Thriving

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all… ~ Emily Dickinson

There are so many things I hope for when it comes to Jake; too many to list. My first hope is that Jake will continue to grow, learn and become a competent member of society.

Jake has been in school for 7 weeks now and it has been quite the roller coaster for me. Jake transitioned like a pro; much better than any of us expected. This is a boy who likes sameness, he hates when things suddenly change and loves routines.

If you have read my other blogs about Jake being in kindergarten then you know he has done extremely well.  He loves going to school, loves being a “big” kid and loves his new teachers as well as his new routine.

A little over a week ago his special education teacher, Mrs. P., called me to tell me she thought that Jake would do better in a different kindergarten classroom. Mrs. P. felt that there wasn’t a strong enough connection between Jake and his teacher. I knew Jake was doing well but didn’t know that Jake and his original teacher just didn’t click. Because Jake does have autism and this is a big year for him, the administration wanted to make sure Jake got off to a good start. They felt Jake might have more success with another teacher. I talked to Jake about his new teacher and told him he would be in a different class. As I expected, Jake didn’t like that idea at all. He didn’t want to go to school and fussed when he got out of the car. I asked Mrs. P. to call me mid-day to let me know how he was doing; it was all I could think about that morning. When Mrs. P. called me I was relieved to hear that Jake loved his new class and loved his new teacher! When I picked Jake up that afternoon he was all smiles and said he had a great day! Jake had no behaviors to speak of and participated as if he had been in that classroom from the beginning. I couldn’t have been happier!

That night Jake was in a great mood. At dinner John, Allie and I had the best conversation with him to date. Allie asked him several questions about who he played with, who he sat by at lunch and if he loved his new teacher and friends. And he answered every question! Typically, Jake won’t answer who, what, when, why or how questions. He will respond with “I’m fine” which means ‘I don’t understand or I don’t want to talk’. But that night he said “Sissy, tell me more”. As far as I can remember this was the first real back and forth conversation we have had with Jake. He was engaged, he was eager to tell us he played tag, ran outside, ate his lunch, sang songs and read. He told us who he played with, who he sat next to and what books he read. We were all smiles that night. I had to contain my enthusiasm because I knew if I got too excited it would end much too soon.

Jake is thriving. He is learning and wants to do well. He loves to be praised and that is all of the incentive he needs. He loves that look on our faces when we catch him doing something nice. He notices our expressions and looks for our smile or words of praise when he is following directions or saying nice words.

This past Wednesday I had a conference with Jake’s new teacher, Mrs. J., Mrs. P. (special education teacher) as well as our occupational therapist. Jake’s new kindergarten teacher, Mrs. J, said she has been really impressed with Jake and his ability to follow directions and remain seated when asked. She told me that one day they were in their reading groups; Jake’s aide was helping another group, Mrs. J was with another and Jake was at a table with only his peers. She said Jake completed his work independently and when finished he went to her and asked her what to do next. Folks, this is huge for my boy! In the past Jake would have needed constant prompting, he would have started running around the room when his work was complete and he would NEVER have gone and asked what to do next!!!

Jake’s OT has been with Jake since he was 3 and commented on how well he was doing during her sessions and how his maturity has grown. I have to tell you, it was SO nice that the entire meeting was positive. They didn’t just spin it that way to make me feel good as they all know I need to know what “issues” he is having so we can work on these at home or with a therapist. It was ALL GOOD stuff!!

I left that meeting feeling so elated. That evening Jake and I had this conversation…Me: “Jake you are working so hard at school and I am really proud of you”; Jake: “You are proud of me (insert huge smile)”; Me: “I sure am buddy”; Jake grinning from ear to ear; Me: “I love that you are being a good listener and using nice words at school”; Jake: “I listen and use nice words? I do.” Me; “I am really proud of you”; Jake runs into my arms and I squeeze him as tight as I can and tell him I love him. He steps back to look at my face and sees me smiling, he smiles back at me and lets me hug and kiss him some more.

