‘I applied for at-home services through our primary insurance, but was denied. We needed to do a psychological exam and have a diagnosis. We did that and were still denied.’: Mother of autistic child receives act of kindness, support from community, ‘It takes a village’

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“Ever since I was young, I have always wanted children of my own. I come from a large family, so I babysat all the time. Even if I did not want to, I did. The crazy thing is, I didn’t mind. I really enjoyed it. If you saw me, I most likely had a child with me or a baby on my hip. It was just second nature to me. It felt like I was doing something right.

We found out we were pregnant with my oldest son, Julius, in late 2006. My then-boyfriend (now husband) was in the Army at the time. He was 22 and I was 24. We were both young, but very excited and scared to start a family. Anyone going through their first pregnancy has experienced those emotions. The pregnancy went great. He was full term and we had no complications.

Courtesy of Devon Shallenberger

Julius was diagnosed with autism at the age of 2. At the time, we went to his wellness child check and his pediatrician had noticed some things we didn’t see. Come to think of it, we didn’t even know what to look for. He said maybe we should get him tested because he has some quirks and repetitive behaviors that need to be looked into. He would sometimes flap his hands with excitement by his ears, make squealing noises unprovoked, tiptoe walk and line up any item in a straight line. This was in 2009, and I didn’t know anything at all about autism. Julius could do a lot of things a typical child could do, but he was different. He was very social in his own way and could talk.

As a new parent, the news sucker punched me in the gut. I was devastated and didn’t understand how my child could have autism. The word just ate my soul alive. I was crushed – not only for me, but for him. After taking some time to accept his diagnosis, we got him evaluated by a psychologist and officially received his diagnosis. Which was another gut punch, as she explained so many things I may have overlooked. I felt horrible, like I could have gotten him help sooner, or like I should’ve seen the signs. I cried almost everyday because I just didn’t understand what I did wrong.

You really beat yourself up as a parent when things are not the cookie cutter, white picket fence of your dreams. But as the strong person I was raised to be, I refused to let my child not grow to his fullest potential. So, I went on a book buying and research driven quest to get him help immediately. He received early intervention services at home. I will never forget her name, Megan. She was such a light to me in my own darkness. She treated Julius like any other child, and saw all of his potential. We all worked very hard with him everyday and saw changes that made me take a deep breath and say, ‘This new journey is going to be okay.’

Megan was just one of the many people along his journey that shaped the person I am so honored to call my son. He then attended the Intermediate Unit Autistic Support classroom for our county. And we met more teachers and aides who helped Julius thrive and become the best person he could be. Miss Nancy was another woman from the IU who played a crucial part in his early life. Her experience and heart for special needs children was a blessing. He went from not being able to write, read or comprehend common questions to being ready for Kindergarten. The way she taught each student made me look at how I approached him. Simply rewording how I said something to him changed everything. It just unlocked how intelligent he was. I was blown away. He would tell me things I told him that I didn’t even remember. He would know the time, day and who was there. It was phenomenal.

He did so well at the County Autistic Support Classroom, he moved to his actual home school up until 2nd grade. Mrs. Jorgi was another woman who played such a huge role in his development and social skills. She was not only his teacher, but a HUGE advocate for inclusion at school. Julius made so many friends there. He just blossomed. We did have a few setbacks once he moved to his new school, but with his IEP team, the transition went well. He was with his peers most of the day and only needed special support for maybe 30 minutes a day. He wanted independence because he knew he could do it. He then moved out of the Autistic Support Classroom and to his home school with his sister in 3rd grade. They got to ride the bus together and he felt like any other child. Which made my mama heart so happy.

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That ‘I can do anything mentality,’ has stuck with him ever since. He is now 13 years old and in 7th grade. He is taking and engaging in all his classes with his peers. He needs little assistance or constant redirection. If he does need help, he asks. Processes it and applies it in his own way. I am so proud of him. He made high honor roll in 6th grade and made honor roll for the first nine weeks of 7th grade. I am blown away at how far he has come.

His brutal honesty mixed in with his knowledge is something to experience. He will keep you laughing all day and will keep you on your toes if you are wrong. He now lets me join in when he is stimming and we make a dance out of it. Keep in mind it is brief because he is now a teenager, but pretty cool he still lets me into his world.

