whether our kids are verbal or non-verbal they know and just like typical children we have to teach it to them. It takes a bit longer and there is a lot of repetition but it can be done. It is up to us as parents to pick our battles. This “battle” I choose to pick is understanding the difference between right and wrong. If I don’t teach it to him he won’t know and chances are he’ll be on the news as one of those scary “autistic” people. One of the support groups I am in has a handful of non-verbal autistic children ranging from Jake’s age to adulthood. They understand the concept of right vs wrong. Just because a child cannot speak does not mean they don’t understand what is being taught.

We work on emotions and facial expressions. We talk about choices and we discipline. There is a lot of talking going on when working with Jake. I will often ask him “does my face tell you I’m happy or sad? Do I look happy or cross?” He knows. If he doesn’t we go over flash cards showing different facial expressions. Jake can be heard repeating these things when he is playing. One day, not too long ago, I heard him ask his favorite toy “do I look happy or cross?” He usually answers himself with “I’m happy! Yes, you got it!” He likes the happy expressions and cannot stand the cross or sad face. These faces almost scare him and he wants to change it to happy as quickly as he can. We all like the pat on the back and being told we did a good job; Jake is no different. He wants to see the happy face and usually will change his actions to get to that smile.

Being a parent is challenging in general. Having an autistic kid and looking beyond the diagnosis proves more challenging than I thought possible. When we started this journey I believed everything I was told. Someone might have told me your child won’t ever…or your child will never be able to …. I thought if Jake was able to do something “they” told me he wouldn’t ever do that maybe his diagnosis of autism was wrong. Maybe he wasn’t autistic. It took me a long time to see that each child on the spectrum is different; it’s called a spectrum for a reason (should have known this one). It took me even longer to see that I can teach Jake just about anything. I just need to be patient and remain calm and expect it to take a bit longer. I have to have faith and believe. I have learned to listen but more than anything to trust my instinct and believe that my child can and will do anything if given the opportunity.

Jake is smart. He can manipulate. He can be devious and push every button I have. BUT he is learning, absorbing everything and making better choices each and every day.

 

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Ephesians 4:2 “be completely humble and gentle; be patient, bearing with one another in love.”

 

tomorrow is another day

“Pick up your books, Jake” I say. Jake looks at me, crosses his arms in front of him and says “hmmmph, no thank you!” The first time Jake did this it was sort of funny. But now, not so much. I tell Jake to pick up his books or they will go to time out. He looks at me and this look tells me he is going to test me. He crosses his arms again and says “no thank you.” I tell him “this is the last time I am going to ask you to pick them up. Pick the books up.” He sits down, looks at me, testing me and says “mommy, I said no thank you. Isn’t that nice?” I’m at my breaking point and it is all I can do to stay calm. I tell him “your words were nice but I told you to pick up your books.” I pick up the books without speaking and put them in time-out. Of course he cries. The look on his face is pure shock. He cannot believe I put his books in time-out! He crosses his arms again and does the hmmmph thing and proceeds to scream and throw things. For safety reasons, I pick him up (not an easy task) and put him in his room. He is safe in his room and can’t injure himself or anyone else. I set the timer and tell him that he is time out too. As I shut the door he screams. The screams last for a couple of minutes then he is quiet.

Later that day he asks for his books. I give them to him. He leaves them on the floor and then we repeat the same transcript.

Our days are full of repetition. Jake asks the same questions and repeats the response given to him. He doesn’t repeat these just once, if allowed he will say the question and answer all day. At times I think he is trying to understand, to make sense of the questions and answers. And sometimes I think he is testing the limits. Over the past several days I really believe that he is stimming. Stimming is something kids do that brings them comfort or a sense of calm. It is usually doing something over and over and over again. They can count on it, they know the outcome and it is predictable. I know there are times his behaviors are simply behaviors and nothing more. But when we go through the exact same sequence of events it makes me wonder.

We’ve been on summer break for 2 weeks now. These past 2 weeks have been incredibly hard on Jake and myself. It takes Jake a few weeks to learn a new routine and to feel comfortable. It is a struggle.

The other day I was having a pretty big pity party. I usually try my hardest not to get to that point. I mean really, Jake is healthy and happy. His needs are met and he is learning, maturing and making huge progress. I have nothing to be sad about. He is doing well! But it takes so much time and patience and repetition to get anything from him and some days I just don’t have it in me to work anymore. I try my best not to compare Jake to others but on those days where I feel like I am about to lose it, when I think I cannot say the same thing again I ask the worst question you could or should ask, “why?” “Why is it so hard? Why does he have to have such a hard time holding a pencil, or writing letters? At school they say he blends in well with his classmates, why don’t I see this?” I see Jake with typical peers and he stands out. I see him with special need peers and stands out. Will he ever fit in?” “What am I missing and am I really doing everything I can to help this boy?”

The pity party lasts for a short time. I vent to John and a friend; I feel better and am ready to get going the next day. But it is all so hard. Being a parent in general is hard. When I was a young mom I thought by the time the kids were potty trained it would all be SO easy. It is easier but there are new challenges. Being Jake’s mom has its own set of difficulties. I know Jake is his own individual and can’t be compared to anyone. Same goes with my typical kids. But what we know and what we do are sometimes different. It’s like I’ve told Allie; stop, think and process what you know…predecide what you are going to do.

Having a child with autism is hard. There are times where I don’t feel like I can do it anymore. I don’t want to do it anymore. I don’t want to repeat myself or remain calm. I want to stamp my feet and throw a big tantrum. So I’ve predecided that since today is Sunday and we are all home, I am not going to do anything! I will let John and Allie take over; let them repeat and be the bad guy. And I’m going to take a nap!

As Scarlett O’Hara said “I can’t think about that right now. If I do, I’ll go crazy. I’ll think about that tomorrow.”

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Seeing this smile makes everything I do for him worthwhile 🙂