I am more than proud of this kid; I am pleased, glad, happy, delighted, joyful, overjoyed, thrilled and grateful!

It is incredibly hard for Jake to sit still, to listen, follow directions and understand directions. He needs a lot of breaks and is given the breaks he needs. Jake tries his best and his best will always be more than good enough. Jake’s teachers are listening to him, taking cues from him as well as setting him up for success. Jake’s team is working hard to make sure kindergarten is a positive experience so that he will have the confidence that he needs as he progresses in school.

Jake works hard each and every day. It is not easy but one of the things that I love about him and love about the school is that Jake is allowed to be Jake. They aren’t trying to change him. They reach him where he needs to be reached and work with him right where he is at that moment and time. Jake is pushed, expectations are high but not to the point of being broken.

Jake is exhausted by the end of the day which means we don’t see the same boy that goes to school. Some nights we see a defiant and unruly kid that has had enough of being “good”. Evenings are hard and sometimes downright impossible. Finding a solution that works for all of us can be tricky. Jake has meltdowns, he throws things, he is uncooperative and can be downright naughty. But I would rather him show these behaviors at home than at school!

My hope will continue to be that Jake will flourish, mature, grow stronger and will defy all of the odds. Someone said to me the other day ‘Jake is very social and loves other kids; I didn’t think autistic kids were social.’ Jake is defying the myths, redefining what autism means. I’ve requoted the following and you may have heard it before but I need to say it again, “when you’ve met one person with autism, you’ve met one person with autism.”

Each autistic individual is different. My child might be social whereas another might not be; my child hates to be touched unexpectedly whereas it might not bother another child. Autism does not define Jake and we won’t let it define him. Jake will define himself as he continues to grow and mature. This child is capable of things that we cannot predict and I am certain he will continue to amaze those of us that know him!

IMG_3468

 

Advertisements

taking care of me

I want to share something personal with you. Something I have debated about posting and am still not sure if it is the right decision. But I feel compelled to talk about this. I want you to know some of my struggles in hopes that it will give you some insight to who I am. Also encourage those you might share in similar symptoms to seek help from a doctor, talk about it with a friend or your family.

About 10 years ago I was diagnosed with clinical depression. I believe I have been affected by this for most of my life. Receiving the diagnosis was really a good thing for me. It helped me see why I did some of the things I did and why I felt the way I felt. Most of the symptoms I have listed below I have experienced with the exception of suicidal thoughts.

  • Fatigue or loss of energy almost every day
  • Feelings of worthlessness or guilt almost every day
  • Impaired concentration, indecisiveness
  • Insomnia or hypersomnia (excessive sleeping) almost every day
  • Markedly diminished interest or pleasure in almost all activities nearly every day (called anhedonia, this symptom can be indicated by reports from significant others)
  • Restlessness or feeling slowed down
  • Recurring thoughts of death or suicide
  • Significant weight loss or gain (a change of more than 5% of body weight in a month)

I was tired ALL of the time, I felt like I was worthless to anyone, I couldn’t make a decision to save my life, I couldn’t sleep yet I wanted to sleep all day long. I had no interest in anything; friends, family, kids; you name I didn’t care.

I battled this for a very long time. I thought I was not doing something right. I beat myself up because I thought I just needed to shake these feelings off. I didn’t know that it wasn’t something I could just shake off. And I really thought I was creating these feelings, I was responsible for being “sad” and it was up to me to change these feelings and thoughts. The more I tried the more depressed I became because I couldn’t do it. Which led me to beat myself up more, feel worthless and eventually sent me to a place that I couldn’t get out of.

It wasn’t until everything was going downhill for me that I realized I had a problem. John and I were not getting along, I was working a lot and left everything for him to take care of; the house, the kids….everything. My life, in my opinion, sucked. I wasn’t able to do my job fully, I wasn’t able to be the mother I wanted to be and I wasn’t being the wife I had promised John I would be. I wanted to escape it all.

