Thanksgiving :)

As I try to narrow down the best part of our Thanksgiving weekend I can’t say one particular thing was my favorite; it was all pretty awesome! Jake held it together and we made a ton of great memories for him. All four of my “kids” were home; I believe the last Thanksgiving we were all together was right before Anthony joined the army. This particular Thanksgiving is something I will hold on tight too and remember forever!

My oldest son, Anthony, came down from Iowa with his wife and 3 step children. Let’s just say Jake was super excited about this; I was too! On Thanksgiving Day we had a total of 17 in our small home; Grammy, aunts, uncles and cousins. It was a little warm, a little loud but Jake was okay with everything. He was just happy to have everyone at our home especially his cousins, Ella and Kaden. They spent a good part of the day playing with him in his room. That night as we were getting ready for bed I asked Jake if he had a fun day and his response was immediate, “yes, it was the best day ever!” This is what I wanted most for him!

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Anthony’s youngest, Kaden, is 10 almost 11 and technically speaking Kaden is Jake’s nephew but Jake calls him and the older kids his cousins. Makes it easier to explain. Although I think it’s kinda funny that Jake is 6 and has a niece that is 13 and two nephews that are 12 and 10! Anyway, they are all great kids. But Jake loves playing with Kaden and seems to really love this boy. If I were to guess, Kaden loves him too. No sooner had they walked into the house Jake said “come on Kaden, come to my room” and off they went to play. This boy is so kind and gentle with Jake. He showed Jake how play video games on the Wii and he was so patient with him when Jake became frustrated and cried. Several times I overheard Kaden say to Jake “Buddy, let’s take turns” and Jake would stop crying and respond with “yeah, that’s a good idea”. Seeing these boys together makes my heart so happy. Kaden isn’t hanging out with Jake because there is nothing better to do he seems to enjoy spending time with him.

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Friday night Jake wanted Kaden to spend the night with him. We have done this before and Jake really doesn’t want Kaden in his room but just in the same place. Fortunately, Allie was home and once Jake went to bed she and Kaden hung out. Saturday morning Jake couldn’t wait for his cousin to get up and play. As soon as he saw Kaden his eyes lit up and was ready to get going on playing trains, iPad and Wii.

Saturday night we went to the boy’s stepmother’s house for Thanksgiving. I love the relationship we all have with each other and I love that we are included as part of the family. There were about 14 of us at her home and Jake seemed unfazed. He had Kaden with him and was calm! At first I was nervous how Jake would handle everything. It was raining; Jake hates the rain because it really stresses him and he seemed apprehensive about seeing everyone. But as soon as we walked in the door Anthony and Nathan’s grandfather was there. Mr. Whitten said “hey Jake!” Jake looked at him and said “Hi Grandpa B. how are you?” Grandpa B looked at me and smiled and any nervousness I had was gone! Jake and I had talked about greeting people and what to say when they speak to him. This is where his social skills group came into play because Jake said he didn’t like talking to people. So I used the information that his therapist uses in their group and talked to him about how it made others feel when someone speaks to another person and they don’t get a response. Jake immediately said “it makes people sad if they say hi and don’t get a hi back”. Thank you Dr. Weatherly!! Jake spoke and said hi to most everyone who spoke to him, he smiled at family as they talked to him and even made a point to smile at me at 6:05! Seeing Jake enjoy two big family gatherings in a matter of days is something I will never forget! He had fun, he loved being with everyone and let us know when it got to be too much. He used his words instead of crying and melting down and had a smile on his face the entire weekend.

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It’s incredible how everyone we were around for the past several days sees Jake as a kid that needs a helping hand. They respect his personal space and allow Jake the time he needs to come to them when he is ready. If someone’s voice was too loud they noticed Jake covering his ears and lowered their voice so Jake wouldn’t be uncomfortable. If someone asked Jake for a hug and he said no they would ask him if he would hug them later or give them a high-five. The respect each person showed Jake was nearly too much for this mom!

The reason I mention this is because in the autism community too many times I read how family members either ignore the child on the spectrum because they don’t know how to relate or they talk down to the child. I feel blessed that we have a family that wants to learn and encourages Jake each and every time they see him. He is not another body in the room but truly a part of the family!

I am really thankful for how much Jake has grown over the years. Thankful for the friends and family we have and thankful that we have a day like Thanksgiving to show our appreciation to those we love and care about.

Thank you for reading my blog and the support you give not only to Jake but to me and my family as well!

