My Journey As A Special Needs Mom
Aiden\'s Journey With PDD & How I Survived Being A Special Needs Mom.
In this blog I want to encourage those that read this-women, teachers, mothers, and families.
This journey that we\'ve been on has been a very tough, trying journey. It also has challenged our parenting skills as parents. But the progress that Aiden has made is amazing.
I want to start telling you everything that happened from the beginning.
As you read, I am sure there will be symptoms you can acknowledge with that your child maybe facing, or relate to how I felt as a mom going through this whole situation.
My oldest son Aiden is my first baby. I am very close to him and very protective of him. And that is for a good reason. Even though I had somewhat of a difficult pregnancy with Aiden, I did not think that our journey as parents would be so rough.
As an infant Aiden would never make eye contact with us. He would always look over our shoulder or over our heads. We used to say that he was probably looking at Angels.
We took Aiden to Hyderabad, India for a one-month vacation for his 1st birthday. He absolutely loved it of course! On his actual 1st birthday, Aiden just got up and started running. As I like to say, Aiden did not walk, he ran when he was a year old.
As months went by we started noticing Aiden was not making any words. He was 1.5 yrs. old still making baby talk. To me I knew something was wrong. Since the time he was a baby, I knew something was off with him, and I just couldn\'t put my finger on it!
As a mother you start comparing your child to your friends kids who are the same age as him. Your friends or people will say, Oh don\'t compare his development to other kids. Or the popular one they say is, Boys mature later than girls. It\'s normal!
I\'m sorry, but my child not being able to say mama or dada on his own is not normal to me!
We took Aiden to his pediatrician, and he too expressed his concerns with Aiden\'s development. The pediatrician immediately suggested that we start with Early Intervention and see a pediatric neurologist to rule out Autism.
At the time I was thinking what the heck is Autism! I\'ve never heard of it!
Aiden\'s symptoms were somewhat overwhelming to deal with at times for me.
Not only was he non-verbal, he was very hyper all the time, and he would also get sensory overload whenever we would go food shopping or take him in places with large crowds. He would cover his ears screaming & crying. He would always throw these temper tantrums and we would try to help, but it was so difficult for him to communicate with us since he was not able to talk.
When we would take him shopping it was too much for him to handle. Between the bright light, the colors, the people, the music, and the noises-it was just to overwhelming and over stimulating for him to handle. Which is why he would act out the way he did. And being non-verbal, all Aiden could do was cry & scream.
As a parent you feel helpless when your child goes through things like this! I remember there were times I would cry myself to sleep every night, because I was so overwhelmed dealing with Aiden’s issues. I used to cry to God saying, “How could you give me a child like this!? You said you would NOT give me more than what I can handle, and I feel like I can\'t handle this child!”
But deep down I knew God gave Aiden to us for a reason!
The whole time Aiden was getting evaluated by Early Intervention, and me feeling overwhelmed as a parent, I also felt very alone. I felt like whoever I talked to just would not listen or give me the time of day. And as a mother that is very frustrating! I could not relate to anyone because they were not going through what I was going through with my kid.
Going through this journey with Aiden also showed me who my true friends were. I feel awful when I see other mothers writing saying that they are really alone, and all their friends have ditched them.
If you are reading this, don\'t worry! I have been exactly where you are! I know how you feel! Because of my situation with Aiden, I realized I had more acquaintances than friends. And that\'s what hurts the most. But you\'ll soon realize who your real friends are. True friends are the ones that stick by you no matter what, and check in on how you & your child is doing.
I’ll never forget how I took Aiden food shopping one day. He of course was screaming and crying, just acting as he usually would whenever we had to run errands. This mom saw how I was looking at my shopping list while trying to deal with Aiden. She could see how flustered and overwhelmed I was. As she passed me she patted me on the shoulder and said,
“I’ve been where you are now, you’re going to get through this! You’re doing a great job!”
After I put Aiden in his car seat and loaded the trunk with groceries, I sat in my driver’s seat reflecting on what that woman said to me... I could not help but cry. It felt so nice to have a mom understand what I was going through and to encourage me. I realized from that day our family was not supposed to be an average family. We were going to do things our way with people staring at us or not, whether they supported us or not. And if they did not like it, they can get over it!
