reflection

It is hard to believe that 2014 is nearly over. Looking back over the year I am thankful for all the progress Jake has made. As I think about where he was this time last year to where he is now; my heart is full of pride.

Last Christmas Jake didn’t want much to do with gifts. He tolerated the wrapping paper but he didn’t want to touch it. Allie unwrapped most of Jake’s gifts. When we would show him the gifts he received he would look at them and go back to the gift he received that was the most familiar; his trampoline.

This year was quite different. He bounded into the family room and checked out all the toys Santa brought for him. He noticed the wrapped gifts from Santa and his stocking. Allie showed him how to go through his stocking and I think he had a lot of fun seeing all the surprises that fell out. He wanted to unwrap his own gifts and tore into each one with excitement. Had I known he would be so thrilled with the wrapped gifts I would have wrapped more gifts for him. He walked to each new toy and played with them. He didn’t need much help and we didn’t have to explain what the toy was or how he should play with it. Jake had a smile on his face the entire day. Jake’s favorite gifts were the planes and helicopters he received; the characters from the movie Planes Fire and Rescue. He made the helicopter sounds, he scripted the movie word for word. Jake was in paradise.

Most of 2014 Jake has made huge strides in overcoming his developmental delays. He is talking more, we can ask him questions and get answers (when he feels like it). He has learned how to become more social and plays with his peers versus playing alongside them. Meltdowns and behaviors are fewer than in years past and Jake is able to verbalize his thoughts and feelings a bit better. Jake has had a great year!

I wonder what 2015 will be like not only for Jake but for all of us.

Allie has a year and a half of high school left. She likes to remind me of this all the time. She also wanted me to know that next Christmas she will be an adult, 18! “Yes, I know” I tell her but push that thought away. Time with her has flown by. I remember when Allie was Jake’s age. I remember when her list consisted of American Girl dolls, Barbie’s, Polly pockets and Little Pet Shop toys. Now she wants electronics, gas cards, shopping trips and clothes. I can’t help but wonder what Jake will be like when he is 17. But that is as far as I let myself go with that thought. Not because it is painful but I know how fast it all goes and I want to savor almost every moment that he is this age.

In the New Year we will continue with our therapies. Jake has tested out of regular speech therapy and we will move on to articulation in speech. He will continue occupational therapy and about 6 months more of physical therapy. In the spring we will enroll him in a social skills group which will not only work on his social skills but social thinking as well as how to play more appropriately. Jake’s behaviors will continued to be monitored and he will spend more and more time in his kindergarten classroom. We are fortunate to have a wonderful aid that will be supporting him and assisting him as needed. At home we will work on his fine motor skills, self-help skills as well as how to use his voice to communicate in a more appropriate manner. As I type all of this it makes me tired. But when I think about how far Jake has come this past year; I know he can do it all and will succeed.

I know several people who choose a word for each New Year to apply to their daily lives. It might be a word that motivates or inspires. Some choose a scripture based word to live by. Last year my word was Hope. Hope will be my word again for 2015. I like what it stands for and how it relates to not only my life but Jake’s as well. One of my favorite bible verses is Jeremiah 29:11; “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” 

Hope means many things for me personally. I have hope that Allie will continue to grow, learn and become a responsible adult. Hope for things to come; hope for success. Hope that one day Jake will be a contributing member of our society. Hope that his heart will remain compassionate, empathetic and strong. Hope that he will continue to grow, learn and meet each goal.

God has Jake. God has a plan for Jake and with hope and hard work he will have a great future.

 

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Jake’s Year, 2014

 

 

 Hebrews 6:19 “We have this hope as an anchor for the soul, firm and secure…”

 

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a calming presence

Jake is super excited about Christmas. He is happy to talk about Santa, look at his presents and loves the tree.

And then suddenly; he isn’t.

Too much talk about Santa, too much talk about the presents and the tree. Too much excitement. He melts down. Enough is enough! Jake continues to have difficulty verbalizing his feelings and the only way he can communicate, at times, is through his tears.

