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Our Autistic Son

aidenparkWhere do I start? It’s hard to remember so long ago when our son was born. I do remember from the moment I saw him, he was different from his twin brother. I don’t know how I knew, I just did. It was a look in his eye, like he saw the world differently then we did. At home he didn’t cry much, he observed everything as his brother lay screaming next to him while getting changed. From that moment I knew he was different, I knew our lives would change and become harder, but for the better. At 5 months old Mason was crawling, Aiden sat behind and watched everyone around him. I tried to get him to crawl, put a toy off in the distance so he would want to get it. But he would sit staring at it. Mason would scoot across the room and grab the toy. I felt sad, I felt as if Aiden was missing out on these things. And I couldn’t help him. When he turned 7 months old, he started to do more things, he was catching up quickly. I thought maybe he was just behind and this was his breakout point where he just does everything he has been holding back on. I was sure that he was okay, that he & Mason would be best buddies forever. Time went by, Aiden stayed the same, at his first birthday him & Mason both stood up and walked. It was the best thing ever to see them walking. I knew he was okay.

Fast forward a few years & Aiden is now 3. He tapered off in his learning skills as Mason accelerated. I had that feeling again, that maybe something was wrong and it was hidden from us until now. Aiden started to become quiet and distant. He would line up his cars & toys by color and shapes. Sometimes he would sit in a corner and do a repetitive motion with his hands. I remember seeing these actions from a movie, and in the movie the little boy was autistic, I had no real idea what it was all about, just that kids that had it did these things. I did a search online about autism and what is was about. After I had read information about it I quickly went to Michael and told him what I had read and that I thought Aiden might have autism. A few months later Aiden started banging his head on walls, he wasn’t hurting himself he just did it out of habit. I remember taking him to his doctor and asking about it. She agreed that he could have autism. From there she referred Aiden to a specialist named Jon Roth and he diagnosed Aiden as Autistic. We got a referral for him to be professionally diagnosed at The Child Studies Center. My mother in law accompanied me. We were there for 5 to 6 hours while he was studied by 12 different doctors. After they were done we all sat in a room and discussed what they had thought. Aiden was diagnosed as Autism Spectrum Disorder. I wasn’t sad or upset, because I had always knew there was something wrong with him. I also had thought he had autism.

Fast forward again and Aiden is now in school, he is in Kindergarten. I had every hope in the world that his teacher’s could help him with speaking. Brenda Wiltz was his teacher. She was a gift from God. What I mean by that is Aiden would come home and would point at a picture of what he wanted, finally we had a way to communicate with Aiden! We had a breakthrough, we were able to give Aiden what he wanted. That led to less meltdowns because he was less frustrated. Months went by and Aiden slowly learned more communication skills, we were so happy that he was learning so fast. We still haven’t heard him speak yet, he is 5 1/2 years old at this point and has never spoken a word. We always wondered what he would sound like. Nearing the end of his school year, I received a phone call from his teacher. She had excitement in her voice. Aiden spoke! What a glorious day that was! She finally broke through his barrier and got him to talk! We were so excited to have him come home so we could hear his voice. Later that day Aiden arrived home. He walked in the house, sat his stuff down and grabbed a bowl like he always does for his crackers. He looked up and me, pointed his finger at me and said “I want, crackers”. Tears filled my eyes, I couldn’t control myself. I started to cry, I was so happy to hear his beautiful voice! I will never forget that day. How heavenly his voice sounded. I knew from then on it would be so much easier to figure out what he wanted. At first it was baby steps, he could only say “crackers”. We tried to teach him more words, but he didn’t catch on well. I figured it would be better to leave the teaching up to his teachers.

Time went by and Aiden learned more and more, at this time he is now 6. Aiden can say a few words now, his vocabulary consists of the words “crackers, juice, cookie”. Aiden’s meltdowns are increasing as he gets older, it’s harder now because he’s much bigger & stronger. He is now realizing he cannot communicate like everyone else can and it is making him very upset. When he tries to tell me something and I can’t understand what he’s saying, he throws a huge fit. Sometimes he breaks things or hurt people. We usually put him in his room and let him throw his fit in there where he is safe.

With Aiden doing good in school and Aiden becoming more verbal and aware of the world things were going well. Then one day in mid December Aiden started to run a fever, I took him to his doctors and they said he had an ear infection and gave him antibiotics. Seven days later we woke up to the sounds of my son Mason screaming that Aiden is throwing up. I went in to see what was going on, Aiden lay on the bed. He was pale, blue and barely breathing. I yelled for Michael to come quick. As he tried to get Aiden to breath I called 911. Aiden was rushed to Children’s hospital. We later found out he had a febrile seizure from a bacterial infection in his ears. The infection had become resistant to penicillin. In the hospital they gave him strong antibiotics daily. After the second day Aiden came around and was awake. Later in the day he ate some dinner and watched his favorite movie, Finding Nemo. We were so relieved to see our son awake and eating. After Aiden was released from the hospital we were told he had to have ear tubes put in to prevent another infection like that.