Because John and I were having problems I decided to seek marriage counseling. I wasn’t sure if this was where I needed to go but I knew if I wanted to save my marriage and look into why I was so depressed that I needed help. The first appointment I went by myself and the look on the doctor’s face when we sat down, sort of scared me. I didn’t think I really had any issues; I blamed them all on John and anything else I could think of. The doctor started asking me a lot of questions and then told me he wanted me to see a physician. I knew I looked bad and felt bad but honestly I didn’t think it was horrible. But it was. I had lost about 20 pounds in two months’ time, there was no light in my eyes and of course I looked exhausted. I went through months of counseling and started medication. After about 3 months of therapy I realized how much of a problem I really did have and it wasn’t John’s fault. It was mine! I am thankful that John stood by my side, encouraged me and agreed to do whatever it took to put our marriage and our life back together. I worked hard, digging into some issues I really didn’t want to dig in to but it helped. I had to look at myself realistically and spend time changing some of the behaviors that weren’t healthy.

Learning I was clinically depressed helped. I understood why I did the things I did and why I couldn’t pick myself up on my own. My doctor suggested I take an anti-depressant. I didn’t want to take medication. I really didn’t but one day during a physical with my doctor asked me if I were diabetic or had high blood pressure if I would take my medicine. I responded with a quick yes. He then said something that continues to help me today…he said there is not a difference in a diabetic needing to take their medication or a clinically depressed person taking theirs. It keeps you healthy, it keeps you from becoming sicker and helps you have a better and more active life. In many ways this is true. I don’t struggle taking my antidepressants any longer. I take them so I can do the best job I can. So I can be a good wife, mother and friend. It doesn’t make me any less of a person.

It has taken me a long time to get here. I have shed a lot of tears, have many regrets. My depression caused many a heartbreak BUT finding the answer, seeking help and sharing my story keeps me healthy and happy.

Clinical depression is a disorder. It can squash your life and can ruin your life if not taken seriously. I am glad, in some ways, that I hit rock-bottom. It allowed me to seek the help that I needed at the time.

I do believe everything happens for a reason. Had I not sought help I wouldn’t be able to do what I do each day for Jake. I wouldn’t be able to do what I need to do for my family. I still struggle with the symptoms of depression but I know what to look for now, I know how to help myself so I don’t slip down that path again. It is a daily struggle in some ways. I will never be “cured” of this disorder but I have the tools that I need to help me function on a higher level each and every day.

As I write this I can’t help but think it is not that much different from Jake’s disorder. Autism, in my opinion, cannot be cured. BUT given the right tools you can learn to function on a higher level and be a contributing member of society. Autism will always be part of who Jake is just like clinical depression will always be a part of who I am. And neither disorder has to be that defining factor of who we are as people.

My job as his mother is to keep myself healthy. I need to take time out for me, I need to invest in my own personal health; mental and physical. If I take care of these things then I will be up for the challenges that we face each day. Taking care of me is a tool I need to ensure I don’t let clinical depression define me. Just like the therapy that Jake needs right now are his tools so that autism does not define who he is as a person.

As I said before, autism will always be a part of Jake. But given the right equipment he will be able to use autism to his advantage. Having a disorder is not the worst thing that can happen, it can be debilitating but when you use it to your advantage it can make you a better person.

jakemom

keep smiling :)

These first several weeks of school Jake has done well! We have had a few rough spots but overall he has adjusted to his new routine and is able to spend most of his time in the kindergarten classroom with the help of an aide. John and I are very pleased.

Since starting school, Jake’s vocabulary has skyrocketed! He is talking in more complex complete sentences. Last night, while I was making dinner, Jake was in the kitchen with me. He had on socks and was sliding around on the floor when he looked at me and said “do you remember yesterday? Remember how I was slipping and then I fell down. That was so funny!” Then he proceeds to laugh and slip and fall and then laughs again. This is a first for Jake. Although I know he remembers things but for him to voice it to me left me with my mouth open thinking, wow this is huge! I said to him “I remember buddy that was funny!” He smiled and slid away.