As I tuck him into bed we talk about Santa leaving him gifts. The puzzled look is clear on his face. I see it as a sign that he doesn’t understand so I try to explain to him what Christmas morning will be like. His eyes well up with tears. I am speaking to him quietly; nearly whispering in his ear. He starts to cry. He says he is scared. And the tears fall down his face. All I can do is lie on him, putting all of my body weight on his as he cries “more!” I have no more. I climb into bed with him and squeeze him tight. I try to push my entire weight onto him but it isn’t enough. His cries become louder but I don’t say a word. He can’t handle any more words. My touch is too much with the exception of my weight on him. I can’t comfort him the way I want to. I want to stroke his head or kiss him but this only makes his cries worse. I just lay quietly on him. He is nearly asleep and says he doesn’t want Santa. I ask him if I can sing to him. He shakes his head yes. I sing to him about baby Jesus. I tell him about how Jesus was born and his heartbeat calms. But then the tears come again. I ask him if he can tell me what is wrong, he shakes his head vigorously from side to side and cries. No more words, no more songs. I just sit nearby, praying.

We don’t see a lot of these types of meltdowns anymore but when we do they are difficult; as they always have been. I have written how as a mother I want to scoop up my child (no matter the age) and hold them, rock them and make it all better. But sometimes I just can’t. Sometimes they just need my presence to calm their aching hearts.

To see Jake’s face when he goes from being super happy to super sad is difficult to witness and so difficult to understand. It can happen in an instant, like last night. It comes from nowhere with no warning. And for me, I just want to know what happened in that second for it all to change. I reason with myself that if I knew, I could help him recover quicker. If I knew, I could make it all better. My heart felt so heavy and tears filled my eyes for this kid.

Chances are he will wake up super happy this morning. Chances are he won’t remember last night. But I will. Today I will tread carefully. We won’t talk about Santa as much and we won’t get overly excited about the presents. I will try to keep things mostly calm for him in hopes of not repeating last night.

As I’ve stated in my earlier posts; Jake is doing amazing things right now. He has come so far. But nights like this are the ones that keep things in perspective. Yes, we have come a long way and yes, we have overcome so many obstacles. But with all that being said, we have so far to go.

Like most of us, this has been a busy few weeks. We’ve had parties at school, Christmas programs and the excitement of Christmas. I know my older kids would reach their breaking point from too much. But I always found a way to make it better for them. I could hold them, talk to them about what Christmas really means. I could talk to them and bring them to a calmer state.

For Jake, I think it has all been building for a while. He seems okay with all the Christmas “stuff” so we tell him more, we show him more and push him to his limits (unknowingly) a little more. But unlike Jake’s older siblings when he reaches his breaking point it is hard to pull him back.

For the most part Jake has had one of the best Christmas seasons! He has loved the parties, loved seeing me at school and loved counting down the days to Christmas. We had my family over this past Saturday for a Christmas party and he was so happy! His smile was evident. He loved opening his gifts from his Grammy, Aunts and cousins. He loved playing with his cousin who is a year younger. He loved playing with his new gifts. He told everyone Merry Christmas. He smiled and allowed others to hug him or give him a kiss. He opened his own presents with that smile that little ones have at Christmas. Thinking about it all just melts my heart!

These things are what I will remember.

When Christmas is over, last night won’t be at the forefront of my memory. I will remember the smiles and the good moments which are greater and outshine the difficult ones.

 

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 Isaiah 9:6 “For unto a child is born, unto us a Son is given…”

follow-up to my previous post

Something didn’t feel quite right after I published my previous post, Early Intervention. I felt I needed to clarify a few things.

I always want my blog to be helpful to those on the spectrum as well as to the parents with children on the autism spectrum. But more importantly I want what I write to be honest. I try my very best not to sugarcoat anything and to be as real as I can be.

I feel like my previous post made it seem as if everything was perfect. And I worry that it could have possibly been read as if we have come to the end of our journey. I also felt like it could be misinterpreted to read that if you don’t receive early intervention your child won’t succeed. Neither of these points are what I was trying to say.