Fast forward awhile and Aiden has had his tubes in for a few months now. We learned he was having hearing problems from all the fluid that sat on his ear drums. This meant Aiden can hear us now. He would laugh at sounds he never heard well and listen closely to his favorite toys. Pressing his ear to them and squinting his face in excitement. After a while Aiden was listening better to us, following commands and telling us what he wants. Aiden continues to have bad meltdowns, he screams very loud and hits himself. His yelling pierces right through your ears and head. It shatters your ear drums. He will continue to scream for a half hour or more. This can be very mentally and psychically draining on us. Taking care of a child with autism is not an easy task by any means. They are very intricate people, Aiden has to have everything the same, always. He eats the same foods, he has to have the same drinks, same movies and of course, his cars. Aiden has over 200 hot wheels cars. He loves every single one of them and he knows when one is missing. I don’t know how he does it either. If one is missing we have to find it as fast as we can or he will have a huge meltdown very fast.

Aiden is now 7, he still doesn’t talk much. Only communicating by saying “I want” and saying what he wants. He will repeat what you say, but he does not understand it. I do not know if Aiden will ever speak in sentences. I will love him the same if he never does, he is my baby and I love that about him. His mind is at a level of a 2 year old. He is like a giant baby. What better gift then to have a baby forever? He never tells me no, never tells me he hates me. He is just full of love for me. Even when he gets upset and has his meltdowns, I know he still loves us.

It is nearing the end of April now, Aiden has been healthy, no bad ear infections. After Michael and I came back from vacation, we picked up the kids and went home. No more then 2 days after coming home I found Aiden laying face down in a pool of vomit. I picked him up, and he was responding somewhat at the time. When I noticed he couldn’t stand anymore and almost passed out I ran to the car and drove him to the nearest hospital as fast as I could. I knew I could get there faster then an ambulance could. It took me 5 minutes to get him there, rushing him in the nurses saw me carrying him in my arms. I wasn’t asked to fill anything out, they just opened the doors for me and I ran back there with him. In no time the room was full of medical staff removing his pajamas and sticking IV’s into him. In a matter of minutes Aiden had a million wires and tubes coming from him. Aiden was not breathing very well, he lay there helpless. I felt my world crashing down on me. “What is wrong with my son?” I asked. The doctor had told me they weren’t sure, and didn’t know if he would live. I called someone from my church group and had them send out prayer requests. I was distraught and had no idea what to do. I couldn’t breath, I couldn’t see from all the tears in my eyes. I wanted to hold my baby and tell him he’s okay. The doctor came in and told me Aiden isn’t breathing like he should and they don’t have the equipment to stabilize him. Aiden was rushed to Children’s Hospital via medivac. Once there he was taken to ICU immediately,  I was asked a million questions, if he had taken any medicine. What medicines were in the house, do we have drugs in the house. I told them all my medicine was in a lock box. At that point Aiden started to shake and jerk his legs and arms, the nurse quickly held his head up as another nurse ran out of the room and came back with a syringe of medicine. She pushed it into his IV as fast as she could, not even a minute later Aiden stopped seizing. We found out that Aiden had another seizure, but not a febrile one. This time it was caused by his brain alone. The febrile seizure had damaged a small part of his brain which now makes him have seizures.

Aiden now has to take Keppra everyday. Keppra is a anti-seizure medication. Thankfully it comes in liquid form as Aiden refuses to take pills that aren’t chewable. As I had mentioned before, caring for an autistic child is very hard. But it can be very rewarding. Aiden is extremely adorable. He repeats things he has heard from his toys. On Christmas years back he had received a toy apple that sings the alphabet and talks. When he’d turn it on it would say “Hi Kids!” so now Aiden will walk around and randomly say that. I love hearing things like that from him. Back on the track of what I was talking about before. After Aiden had his seizure his moods changed drastically. He would throw horrible fits, so horrible that he had to be sedated in the hospital before he was released to go home. This was the day we were supposed to be leaving, and he was out of the ICU and in a regular room. Something had triggered his meltdown and it went down hill fast, Aiden began screaming. Screaming so loud that nurses from the second floor above us could hear him. I asked his doctor about giving him medication to help him calm down, he said he would discuss it with the prescribing doctor. As he was doing this Aiden got worse, I tried to hold him so he would know everything was okay, bad idea. Aiden scratched me with his nails and ripped pieces of my skin from my arm. He tried to bite me and kick me, he threw things around the room and I didn’t know what to do. Standing there I started to cry out of emotional and psychical exhaustion . I had been standing for almost 48 hours, I couldn’t sit down or Aiden would try to rip his IV out and run off. I could only sit when he would sleep, which wasn’t very often. As a result of standing for that long my legs swelled up three times their size. It took a week for them to get back to normal again. Finally Aiden’s doctor came back in and gave Aiden a shot through his IV. At this time Aiden had fallen asleep behind a chair in the room, he felt comfortable hiding back there. The doctor had to crouch down behind the chair and give him his medicine.

