Hard Questions/ Broken System

12 years ago, the last thing anyone thought about when they found out they were pregnant, was the possibility of having an Autistic child. Now, it is not only common place, it is expected (in some form or another) in 1 out of every 8 children. I am not going to get in to what causes Autism or post my personal opinions on vaccinations, but I do want to mention the side of raising an Autistic child that no one talks about. We all see the inspirational stories of a special needs individual transcending expectations, but rarely does anyone talk about how many tears were shed behind the scenes to get them to that point.

As a single mom, I have had more than my share of struggles over the past decade. We all know how much work it is to raise kids, but take out the added benefit of close family or a significant other, and it can “run you ragged”. I have dealt with a failed marriage, living in a domestic violence shelter with my THREE kids, trying to maintain some semblance of a social life, working, paying bills, getting my Bachelor’s, going to church, getting the kids to all their events, and I am now dealing with a couple rare auto immune disorders life decided to gift me with, all….on….my….own….

Now, add a special needs child in to the mix and you have all the ingredients for chaos, an indefinite lack of sleep, and a level of stress that cannot really be compared to anything else. Moral of this story? It’s been hard. So incredibly hard.

I noticed something was off about Jayden when he was a toddler, but trying to get anyone to take you seriously and not consider his behavior “typical for a 3 year old”, was virtually impossible. I don’t blame the doctors honestly. I mean, when a first time mom comes in and talks about excessive tantrums and some abnormal behaviors, they’re going to look at you like you’re being a hypochondriac. It’s frustrating, but in their shoes I may have done the same. It wasn’t until Jayden was 6 years old that someone finally started listening.

Jayden’s official diagnosis was such a relief to me. While others offered condolences, I saw it as finality. I could start getting my child the help he needed… or so I thought. It didn’t take long before I started running in to issues where he wasn’t considered “Autistic enough” or having to wait several years for a spot to open up in a program. The only thing that was immediately available, was trial and error with medications.

The past six years of my life have been spent in specialist’s offices, administering medications, attending IEP meetings, GAPS diets, self help books, and trying to find care givers that understood how to handle my child when he was acting out at daycare/school. You name the remedy, I have tried it, and so far my child is only getting worse.

When you have a toddler that hits you it hurts, but put that mentality in a child that is that same height and weight as you, and I can assure you, the punches are much more painful. Now that calls to the police are becoming more frequent, we are finally on the radar. Now I am on more waiting lists, trying more medications, and just praying I can get through this next waiting period without anymore bruises or anything else in my home broken.

Everyone has advice to give, but no one truly knows what it is like to live this way, and how broken the system is for special needs kids until they’re dealing with it head on. It is truly a nightmare.

I absolutely love my child. That will never be in question, but there comes a time when I start having to think about my own physical safety and the safety of my other children. How do I accept the fact that I am just not enough to help my child? How do I deal with knowing that my son will have to go live somewhere else, with strangers and in a strange bed? How can I protect him from bullies or advocate for him when he is not in my home? Is he going to be cold at night? Will he get to eat his favorite foods? How often will I be able to see him? Will I have to sign over parental rights?

These are the questions that are currently in my head and I am exhausted. It has been such a battle; with my child, with the schools, and with the government. To know that no matter what steps I have taken over the past decade I still failed, is hard to accept. That’s not who I am. I don’t fail. I am a fighter, and I find solutions to problems no matter what I am facing, but this is the one situation that is definitely humbling me.

I am so grateful for the people that God has currently placed in my life during this time. He knew I was going to need the extra support while I dealt with this escalating situation and whatever outcome arises. I know I am on the right path and I will fight to the very end for my baby, but I truly feel like the next six months will ultimately determine my child’s fate. So please….. pray.

6 thoughts on “Hard Questions/ Broken System

  1. I had no idea Sheena…..but even with a special needs child they have their rewards. Some don’t realize it until after their gone. How they Love you for who you are and been thru each step with them..When your child can’t talk or even you see but feels the Love and support and has a big grin on their face…they know. You can do this! Praying for you and the family that helps you in anyway… Note: had a Nephew with accountable of 6 months but body of a grown boy. All he could do was hear…no site or walk….but was a blessing to my family. He really humbled us and the Love was unconditional. We were there until the end…Music was his source of soothing him he couldn’t tell us what wrong…Bless you! Grace

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  2. I am praying for you and him. I have seen this situation before. A single mom trying to handle a child with a problem, it is hard doing it alone. You have to think about their safety, your safety, and your other children’s safety as well. There is a lot of mixed emotions. I know you love him. And he loves you. Praying God will put the right person in your path soon. There is someone that can help you with Godly wise and knowledge. Love you and here for you.

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