As stated in my previous blog posts, Jake has made huge progress over the course of the past 4 1/2 years. We are better equipped to go forward and utilize the tools we have to help Jake. Are we done with therapy? No way! Jake continues to need Occupational Therapy, Speech Therapy as well as Physical Therapy.  Jake continues to need the support of his aide while in the classroom at school. Jake continues to need verbal prompts reminding him to stay on task. In the spring/summer we plan to enroll Jake in a social skills group to further help him with his interactions with peers. Jake has made huge leaps and bounds but I feel we will always be working and learning and growing.

Early intervention is helpful but progress can be made at any age. Each child is different and each child will make progress at their own pace. Jake continues to struggle with a variety of tasks. For instance, he cannot brush his own teeth or dress himself. We work on these tasks often but have not made much progression. We will continue to work on new skills.

Jake has made progress BUT there is still quite a bit of ” work” ahead for us.

I always want my blog to be as honest as I can possibly make it without making it too long or wordy. I try my best to paint an accurate picture of Jake’s struggles as well as his victories.

Autism will always be a part of our life. I think we will always be working on different strategies to help Jake through the course of his life.

Thank you to all who read my blog, who comment and encourage Jake along the way. I enjoy sharing our story and hope that through Our Journey with Jake it offers support and possibly helps other parents going through a similar situation. Having an autistic child can make you feel isolated at times and this is one of the reasons I started my blog over a year ago. If, through our journey, I help just one other family then I’ve done what I set out to do.

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early intervention

Early intervention is key to helping your child on the Autism Spectrum! If I could tell anyone who may see some of the signs of autism or think that their child may have autism it would be to go and have your child evaluated!

This can be difficult to do. All of us as parents want our children to be “perfect” without any label or disability. It is hard to pick up the phone and call. It is hard to imagine what having an autistic child will be like. But ignoring the signs or not trusting your instinct could possibly make it harder for your child in the future. And my child as well as your child, is the most important factor. As a parent we want the best for our kids. We want to give them every opportunity to succeed. We want them to be loving, compassionate and to be contributing members of society. By making a phone call to set up an appointment to see if your child is on the spectrum is doing what is best for your child.

Jake’s story is like many others I have heard. Jake met his milestones but there was something that was just “off”. He was not imitating or saying simple words like mama or dada. He hated to be held or cuddled. He ate like a horse. He loved to look at the ceiling fans or any other toy that spun. He walked on his tippy toes. By the time he was walking and was able to play with toys, he didn’t really play as toddlers do. He would line his toys up, lay on the floor and stare at them. If a toy was out-of-place he cried. If we spoke to him he cried. If I tried to rock him, read to him or sing to him at bedtime he would scream. I remember how my best friend’s daughter came to babysit and we were talking about bedtime. I told her to just put him in bed, not to look at him or talk to him. I told her to just turn out the light and walk away. If she didn’t do this he would scream. The look on her face was questioning. I felt embarrassed that this was Jake’s bedtime routine. I remember wondering if she thought I was a bad mother for not snuggling him and singing or reading to him. But Jake couldn’t tolerate that close interaction.

What prompted my first phone call to our states early intervention services (Jake was about 17 months old) wasn’t that I thought he might be autistic but because he wasn’t talking. I saw a post on Facebook from a friend saying her daughter, who was the same age, was starting speech therapy. I thought, that’s what we need to do as well. A few weeks after my initial call a therapist came to my home and evaluated Jake. He failed all categories by a large margin. I was surprised to say the least. It was all hard to hear and process. But we dove into different therapies which helped. But along the way I knew I needed to have him evaluated for autism. This is going to sound a bit odd so hang on for a minute but when the developmental pediatrician said he was in fact on the autism spectrum, I was relieved. It meant I wasn’t a bad mom. It meant I had done everything “right”. I finally quit beating myself up. I stopped wondering ‘if only I had forced myself on him more that maybe he wouldn’t have so many delays’. I felt ready to dig my feet in and help this boy because I knew I had to do something.