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Allie’s 18th Birthday

Friday the 13th Allie turned 18! I know everyone says this but those 18 years have gone so fast! Just yesterday she was Jake’s age and now she is a legal adult. I got an email the other day from my pharmacy saying since Allie was 18 she is going to be taken off my account and given her own to manage. Just the day before she was 17…it was just a strange eye opener for me.

On Friday, Allie went with me to pick Jake up from school. Once he was in the car I asked him if he wanted to give Sissy his birthday present when we got home. He smiled and asked what he got her. I told him he knew and that it was a surprise for Allie. He looked at me and whispered “is it the giraffe?” I said “buddy, it’s a surprise. Don’t tell Allie what you got her.” He smiled and asked if the surprise was a giraffe. Earlier in the week Jake and I had run some errands and he spotted this huge giraffe and said “I have to get that for sissy, she loves giraffes!!” This little thing wasn’t so little to me, he thought of his sister and wanted to get her something she loves the most!

 

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Jake did really well when we went to dinner for Al’s birthday. It was loud and crowded but he held it all together. He played on his iPad, ate chips and his dinner as well as part of mine. It was so nice to go out to eat and not have to rush through dinner because he couldn’t handle the noises or the crowd. At one point Allie looked at me and said “he’s stressing.” I massaged his legs and arms and he seemed to calm down. His eyes were big and he looked anxious but he didn’t cry or beg to get out of there. He wanted to be a part of our dinner and have fun with his sister. He put all of his therapy into use and pulled it together. Seriously, my heart was full that night!

Jake was super excited about his sister’s birthday. Just a few years ago he couldn’t handle the decorations, the birthday candles on the cake and hated the birthday song. Birthdays were hard back then because we had to adjust how we celebrated at home. Just earlier this year he would run and hide from the candles. Back when we were in aba therapy we had our therapist work with him on the birthday song as well as the decorations etc. But on Friday night he made us turn off all the lights and sat right next to his sister as we sang to her and he watched her blow out the candles; it was as if he had done this all along. He also wanted to wear the party hat and blow on the loud horn (two things he would never do in the past). This moment, as small as it might seem, was a big deal. It was nice that Allie didn’t have to sacrifice our family traditions to accommodate Jake, something she has had to do since he was born.

 

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Allie knows Jake as well as John and I do, obviously. But the thing is she gets the challenges he faces. She sees beyond his appearance and can recognize when Jake is “stressing” and when he’s had enough. There have been times when she just wants to lay in her bed and relax but she’ll let Jake come in her room and play on her computer. During these times as I listen in there isn’t a lot of talking, just hanging out. I love this! I love that he wants to be with her just chilling (as Jake likes to call it). Allie used to beg him to be with her; now he wants to hang out with her and she just can’t say no. Love this!! When Allie is home he wants to be with her. He thinks she is so funny and enjoys it when he gets to play games and just be with her. There is an 11 year age difference and I worried that it would be too much; that they might not bond. But fortunately the bond they have is more than I ever imagined it could be. Allie adores Jake and he adores her! She is his second mom and works with him almost as much as John and I do. She is always there for him and wants to help him become more independent. She wants to see him succeed and is Jake’s biggest cheerleader!

The bond these two share is indescribable!!

 

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Love bears all things, believes all things, hopes all things, endures all things. 1 Corinthians 13:7

annual IEP follow-up & open house

First I want to breathe a sigh of relief; so glad that is over! I was a little anxious but I shouldn’t have been. The meeting couldn’t have gone any better!!

Jake’s team is amazing, seriously! I couldn’t have asked for a better school or a better team! To sit there and hear all of the positive feedback was, for lack of a better word, amazing! Jake is doing so well academically and is scoring in the top of the class. He is trying to be social and initiating conversations with peers. He is raising his hand in class to answer questions and following the directions of his teacher. He is now going to his teacher with questions as opposed to going to his aide. His aide is there to redirect him and work with him during those difficult times but we are seeing he is needing her less. We’ve decided to keep Jake’s aide with him during the morning as this is his hardest time but in the afternoons he will be in the class without his aide. Jake is also going into the library alone and checking out books without the help of his aide! He will go to his music class without his aide but will need her for PE and art. PE is so loud and sometimes Jake needs a break from the noise. His PE teacher felt Jake would benefit from the aide for a while. Art class uses a lot of fine motor skills which Jake is still working on so they felt he would need his aide’s assistance in this class as well. But overall he is becoming more independent and able function in the class more on his own! I can hardly believe it all! I mean, I can believe it as this is what we’ve been working on for SO long but it is strange to see it all come to fruition!  