After the evaluations with Early Intervention was completed the child study team recommended that Aiden needed speech therapy and occupational therapy. At the time I had no clue what we were heading into regarding all of these therapies.
Our first pediatric neurologist that we saw was not that great in my opinion. All he told us was that Aiden was a delayed toddler, and that he would be okay with getting continued speech & occupational therapy. What the doctor failed to tell me was what I found later in his progress report he mailed to us. In the report the doctor wrote,
Although there are behaviors suggestive of Pervasive Developmental Disorder (PDD), Aiden does not have enough features for a definitive diagnosis.
If the doctor had told me this to my face at the office visit, I would have kept an eye on certain symptoms that would later surface through Aiden’s progress!
Aiden\'s therapy sessions in the beginning were once a week of speech & occupational therapy. When our first speech therapist Anne noticed how delayed Aiden was, she increased his speech sessions to twice a week. Anne was with us for only 3 months. Then she notified us that she will be leaving our family for a new job opportunity, and was working on finding another speech therapist to take her place. Little did we know she would find the perfect speech therapist for Aiden. That is when we welcomed Amy Kurzawa into our family!
Amy was young in her mid 20s who has a Master\'s degree, and is an SLP (Speech Language Pathologist).
Amy and I hit it off immediately. She LOVED Aiden and Aiden LOVED her! When Amy took over speech sessions she was tough in the beginning. Aiden hated it in the beginning, but he later realized its either Amy\'s way or no way at all. Amy would sit in a chair in front of Aiden, as he sat in his high chair during their 1 hour speech sessions.
When Aiden started his sessions with Amy he was still non-verbal. In a matter of 6 months with Amy, he went from 0 to 146 words. His progress was so fast; it was like a light bulb went off in his brain!
Amy was so proud of Aiden. Their date twice a week was what our family looked forward to. The more Amy worked with Aiden, the more he progressed.
At age 3 is when Early Intervention wean the kids out of their program. They normally have the school district you live in take over the child\'s case. I was not too comfortable having Aiden in school yet, so I opted out of having Aiden going to school (big mistake on my part, but then again I\'ve never done this before). I was planning on homeschooling Aiden just like I was homeschooled.
Right before Aiden was transitioned out of Early Intervention, I mentioned to Amy how Aiden has made such great progress, but how he was having difficulty putting words together. We would always have to keep prompting him. He knew how to say and use the words but constantly needed prompting and reminders. It seemed like the progress Aiden had made, was now at a stand still. Amy suggested we take him to another pediatric neurologist to see what the doctor recommends.
Well day 1 of homeschooling came for Aiden, which started and ended quickly. That first day of homeschooling Aiden is when I realized that his developmental issue were beyond me... he needed some serious help! And I was not the person to bring that help. So I took Amy\'s advice.
We took Aiden to a different pediatric neurologist, along with all the therapists entire summary of where Aiden was and where he is now in his development. The doctor came in and examined Aiden, read the therapists reports, as well as got our input of what Aiden can and cannot do. After that the doctor then told us something that I will never forget.
Your son has something called Pervasive Developmental Disorder (PDD).”
I was confused, I had no idea what that diagnosis was. The doctor then looked at us and said,
“PDD refers to a group of disorders characterized by delays in development of socialization and communication skills. In other words, it’s the diagnosis we use for someone who has some but not all characteristics of autism or who has mild symptoms.”
Again, my look said it all, what the heck is that?
Basically if you are given the Aspergers diagnosis or PDD diagnosis, doctors considerate it all to be the Autism Spectrum Disorder. The Autism spectrum is a big scale ranging from mild to sever. The doctor told us Aiden was on the mild side of the spectrum, and would most likely out grow this diagnosis if he were in the right program, and receiving therapies.
After hearing that diagnosis I knew my role as a mother was now different. I wasn\'t just an average regular mom.
I was now a mother to a special needs child.
The doctor gave us some paper work and recommended that Aiden be placed in our school district. He recommended that Aiden be placed in an ABA (Applied Behavioral Analysis) class setting, as well as getting continued speech and occupational therapy.
After all the evaluations through our school district, Aiden was placed in an all day ABA class setting. He would still get speech therapy twice a week & occupational therapy once a week.