Courtesy of Devon Shallenberger

We became pregnant again in late 2009 with our daughter Jasmine. This was shortly after my husband returned home after an 18-month tour in Iraq. We knew we wanted more children. The pregnancy went fine and we had no complications. She is a typical kiddo who is 10 and the middle child. What I do know about her is she is so observant and understanding of her brothers. She always wants to be kind and for others to be kind to them. She understands her brothers have specific needs, but it doesn’t stop her from helping in any way she can.

She has played a major role in her little brother’s life, who I will go into detail about next. She learned how to do his adaptive signing so she can communicate with him more. He adores her and it warms my heart because they have a very special connection. Jasmine wants to be a special needs teacher when she grows up. And I tell her everyday, ‘Those kids are going to be blessed to have you. Your experience and heart is going to change so many lives when you’re older.’

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Our last pregnancy was not planned and we were definitely not trying. Both my husband and I are full-time, working individuals outside of the home. At the time, he was a security officer and still in the Army Reserves. I was working for a company in the real estate industry. We both worked opposite shifts, so I was the only parent who could really accommodate Julius’ doctor’s appointments or therapy sessions in and out of the home. It was a lot as it was. Working parents with a 4- and 2-year-old at home. It was insanity.

In mid-2011, we found out we were expecting our third child. This pregnancy was normal as well and we had no complications. Jackson, we thought, was developing normally. He was the most happy, smiling baby ever. He would smile so big his eyes would squint almost shut and all you saw was teeth. We thought he was going to be okay, just like his big sister. Until we started to notice his eye contact wasn’t like it used to be. He didn’t want to really walk and it looked like he physically couldn’t.

Never in a million years did I think he could be autistic. I thought it could be something else. The signs were not the same as Julius. He wasn’t a tiptoe walker or flapper. I know a part of me probably didn’t want to accept the fact, and I told myself he would walk or talk more when he was ready. I could feel myself internally going into denial, but my outer body would not accept it. Deep down, I knew something deeper was going on because he was so quiet and that was not my Jax.

Courtesy of Devon Shallenberger

I couldn’t continue the downward spiral I was on; we needed to get answers. Even though in my heart I knew the doctor would tell me he has autism. Like, who wants to hear you have another child with special needs? I was barely keeping myself together with Julius and everything he needed. How could I do this all over again and with a child that clearly was going to need much more intense help? At the time, I really started to shut down. I didn’t want to be around ‘normal’ friends or their children. It made me very sad and depressed. Because, for as long as I could remember, I wanted kids. Now I had them and it was not what I had picked in my head.

I questioned everything. I beat myself up. I told myself I was a bad parent. How could I miss the signs again? You go through so many emotions, and it is very hard to get out of them. And I think this is what changed my mindset with Jackson. Was I going to continue to grieve something I could not control, or suck it up and start the process all over again? I chose my child and went full force again, or so I thought.

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Getting help for Jackson was a long process in and of itself. At least 5 years had passed since we needed to go back to square one. And let me tell you, it was like a game of the unknown. Jackson was over the age of early intervention. I think he was 3.5 years old at the time. But I knew he would be in great hands with Miss Nancy at the IU. She was there and ready to help my son. It was such a sigh of relief because I thought things would go upward like before. But we were so wrong. She told us he was not responding to many things and we needed to get him more help. She could see he was severe and we needed to get the ball rolling asap.

So, I did. I applied for at-home services through our primary insurance, but was denied. We needed to do a psychological exam and have a diagnosis. We did that and were still denied. At the time, I didn’t know we could apply for county assistance for insurance only. After reading the very brief description, it was everything we needed. It would unlock so many things for him. I was so excited and applied so fast. But again, we were denied. They said our income exceeded the guidelines. I was so upset because I did not understand. I was not applying for cash assistance – even though we are not rich, just normal working class parents. I just wanted the insurance he was entitled to due to his condition.

One day I picked Jackson up from class in tears. I told Miss Nancy what was going on and how I can’t get him help.  She told me someone may be able to help me. And she came through again. She was able to help connect me with a person who could direct us in the right direction. Applying for the loophole program was what we needed to do. I must have had the most surprised look on my face, I had no idea what she was talking about, nor had I seen anything about it.