I’ve said it before and I’m sure I will repeat it often but I just love our school! One of my favorite parts about the meeting was at the end when the assistant principal was reading the minutes. First, we have known her for a very long time. Ms. M. was the assistant principal when Allie went to the same school from second through fifth grade. She has known Jake since he was 3. She has been on his team from the beginning and has watched the progression in my boy. Anyway, as she was reading the minutes she stopped and cleared her throat. And said “wow, he has come so far!” I swear I saw a tear in her eye. It truly touched me! This just reiterates what I’ve known all along; she cares about my kid. She wants the best for him and loves seeing this success story that is unfolding before her eyes! I got a little teary eyed because my boy is doing what we’ve worked so hard for so many years to see; succeed in school. Jake’s IEP team has set him up for success, we took baby steps to ensure we were making the best choices and giving him every opportunity to thrive. And thriving he is!

On Tuesday of this week Jake’s school had their annual open house. We went to the book fair where it was a little loud and Jake did so well. He found his books and was ready to get out of there. His eyes were huge and his heart was racing but he held it all together. We went to the library to get some cards for the reading challenge going on at school and Jake saw one of his friends. In the past Jake would have hidden, he wouldn’t have talked to a classmate and would have told me he wanted to go home. BUT when his friend saw him she yelled “JAKEY!!” and they ran to each other. Jake was all smiles. His friend, R., is very talkative and immediately started talking to Jake. Jake wasn’t by my side, he was with his friend. As we walked to the classroom Jake and R walked together ahead of us and they talked the entire time. R’s mom and I were all smiles, as you can imagine! It was one of the best feelings I’ve had in a long time! To see my boy not clinging to me and walking with a friend is a memory etched in my brain forever!

When Jake got to his classroom and saw Mrs. S. he ran to her and gave her a hug! He couldn’t wait to show us around his classroom and all the work he has done. He was beaming with pride. Jake has struggled with handwriting but with each day it is getting a little easier for him. Here is something he wrote with no help whatsoever, he had to copy it from a template he made but this is his handwriting and his copying skills. Proud is an understatement!!

 

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I’ve used a whole lot of exclamation points here but geez, can you blame me?!?! This boy of ours is amazing. He is not held back by what he can’t do. He is not letting autism define who he is; Jake is becoming a contributing member of his society and I couldn’t be more proud!

 

Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers and sisters, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus. Philippians 3:12-14

 

 

 

annual IEP

Tomorrow we have our annual IEP (individualized education plan). Although it should be pretty straight forward these meetings always make me somewhat nervous.

I pretty much know how Jake is doing in school. I see his grades, talk often with his IEP team and I have the IEP draft. But still; my thoughts take me to all sorts of places. The unrealistic places that I feel I need to think about but know I don’t need to focus on. For example, what if something has been going on and they have decided to wait until the meeting to tell me. What if he is struggling more than I thought. The ‘what ifs’ kill me. But in my sane thinking I know that his team would have told me if something else was going on; I know that he is mostly where he needs to be and he is doing pretty well.

Having an IEP meeting is a great chance for me to ask all of my questions at once and get a true picture of how Jake is doing in school. Not just academically but socially as well as behaviorally.

This will be our 10th or 11th meeting in the 4 1/2 years we’ve been at Jake’s school. Most everyone involved is who we started with right before Jake turned 3. Wow! They know my boy and get nearly as excited as I do when Jake reaches a goal and becomes more independent. They also look out for him and watch him closely to see how he is progressing or where he might need extra help.

In all honesty; I’m actually looking forward to seeing everyone and hearing about Jake’s strengths and struggles. But my heart still races a bit and my palms still get a little sweaty!

Wish us luck tomorrow and pray everything goes smooth 🙂

 

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“Trust in the Lord with all your heart
    and lean not on your own understanding;
in all your ways acknowledge him,
    and he will make your paths straight.” Proverbs 3:5-6

don’t be afraid of the autism label

I’ve talked a lot about early intervention and how important getting an early diagnosis is as well as how it can benefit a child as they grow older.

Jake was 2 when he was diagnosed. In the very beginning I asked the question “how will the label of autism affect him? Will it help him or hinder him in the future?” The answers I received were immediate; the label of autism won’t hurt him. It will actually benefit him in the future. I wasn’t sure if I believed that. It was hard for me, in the beginning, to tell others that my child was autistic. I didn’t want others to treat him different or shy away from him. I wanted him to be treated as any other child would be treated. But the truth is, he isn’t like all other kids and if he were treated like any other typical kid it might hurt him down the road. This is strictly my opinion and how I felt as a mom of an autistic child. If I didn’t share Jake’s diagnosis with the school that Jake attends he would have been put in a typical classroom and expected to perform like a typical kid and he wouldn’t have been able to; we would have set him up to fail. And so far, in the 4 years that we have had our autism diagnosis, no one has really shied away from Jake; most people I’ve met at school or at the park or wherever we are want to know more. In many cases those people I was afraid of want to understand what autism is so they can help Jake or help a child they know that is on the spectrum.