By the time Jake was 2 1/2 he was involved in at least 4 hours of therapy per day. Most mornings we started at 7:30 where a therapist would come to our home and we would have an hour of speech, OT or developmental therapy. We would also go to an autism treatment center for ABA therapy for 3-4 hours depending on the day. I learned all that I could so when we weren’t in therapy we were working on what the therapists taught me. There was always a therapist at our home working with me and working with Jake. Our only free day was Friday and I lived for Friday’s!! It was hard. It was depressing. It was discouraging at times. But I prayed that it would help.

Many times I wondered if I would ever hear Jake talk, I wondered if I would ever see him play or enjoy being read to. My heart hurt for this child and selfishly my heart hurt for myself. I wanted so desperately for Jake to climb in my lap and sit with me to read a story. Jake would rather hide in a corner by himself. Jake would scream if I picked him up to hug him. Jake screamed if something disrupted anything he was doing. He didn’t enjoy being touched unless it was rough. He didn’t like to be talked to and he didn’t seem to like anyone near him. Much of the time he sat or played alone. My heart was so desperate for some type of response from my child.

Little by little, after many tears, after many meltdowns and after many very long days he started to interact with us. Slowly Jake found his voice and although he mainly repeated the words we said he had words and he had a way to communicate that was somewhat less frustrating for him and me.

On Tuesday of this week we had our annual IEP meeting. These are always long and somewhat depressing as we review all of Jake’s weakness’ and his strengths. Hearing all of his weaknesses that need to be worked on usually outweighed the strengths. But this meeting was different.

For the first time since we started preschool and more than a handful of meetings this IEP held nothing but positive affirmation that Jake is succeeding. We discussed how far he has come since we started going to this school. Three years later Jake is performing in the 90% of all kindergarten children, that is typical and neurotypical! Jake is able to be in a kindergarten classroom with no behaviors. Jake is playing with his peers, raising his hand, standing in front of the classroom to help his teacher or to write on the board. Jake is happy. Jake has reached most of his IEP goals. Our main goal for Jake when we entered preschool was to prepare Jake for kindergarten. To prepare him so that he would be able to attend a typical kindergarten class with minimal support. And we have met this goal!!

You heard correct; we met our number one goal! This is huge for Jake! I say we but Jake did it with our help. He is the one who goes to school every day and applies all that has been taught. He is the one who has to make the choices every day whether to melt down or use his words. Jake is the one who works his little tushy off to succeed. We were able to give him the tools but Jake deserves all of the credit for where he is at this point and time.

There is a saying in the autism community which states “when you’ve met one person with autism; you’ve met one person with autism.” I have yet to meet another child just like my Jake. My sons symptoms are different from some of my friends who have autistic children. But they are similar. Something I have learned on this journey is that what works for Jake might not work for another child and what works for another child might not work for Jake.

Because each child on the spectrum is their own unique person it can be quite difficult to find a program or programs that works best for your child. There is no liaison that can tell you what to do or how to to go about getting the services you want and need. I have had to go with suggestions, then do my research and figure out what program, strategy or plan works best for Jake. It is daunting to say the least. My friend and I have often said that I need a liaison!! Someone to do the research for me and help point me to what is best for Jake. Someone to guide me in making the best decisions.

But the best person for this job isn’t a stranger. It is me, the parent. I had to do it because I know Jake best. I tried to approach each new program without emotion. I tried my best to be realistic in what Jake could or couldn’t do. I had to go with my gut instinct and if something didn’t feel right I had to remove Jake from that situation. This was hard at times especially when others kept saying “it’s the best one”. I didn’t always do this in the beginning. I remember one instance where I was sitting with a paraprofessional and we were teaching Jake to use a spoon. He was screaming. He wouldn’t stop screaming no matter what the para tried to do. I wanted to put a stop to this but I knew the paraprofessional was doing what my BCBA (Board Certified Behavioral Analyst) told her to do. I sat there with tears in my eyes not knowing what to do. Finally my BCBA excused the paraprofessional and we worked on getting Jake to a calmer state. After he was calm and went to play she told me something I will never ever forget. She said “Laurie, you can say no at any time. Jake can’t speak for himself so you have to speak for him. It is okay to voice your concerns. If you don’t advocate for him, no one will.” In that moment I knew she was right. You see I am a people pleaser by nature. I don’t want to rock the boat and at this point and time I thought ‘who am I to say no, this must be how it goes’. Also because I was a new autism parent I figured everyone else knew better than I did.