About four hours later Aiden was released from the hospital, he was excited to be going home. A few months later Aiden’s meltdowns became destructive, he would kick his walls, bang his head on them or pick at them until he made holes in the walls. We live in an apartment at the campus my husband Michael goes to school for his degree in Computer Science. Aiden is destroying walls of a home we don’t own. This cannot be good. Michael has to keep repairing the walls, by now he has repaired them about 5 times in a month. When we are told we have to switch apartments so they can have all married students in one building and I panicked. What am I going to do? How will I fix this to where we don’t have to pay a ton of money to have it fixed. We try to paint and texture the walls to no luck. You could see it had been extensively repaired. After we move out we are dreading to hear how much it’ll cost us. A month went by and we get the call from the phase manager wanting to meet with us. At the meeting I was told it would cost $970 to fix the apartment, my jaw dropped. But since my husband had money left on one of his school loans we were able to put it on there. This means that we don’t have to pay it now but we will when he graduates in December of this year. A huge sigh of relief considering we have two other kids in addition to our twin boys. We have a little girl who will be 4 in September, and a baby girl who just turned 7 months old. Very busy household, and very little sleep.

Taking care of Aiden & the baby is like having twin babies all over again, they both do the same things. They feed off each other, meaning if one cries the other will start crying. Aiden tries to steal his baby sisters toys all the time. His favorite toys are baby toys and ones that make music. He doesn’t get the concept of imaginary play, so he favors baby & toddler toys. We are now moved into the new apartment, since they are all laid out the same way it was easy to make his room look like his old one. I put the same wall decals up, put his Nemo poster up on his ceiling so he can look at it while laying in bed. I made everything as close as possible to the old room. To be honest I’m not sure Aiden really understands we moved. The place is just flipped, nothing different. Some would argue that he indeed knows that we moved and knows more then we say. But to be honest, we raised him, we know him and I would say he doesn’t realize it to the extent we do.

Aiden has been stable in his seizures now. He has only had a beginning sign of a seizure, which we stopped with his Keppra and has been fine ever since. His meltdowns are still pretty bad, I don’t know if that will ever change. Autistic children have meltdowns, they get angry, they get frustrated. They just can’t express it like we do. Think of it this way, if someone took away your voice and asked you to tell them what you needed or wanted, you would get angry too. Nobody would be able to understand you fully. I’m not sure Aiden will ever talk like us, I don’t know if he’ll ever get past the two year old level he is at right now. If he doesn’t I won’t mind at all, because I am pretty happy with the way Aiden is, despite his meltdowns and his screaming. Even if I get frustrated when he screams, I always have to remember, he is much more upset then I’ll ever be. He will always be more frustrated, and more sad, because he can’t express it like we do, he can’t deal with it like we do, and that’s okay for me. I love my son Aiden, with all my heart. If he wasn’t born this way, I don’t think my life would be the same. Aiden has taught me so much more in my life, I see things differently now. He has made our lives very special. I will always love my little boy, and I hope he stays my little baby forever. Don’t ever change Aiden, the world wants you to, people we know want you to. But mommy & daddy will never want you to change, you’re perfect in our eyes. Having an autistic child opens your eyes to a world you never knew before.

So if you have an autistic child and are afraid of what may happen or are unaware of what it means, don’t be afraid. Your life will be great, sure you will be stressed out and tired. But you will have a little person who loves you unconditionally, who will always need you, someone who will never turn their back on you, or slam a door in your face. You will forever be caring for a child who wants nothing but love from you in this world. Don’t beat yourself up if you get angry at your child, it happens. It is a stressful world to deal with, but at the same time it’s also a beautiful and rewarding world. I hope that my story has helped in some way, shed some light on your life. Letting you know you aren’t alone. That all parents of special needs children go through a tough time, but they also love their child. Special needs children are gifts from God, they let us see what we couldn’t. They make us become better people then we were before. We will always struggle with the day to day life of taking care of them, but our hearts will be filled with love for them.

3 comments on “Our Autistic Son

  1. Truly heartwarming reflections of a Mom, a family that has challenges, but a family that will take care of one another. Just beautiful and thank you for pouring your heart out!

  2. Everytime I read this you touch my heart again, Jen! Aiden is blessed to have such a loving mom.

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