January 2014, my 3 yr old Aiden attended his first day of public school. I was of course nervous. I did not think I would be sending off my baby to school at 3 yrs. old! This was supposed to happen in Kindergarten, not now! This was a new experience for Aiden, and for us as parents!
Aiden walked into his school holding his new teacher’s hand. As he walked down the hall to his classroom and turned to look at me, I fought to hold the tears back. My baby, who has had a rough journey so far, walked into school not knowing what kind of setting he was going to be a part of. All I prayed was for God to be with us through this new season.
All sorts of thoughts surrounded my mind.
What if he gets lost? What if his new teacher is short-tempered? What if he starts crying for me during the day? What if this whole new experience will traumatize him?
You name it I thought of it. But Aiden fell in love with going to school. Knowing my son looked forward to attending school everyday gave me peace of mind that he is not only progressing, but his teachers are making a strong impact in his life.
Aiden did very well once we put him in school. He finished the school year on a very high note. When Aiden started the 2014-2015 school year, Aiden\'s case manager transitioned him out of his all day ABA setting into a 2.5-hour self-contained class setting. Going from an all day class to a 2.5-hour class brought back Aiden’s hyperactivity. And I was not happy with the transition.
I soon then filed a mediation meeting with the superintendent of the board of education in my school district. Because I felt Aiden\'s case manager was not looking out for him or his development, or taking my concerns to heart. Manny and I at the mediation meeting stated how the 2.5-hour class is not long enough, and how Aiden needed to be placed back in his previous class where he belonged.
Apparently, Aiden had made such great progress that he no longer qualified to stay in his previous class. So after much deliberation, the superintendent agreed on these terms.
Aiden would continue to stay in his 2.5-hour self-contained morning class, come home for lunch, and would attend another 2.5-hour afternoon general ed class.
The superintendent having a background in special education, assured us that having Aiden in a general ed class will most likely help Aiden progress. As parents we agreed because that was the best solution for Aiden getting a full day of school. But also, this district was lucky I lived around the corner from the school to do all this back and forth, picking up & dropping off nonsense.
So from December to June of 2015, Aiden attended both special ed and general ed Pre-K classes. Aiden graduated from both self-contained and general ed Pre-K classes. He transitioned out of special ed to general ed, and qualified to be placed in a general ed kindergarten class for the 2015-2016 school year.
Because of Aiden’s IEP (Individualized Education Program) and because of his diagnosis, Aiden still qualifies for special ed services (getting continued speech & occupational therapy).
When Aiden started kindergarten in September 2015, Aiden did have a bit of a tough beginning. A general ed kindergarten class is a lot more kids, which means a lot more distractions, stimulation, and challenges for Aiden. Despite the difficult time for him adjusting to his new class, Aiden loved learning. He loved how he was able to read and write his sight words, letters, and numbers. Since Aiden has learned how to write, this kid cannot stop writing! He loves to write anything and everything!
I am so proud and beyond blessed to have a child make such great progress in his journey.
Though we are still not out of the woods yet, Aiden still has his difficulties listening and obeying. So to help in that area, we enrolled Aiden in Karate! I love how in his Karate class, they know how to handle children with special needs, like Aiden. They do not tolerate certain behaviors, they’re strict, and they run a tight, well-respected, and controlled karate class.
Since being there, Aiden learned to love karate. We enrolled Aiden in Karate so he can learn to control his urges and random behaviors. The black belts and other students did a fantastic job, teach, guiding, and helping Aiden.
Because of Aiden’s diagnosis, we still have to see the pediatric neurologist every 4 to 6 months.
At our last visit, the doctor was so happy and pleased to hear of Aiden’s progress. He is amazed at how far he has come in such a short amount of time.
The doctor told me that he already sees Aiden out growing the PDD/Autism spectrum. Though Aiden is not totally cleared of being off the spectrum, the doctor does see Aiden coming out of this as a winner.
After the doctor told me that, on the drive home I couldn’t help but cry and thank God for giving me this child. I thanked God for the progress that has been made in Aiden’s life, and for the lessons that I have learned in this hard journey. I know that this is all part of Aiden’s testimony. And I am starting to see how God is using him already.
Aiden clearly has and demonstrates PDD like behavior. A family friend of ours who has worked with special needs kids, observed Aiden\'s reports from the school district, and told us Aiden is NOT Autistic. If he had Autism he would keep to himself and show other signs & behaviors of what a child with Autism would do.