Having an autism diagnosis has helped Jake receive the services that he desperately needed at a young age. Without this diagnosis Jake wouldn’t have received all the therapies that he needed; he wouldn’t have had the extra help from the special needs department at his school. When Jake was 19 months old we started all of our therapies. For nearly two years Jake received about 16 hours of therapy each week. This may sound like a lot to some of you and to others whose children are on the spectrum it may not sound like enough but it this is what Jake needed. I spent countless hours driving him all over the place to different therapies; therapists came to my home nearly every day to work with Jake. At the time our only free day from therapy was on Friday and it wasn’t really a therapy free day because as we played at home I worked with Jake. It was tiring and hard. There were a ton of tears from Jake and myself. It was hard and that is an understatement!

When Jake received his first diagnosis the doctor said he had moderate to severe autism. We were told he may never talk, he may never do things other children his age are able to do and he probably would never be in a typical classroom. Do you know how many times I have heard the same statements from other parents with kids like Jake? Too many to count! I think back and am glad I didn’t hold onto those words and let them devastate me. Don’t get me wrong, it was devastating to hear but I wanted to prove this doctor wrong! I remember going back to the same doctor a year later and this physician was shocked at the boy he was seeing. He couldn’t believe the leaps Jake had made in one year. I felt victorious!

As I speak to other parents with children who are newly diagnosed this is part of the story I tell them. But the first words are usually early intervention is key.

All of the therapy Jake went through was worth every long ride in the car, worth every tear and every penny it cost us out of pocket. At the age of 6 (almost 7), Jake is thriving. He is in the first grade with the help of an aide but as each week goes by he needs his aide less and less. The trouble spots we’ve had in the past are showing up less and less. He is able to follow directions a bit easier, he understands and processes things a bit faster and is a part of his class. All of this to say that without early intervention I don’t think he would be doing as well as he is today.

This is part of an email I received from Jake’s teacher. Jake’s aide had been out of school the entire week and Jake had several different substitute aides that helped him. Let’s just say I didn’t like this at all but that’s another story. I asked his teacher how Jake was doing in her class as well as how was he handling having different aides that were complete strangers. This is part of her response:

He is doing GREAT!!  It’s so funny because the sub assistants tend to sit close to him and try to help him and he doesn’t want their help.  He put his folder up to block the man that was there with him yesterday.  Today when there was another sub, I told the sub to sit back and just watch and help if needed.  That worked much better!  I taught a writing lesson today and 2 other first grade teachers sat in to watch along with Mrs. M. (It’s called visible learning where I teach a lesson that we all plan and then they look at ways to make the lesson even better and then go back and teach it to their classes.)  It was a long lesson that lasted over an hour and they had to do more writing than our previous writing lessons.  Jake totally persevered through the lesson and never once moaned or didn’t want to do it.  Mrs. M. was so amazed by him!!  I shared with the other teachers that at the beginning of the year if I asked him to write a sentence it was met with a lot of resistance and even crying and in just the couple of months that we’ve been in school, he’s come this far.  They, too, were impressed with him!

I want you to know what a blessing Jake has been to me!!  He helps me to persevere when I’m discouraged and I’m overwhelmed with everything that I have to do.  His smile makes my day (he has the BEST smile) and he makes me laugh!  He got tickled at me today (I can’t even remember what I did, but something silly) and he laughed so hard and said “you’re funny, Mrs. S.”  I said, “did I make you laugh, Jake?” and he said “yes!”  I love moments like that with him!!  He truly is a special little boy and I am SO lucky to be his teacher!!  I know you’ve had to work so hard and have made a lot of sacrifices to get him where he’s at now, but your hard work is paying off!!  : )

Editor’s note: Mrs. M. is one of the assistant principal’s; Mrs. S. is Jake’s fabulous 1st grade teacher.

This right here is why I am glad Jake was diagnosed early. This is why I tell the parents I speak with to try your best to not be afraid of the label. Autism is a part of our kids but it does not have to define who they are as a person. Autism is a part of Jake but there is so much more to him than his diagnosis!

This is my boy and I couldn’t be more proud!

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“Give thanks in all circumstances; for this is God’s will for you in Christ Jesus” 1 Thessalonians 5:18