But I listened to Jake’s therapist and from then on if I saw that someone working with Jake was not a match I made sure that person didn’t work with Jake again. It wasn’t personal; I had to stand up for my boy. This was by far one of the hardest jobs I encountered at the time; advocating and using my voice to speak for Jake.

I am so proud of where Jake is today and much of his success is because we started early.  And I have to say it is so rewarding to look back to where we were 5 years ago to where we are now. It feels amazing to see how far Jake has come. The emotions I have are nearly indescribable. The years of early intervention have paid off. To see Jake now is like witnessing a miracle. I had faith. I had hope! I continue to have faith. I continue to have hope!

 ‘We have this hope as an anchor for the soul, firm and secure…’ Hebrews 6:19

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a moment in time

There is a moment of pure joy each morning, it will last for an instant and then it is gone. I hold onto it all day in hopes of seeing it again the next morning. It is in this moment I can feel the love from my son.

I walk into his room where he is usually playing in his bed. As I open the door, his room becomes quiet. I kneel down to peer into his face and I see it. He smiles this glorious smile and on occasion he will say “good morning mommy”. Other times he just grins and smiles with this love shining from his eyes. He bounds out of bed ready for the day. And the moment is gone. But just for that second I almost can see into his soul. His eyes express what his words cannot. His eyes tell me he is happy to see me and that he loves me. Jake is able to use his words to say these things and very rarely he will use them appropriately, but most often it is just the expression that tells me what his words cannot.

There have been times in the early morning where Jake will look at me and say “I had sweet dreams about you” or “I missed you while I was sleeping”. He has said these words once each time but as you can see I’ve tucked them away for safe keeping. His words were unprompted. I have said these phrases to him on multiple occasions; but whether they are scripted or he was expressing his true thoughts and feelings; I hold on to them tight.

There were many years where Jake would avert his eyes as to not look at me. There were many mornings he would cry this scared cry when he would see me. There were many mornings of me talking to him while he tried desperately to get away. When Jake was younger I would lift him from his bed and he would wiggle as hard as he could to get out of my arms. I wanted to hug him, see a smile or to have him look at me; acknowledge my presence. It wasn’t there. Many mornings I was almost afraid to go into his room because I didn’t know what reaction I would get from him. I would always smile and say “good morning, my love”. I tried to do this quickly and quietly to keep a meltdown from occurring. Many mornings my heart hurt. Wondering what was going on in this little boys mind. Many mornings I would question and prep myself so it wouldn’t hurt my heart.

Being a mother of an autistic child can be painful at times. I wanted some type of happy reaction to my presence. I wanted that ‘I love you’ look. I would pray for the day where he would look at me and smile. I would beg God for a moment where my heart felt full of joy and not pain.

Now at age 5 (nearly 6) my prayers have been answered.

Autism is challenging and can be heartbreaking. Many people don’t see the heartbreaking moments. Others don’t witness those times where we desperately need something from our child and just can’t get it. Nor do they see those tiny milliseconds of a breakthrough.

As a mother of a child on the spectrum we have a lot of laughs. We have a lot of great moments and fortunately those moments outweigh the tough hours.

So I cling to the wonderful and exhilarating moments where my boy is just that…a boy. I allow that moment in time to sink into my heart and my memories. I hope each and every day to see more of these shining moments in time. They are sporadic and if I don’t pay close attention, I will miss them.