This past week we watched the movie Frozen for the first time. Jake really seemed to like it and has requested it over and over again. He will sing a few of the songs and his little voice is so sweet. Last night as I was cooking dinner and after sliding around the kitchen he was playing in the hall and singing “Do you want to build a snowman”. I started singing with him and he proceeded to act out the part where Anna is knocking on Elsa’s door asking her if she wants to build a snowman. If you haven’t seen it yet, watch it. It is really a good movie. Jake shut the door to his room and began knocking and said “sing with me mommy!” Again, this was a first. He acted out the part of Anna and sang the song word for word. I have seen him reenact other video’s but not to this extent. For the second time that night I was in awe of my little boy!

My heart melts like this more and more each day.

For those that don’t know or have not read any of my other blogs; Jake is autistic. Although he is 5 1/2 years old, developmentally he is about 3 1/2 – 4 years old. Jake acts like a 3 1/2-year-old and the world is completely new to him. He notices things now, things we have pointed out to him for several years. The look of awe and wonder in his eyes is something that is hard for me to describe. I guess it is just simply amazing! He can see the big trucks, fire engines, trains, airplanes, dogs, cats and anything else that passes by. He will say with the purest joy “look mommy, I see an airplane!!” Jake is also developing a sense of humor and loves to make us laugh. If he sees that he has done something funny he will do it over and over again to get a similar response. He can see us, he can see our expressions and understands to a point. Geez, it has taken so long for us to here and I am thrilled, proud and just ecstatic that we are where we are with Jake!

I work hard, we all do, to help Jake progress. And when the smallest accomplishment is made it is not really all that small. We celebrate, we tell Jake how proud we are of him and celebrate some more.

Some may call me obsessed with my needing to know and researching ways to help Jake. I probably am a little obsessed but I feel that right now I need to be. I need to know what and how he is doing at school so that I can work on things that need to be worked on or get him the additional therapy to help him keep on this progression track. I don’t want to stop or give up because we have come such a long way since we learned of Jake’s autism 3 years ago. Hope for his future keeps me going and even on my darkest days when I don’t think I can do anything else Jake will surprise me with something new and reignites that spark inside of me.

Jake has learned so much and works hard each and every day! This boy is pushed more than most kids I know, he is asked to do a lot and usually does so with a smile on his face.

Jake loves school! He truly cannot wait to get there and when we are in car line he is waving and saying hi to the staff with a huge smile. When it is Jake’s turn to get out of the car his face is shining! And almost every morning the person who helps him from the car says something like ‘Jake, you are so happy and you make me want to smile too!’ I love this about him. I know I have talked a lot about his smile but it truly is infectious! I see his teachers faces light up when they see him. Not just because they like him but because he is grinning from ear to ear. Jake’s happiness gleams from his eyes and shines from his face! Honestly when you see anyone who is this happy you cannot help but smile too.

Random accomplishments Jake has made:

Jake can hop on one foot. He can almost write every letter in the alphabet and it is almost legible. Jake can bounce, kick and throw a ball. He can almost hit a baseball off of a t stand. Jake can jump off of a short ledge using both feet, he can jump in the air using both feet. Jake is learning to color in the lines. He is using scissors like a pro. He is starting to be able to answer questions correctly about what he is reading. Jake understands and communicates with us on a much higher level than ever before. Jake is learning basic math and doing well. Jake is learning to slow down a little and is able to express his needs and wants verbally as opposed to crying.

These are just a few that I can remember off the top of my head. There is no way of knowing all that he knows but I am sure as he continues to progress and use his verbal skills we will continue to be blown away!!

We continue to climb this ladder of progression and I know in my heart of hearts this sweet boy will keep amazing us and making us smile 🙂

park71614 (3)