Doctors say Autism, because it\'s easier for them, and so many other diagnosis & characteristics go with the Autism Spectrum Disorder. That\'s why they say the Autism Spectrum is a wide spectrum from mild to sever.
I don\'t care. They can call my son Autistic or not, but all I know is my son is a gift. And my job is to make sure he keeps progressing.
Aiden has a gift of picking up senses if there is a toddler who is different like him. Whether it’s speech delay, sensory, Autism, he can tell there is something different about that child. He gravitates to them!
I’ve seen Aiden play with two 2 yr old children in our church who both happened to be non-verbal. Seeing Aiden calm, play, interact, and talk with these children just amazed me of how awesome my son is.
Even though at home Aiden does not like to share his own toys with his younger brother Nolan, I saw how Aiden did not mind having toys taken away from him by those non-verbal children. On the way home, after he had played with those kids, Aiden kept asking to go back and play with them. He said he had so much fun playing with them and making them laugh.
Oh my word! I love this kid! He amazes me everyday!
Aiden is the smartest, kindest, most generous kid I have ever met.
He is super smart when it comes to learning and processing certain scenarios. He loves to read! He is currently reading 6 to 7 books a week. He\'s the most forgiving person I have ever met. It doesn\'t matter if you screw Aiden over, as long as you apologize, he will forgive you and go back to being friends with you no matter what. And he is very generous & thoughtful. Aiden saw how one of his classmates had no lunch. So Aiden gave his lunch bag to his friend so his friend was able to eat, and Aiden proceeded to buy himself lunch from the cafeteria.
I don\'t know what kid at 6 yrs. old would be generous enough to give up his own lunch for his friend? But I do know which 6 yr. old would, and that would be my Aiden!
If you are a parent of a child with special needs or know families who are on that journey, send them here to read our story.
I want our story & journey to be an encouragement to all families who are going through this!
Though every child has his/her own symptoms & delays, the pace of the progress varies in each child! Regression is a word no parent ever wants to hear!
Thankfully in Aiden’s case I have never heard the word regression.
I have worked so hard as a mom to stay on top of Aiden’s IEP and what changes the school case manager was making.
If I did not like what she was suggesting I made sure I fought or had the child study team do re-evaluations. As a parent it is our job to stay on top of our children’s progress.
We are their advocates!
As parents of a child with special needs, you need to forget what others are telling you unless they have been in your shoes before! People who do not have a background in special education or do not have special needs kids, are very quick to give their opinion & tell you what to do.
I can care less who is looking at me or judging me when it comes to me parenting both my children. Unless you live with me and see what happens behind closed doors you have no right to tell me how to handle or discipline my children!
I’ve made it my mission to encourage and give as much information possible to all mothers that I come across that are on the special needs journey.
Just know that God knew you could handle your child like this. Your child being special needs is not a curse, but a learning experience for you both! Just know that you can do this! Yes, parenting a special needs child will challenge your parenting skills like never before. But later as the years go by, you will see everything that you have done to help your child progress, is all worth it!
Try to have a support system to talk to. As moms we need to talk! Especially with what we are going through with our kids! Whether it is through reading other blogs, online support groups, or a community support groups. Find some mothers out there that are willing to help you, listen to you, and are going through something similar as you.
I am here for you! Do not hesitate to ask me questions. Or if you need encouragement, just send me a comment or message.
There\'s no way I would have been able to get through this phase of life without the support of our families. I am so grateful both sides of our family support us and consider what we go through with Aiden. It has made day trips and vacations with them go so much smoother & easier.
Below are websites that I have followed through out our journey with PDD/Autism. These sites are so informative especially with new ideas and ways to help your child.
For Example, I started using Young Living Essential Oils when Aiden was 3 years old. I have researched and used some of their oils recipes they recommend for Autism. And I have seen a difference in Aiden\'s moods.
I hope these resources help you and your family, just as they have helped mine.
I also have videos of Aiden\'s progress with his speech. Just to show you & encourage you with the progress he has made.
Have faith! Your child will progress, just as mine has.
I ask that you please share this blog with anyone you know who is a special needs mom, and needs encouragement! We are all on this journey together!
And I am here for you!