One of those magnificent moments happened this week. About two weeks ago, Allie had a minor procedure on her back. She had a suspicious mole that needed to be removed which ended with about 12 stitches on her back. One day she told Jake that she couldn’t pick him up because she hurt her back. After that he was afraid and wouldn’t really go near her. This past week she asked Jake for a big hug; he leaned in to let her hug him. She told him “Jake, wrap your arms around me and give me a big squeeze.” He looked at her and said “Sissy, I don’t want to hurt your back.” It was in that moment tears filled Allie’s eyes (mine too) as she said “buddy, my back is getting better you can hug me.” Gently he put his arms around his sister and gave her a little squeeze and then wanted to see her stitches. He looked at them and said “all done” and ran off to play. It was a short interaction but one that Allie and I will remember for the rest of our lives. He showed empathy not only with his words but with his actions. Oh my friends, this was HUGE!!

These are the moments that override the difficult and heartbreaking ones. These are the memories I hold on to tight; the ones that get me through the difficult days.

I thank God every day for those small but big moments in time.

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‘I think my God every time I remember you’ Philippians 1:3

 

 

 

This Christmas

Each year I think ‘this may be the Christmas Jake will be excited, he will get it’. Last year we came close. He hung an ornament; he liked looking at the lights. Christmas morning he enjoyed his toys and told Allie he wanted her to open his presents. But he didn’t understand it all. Well, I think he did but didn’t know how to express it. One of the things I am finding out about Jake is he understands long before we know he does; now that his speech is accelerating we are finding out that he remembers past events and moments.

This past Monday we got our Christmas tree. I told Jake we were going to get it and he was bouncing with excitement. He couldn’t wait. When we went to pick out our tree he took it all in, I could see by the look on his face that he understood. We brought our tree home and he was so happy. He wasn’t afraid as he had been in the past. He didn’t ignore it as he had done in the past. He walked over to the tree and touched it, put his nose up to the tree and stuck his arm through the branches.

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On Tuesday I told him we would decorate the tree. As soon as he came home from school it was all he talked about. As we began to pull ornaments out to hang on the tree, Jake wanted to put them all on with no help. He had a smile on his face the entire time. If he found one of sissy’s ornaments he would tell her “Sissy, this is yours” and would hand it to her happily. There were no tears, there wasn’t any running away upset…he was truly happy.

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On Wednesday he looked at the tree with all of the lights and decorations. He walked around the tree looking at each ornaments and smiled each time he found one of his. The smile and the look of contentment on his face was magical.

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We’ve talked about Santa. He seems excited that Santa is going to bring him all the toys in Target. He wants Thomas the Train, cars, movies, Elmo and just about anything else he sees. This is the first year he has wanted to make a Christmas list. He looks at his list over and over again and smiles.

We talk about baby Jesus and I tell him the story. His eyes grow big each time I tell him the story about how Jesus was born. He plays with the nativity and I tell him again.

On Thursday I hear him playing with the nativity and pretending and repeating the story to the figures. His face glows with pure happiness.

As I write this I think about how much he has grown this year. In January he was barely talking. He had behavior issues that we were trying to address. He would cry if something didn’t go his way, he would have a meltdown over anything.

Here we are in December and his behaviors are at a minimum, he doesn’t cry as much and instead uses his words. He communicates with us like never before. We ask questions and get answers. He remembers everything he reads and hears and sees. Nothing gets past him.

This Christmas I do believe Jake will get it; he already gets it.

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I am excited to see how the next few weeks turn out. Excited to see his face on Christmas morning when he walks into the family room and see’s the gifts under the tree. I’m excited to sit back and watch our boy enjoy Christmas.

It’s been a hard year in so many ways. Things have happened that I will never understand. But I won’t think about the difficult stuff right now; I will focus on this boy. I will enjoy the time I have with John, my boys and Allie.

Christmas is more than the gifts. It is more than the decorations, the tree and the yummy food.

Christmas, for me, is a time to enjoy each other, focus on what the season is truly about and a time to allow myself to sit back, relax and smile 🙂

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