Needless to say, after applying TWICE, about 8 months later Jackson was finally approved for county insurance. We were crying and jumping for joy. All of the doctor appointments, phone calls and numerous stacks of paperwork finally paid off. He was finally going to be able to get TSS. He received intense Therapeutic Staff Support Services at home for a year straight. Miss Ann came almost every day. She worked so hard with him on simple tasks, like putting a ball in a cup, stacking blocks and simply following and understanding 1-step tasks.

Courtesy of Devon Shallenberger

Then here comes another hurdle we never expected. The Autistic Support Classroom was closing and being moved over an hour away. I was crushed because I knew him not being in school with a routine would only set him back. It would demolish the little progress we had seen. But he was receiving TSS, so I knew he was still in good hands. Jackson was only 4.5 at the time. He was clearly not ready to be thrown into kindergarten. He was not ready, and I did not feel it was safe. Jackson is an escape artist. If he sees open space or is upset, he will run. He has no sense of danger or his surroundings. We were terrified; I felt the new setting wasn’t appropriate for him. But we had no other choice.

I sadly picked up his items from the IU on July 12, 2017, and began the transition process to public school. I had a glimmer of hope when Julius’s prior Kindergarten teacher reached out to me saying she was ready to take care of my baby. Y’all, I cried so hard. Like the uncontrollable snot-face cry. The stress of the last month came out. I had no control because I was relieved. I knew he was in great hands because I knew her approach. And here came another punch to the gut. She was being transferred to the high school to help with transitioning high school students. I was so happy for them because I knew she was going to be amazing, but so sad because my son wasn’t going to have her.

But after meeting with the IEP team, we put together a plan and started school. They were even open to having his TSS in school for additional support. Which was phenomenal because he needed it. With his severe global delay, dietary issues, uncontrollable meltdowns and elopement issues. He needed her there. My sanity needed her there, too.

Everything was going great until the insurance reviewed his plan and felt TSS wasn’t working. Are you kidding me?? I thought it was a joke. But sadly, it wasn’t. He was being compared to some standard for autism and felt ABA wouldn’t be approved anymore. In reality, it was helping him tremendously. He was now able to follow simple directions, stack blocks higher, sign with hand over hand assistance, and follow unreferred tasks. He was making HUGE progress, but the insurance didn’t agree. We lost the appeal and TSS was no more.

I couldn’t believe it; we fought so hard to get services and in the blink of an eye they were gone. In Pennsylvania, there is such a demand for services, you need to be on a wait list. So, we regrouped with the IEP team and went into 1st grade. He struggled a lot. His elopement increased, which made me terrified for his safety. I would need to always hold or squeeze his hand so he wouldn’t run away. So on top of all the other triggers, I knew I needed to look into more for him.

On one Saturday in November 2018, I was picking Jackson up from social group. I saw a gentleman picking up his child and he had a dog. Not just any dog – a service dog. This immediately made me strike up a conversation. He was his son’s Autism Service Dog. I had never heard of this before and needed to know more. So I ran into this gentleman again, and he had the same uniform on as my husband. He was a correctional officer as well. Come to find out, he knew my husband. So, the conversation went straight to give him more information because we definitely wanted a dog for Jackson.

Courtesy of Devon Shallenberger

This was a very surface conversation because I had no idea what these dogs could really do. He referred us to his trainer and we went to a training in December 2018. The pups were ending their training program, so we saw the full capability. Another day that changed our family’s life forever. I left the park with swollen eyes from crying so much. These dogs are specifically trained for each child and their needs. The dog is trained to track their boys scent, so they can locate him/her if they went missing. And also help with behaviors that could be injurious. I told my husband, ‘We need to do this, like yesterday.’

I didn’t care what we needed to do. Sell the house, do fundraisers, whatever – we were doing it. We were told to come back on December 16th, which was actually my birthday. I didn’t want to because it 10° outside, but I’m so glad we did. We were informed an anonymous donor had paid for our training and his dog. We were in shock and I broke down. I felt like, ‘What did we do to deserve it?’ We’ll forever be grateful to that lucky angel of ours. We began training shortly after his dog picked him in late December. Our family completed the 12-month training and his K-9 is officially a service dog.

In this time-frame, Jackson gained the skills of listening, graduating outpatient physical therapy and following multiple-step directions. He was responsible for feeding his dog from the beginning to build a bond. He went from hand of hand assistance to now complete independence of having zero assistance with only verbal queues. We tell him it’s time to feed his dog and he follows us and does it. All by himself. Such a huge milestone. I believe every Autistic child needs a service dog. I will continue to advocate for this until I can’t anymore. It has changed his life for the better. K-9s For Kids has a special place in our family.

Courtesy of Devon Shallenberger

While training, we had noticed an increase in aggressive behavior and staring spells. After talking with our at-home support team, we started documenting what we saw and timing how long his meltdowns were lasting. They were daily, sometimes 15 minutes or longer. This is when I definitely knew something else was going on. I journaled with my boys, trying to apply what I did previously to help Jackson. And nothing was working. I again felt defeated. Until I turned to one page that made me recall the ‘meltdown behavior’ which had been going on for a while. Could this be why he is not able to communicate? So, after meeting with a doctor who was very well known, he wanted a full bloodwork done on him and an EEG. So we did. And we found out it was abnormal. He could possibly be having seizures. This made total sense because the behaviors were exactly what Jackson was doing (Aggressive behavior, staring spells, unknown crying, lack of communication and more).

Courtesy of Devon Shallenberger

After meeting with his IEP team over the summer of 2019, we came to the conclusion Jackson needed more support in school. So we were working towards it. And then March 13, 2020 happened. Which changed the world forever. COVID closed everything down. Both of our boys were not in school, not receiving therapy. Nothing. It was absolutely devastating because both routines were no more. We experienced so much regression I thought I was going to have a nervous breakdown. After meeting with his team again, the best decision was to place Jackson in an appropriate setting to set him up for success.

He is now thriving in his new environment. We’ve seen a huge increase in compliance, and willingness to learn. He has now started saying new sounds of letters of the alphabet. We are so hopeful for his future and to hear his voice again one day. We are still getting more bloodwork and tests done to figure out what’s going on in his brain and gut. But I’m very hopeful we will know more very soon. And we can adjust his treatment plan so he can continue to improve.

We just want to thank everyone who has been a part of our journey. Without these amazing, hardworking human beings, my boys would not be where they are today. It takes a village to raise special needs children. I’ve just been blessed and honored to be on this journey twice! To all of their Speech, Occupational and Physical therapists, TSS’s, BSC’s, family support teams and the doctors who heard my concerns and supported us, I want to thank you all from the bottom of my heart.

By hearing my story, I hope I can encourage you to never give up. You are your child’s best advocate. Regardless of what doors get slammed in your face, keep going!! Trust your gut and ask all the questions.

It is okay to cry.

It is okay to be angry.

It is okay to feel overwhelmed.

Just remember to start fresh every single day.

You can’t make better decisions for your child in a negative head space. I encourage you to join special needs groups on social media. These groups have helped me mentally because I know I’m not alone. Many families are going through the same things as you. Just remember you are not alone on this journey. This journey has a lot of bad days. And this is okay. Don’t focus on those. I encourage you to celebrate all the good things! That is a huge mindset shift, and it will help you look at the bigger picture.

I hope to inspire special needs’ families to take action. You are your child’s best advocate and I want you to lead with this attitude. As you know, many try to group autistic children in one category or umbrella. But you can’t. Each diagnosis, each behavior, each child is different. What works for one child, may not work for another. Autism is so complex. Just focus on your child’s abilities. Once you do, it will unlock another, different, beautiful world.”

Courtesy of Devon Shallenberger

This story was submitted to Love What Matters by Devon Shallenberger from Washington, PA. You can follow her journey on Facebook. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories about autism here:

‘That’s so sad.’ But we are NOT sad. I just wanted to squeeze him so hard and run right out of there.’: Autism mom says ‘His diagnosis is actually his superpower’

‘I don’t know his favorite color. He can’t tell me. I’ve grieved. Imagine not being able to communicate?’: Autism mom describes highs and lows of parenting, ‘He makes me a better me’

‘He looked right at me. ‘Mama, do you hear how happy he is?’ He couldn’t hear the TV over your happy sounds, but he didn’t care.’: Mom to son with autism shares sweet sibling moment

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