Being the Parent to a Teenager with Special Needs is HARD!

My daughter was diagnosed with a Moderate Intellectual Disability (moderate mental retardation is the past way that it was referred to) at a young age and my world came to a halt. My daughter has a blog and I went through some of the things that I thought about when she was first diagnosed.

In summary, all my dreams went away for her future. I felt as though my child wouldn’t be normal and likely would have to live with me until I died. As a single mother, I didn’t (and still don’t) have a husband/boyfriend that could help me. I did, however, have family and friends that were always there as a listening ear. Although it took my family a while to understand what I was feeling and experiencing, some thinking that a good spanking would knock all her meltdowns out, they got it. They understood it and began to support me in many ways.

My daughter is now 14 and going to high school this next school year. I will not lie to you when I tell you that I am wrought with fear. Maybe it’s because I watch too much true crime or maybe I just know how bad this world is.

I tell people often that God gives kids with special needs to special people that he knows will protect them but even that thought is receding at this point. I always try to tell people that a teenager is hard but, when you have a child with special needs, you add a whole new topping of crazy onto it because, like most teenagers, they don’t understand what is going on and start to do things without thinking. This is a developmental fact for all children. Their brain is not completely developed so it’s just all a mess. Their priorities are different, their world is their friends, etc. I talked about this a bit in one of my other blogs Bipolar and Black but I won’t get too much into it again.

Anyhow, these are a few of my concerns as I have had a lot of time to think lately and I don’t know if that’s a good thing or a bad thing.

Love

Let’s be honest, it’s hard with or without special needs to find love. I have a fear that my daughter will never find love, get married, have a child, etc. These are some of the things I had to have a moratorium for when I found out about her special needs. I had to put a lot of plans to rest and people felt that I was being a pessimist but I really wasn’t. It’s reality.

My daughter of course has feelings and loves people and things. People love her as well. But there are also a number of people in this world that like to take advantage of people like her. I do not want her to be a single mother like me but I also know that I would have to be on hand to help her raise a child if she were to have a child.

When you think of children, then you have to think about sex and birth control. There are so many things you have to think about. When I worked in GYN, there was a mother that had a daughter with an intellectual disability and she wanted to get her sterilized. The child had Medicare and Medicare was like “We’re not covering that.” I’ve also seen a Law and Order: SVU episode where there was a young girl with Down Syndrome that got pregnant. She was molested by someone she worked for (another concern, OMG I have so many) but another guy wanted to help her raise the child and they were doing their best to keep the child and raise it on their own. I think the boy that decided to help also had special needs as well.

Anyhow, the mother wanted to abort the child but the girl didn’t want that. As a mom, you feel that you are the one that needs to make those decisions for your child that doesn’t know better but, the fact is that these children with special needs become adults with special needs. The most a parent can do is advocate for their child and try to make sure that they are prepared. These are hard situations that any parent would a fear of but, when you have a child with special needs that doesn’t know simple things, it gets to weigh on you a little more. And I know the government will help and all but I don’t want that. But it literally is just all a mess. In Law and Order: SVU, the girl got to keep her child and the guy that had molested her had to pay a butt load of money because he owned a bunch of supermarkets. But that’s not the real world. And no one would want their child molested by anyone; rich or poor.

In the end, it’s not about me. I truly just want the best for my daughter and it does stress me out a lot. Darn near every day, I stress about things like this.

Employment and Transportation

Yes, I know that there are a lot of jobs that people with special needs can do. I understand that concept and have been told about many programs through school and even from my therapist who works for The Arc. I honestly am just paranoid. I can get to work or whatever riding public transportation with no problems (I work from home or I drove when I didn’t).

That’s another moratorium I had to have. I had to watch my dream of my daughter learning how to drive go away. I would much rather her drive to work than catch public transportation. We live in the DC Metro Area and there are always shootings, stabbings, fights, etc on buses.

The school has had Metro come and also had us sit on the bus to learn about the things they have in place for people with special needs but man…. I just don’t know. I don’t know about anything. I’m just really paranoid when it comes to her which is why I put her in Taekwondo. I know she can defend herself but why does my mind instantly go to violence if she has to be out? I don’t let her out of my sight. It is something that I am really trying to work on but I don’t trust anyone. I don’t trust the world. I mean, look at it.

DORS

When my daughter started middle school, they told me about DORS and how it could help my daughter when she got into high school. Because of her disability, she will be in high school until she is 21. She will get a certificate of completion and not a diploma. DORS stands for Division of Disability Services. They help people with disabilities learn life skills, find housing and jobs, as well as many other useful services. They help them learn to advocate for themselves as well. They are funded through the state and federal government.

Because I am so paranoid, I went ahead and got in touch with them already (although the high schools work with them as well) and we set up an intake appointment via Zoom.

I will say that my appointment with them really put me at ease. I was told about all the programs and partnerships that they had available. I had no clue about some of the things she told me. One thing that I learned is that they work with many universities and have programs where they can actually go to college (I don’t know about this). One of the places she told me was across from Morgan State. She stated that the classes went from dog training (which Kie said she wanted to do because she helped train Gary) to mechanical work as well as child care. Kie is very good with kids.

She also told me about a college just for people with special needs in Pennsylvania. I found some other resources that were making my heart swell with hope. One is here. The goal is to have the student have the college experience without feeling different. I had had a moratorium for sending my daughter to college a bit too early. That was one of my dreams for her as I didn’t get to go to college and live on campus. I obtained a degree and certifications but I did them all from home.

In addition to this, while they are in high school, they have the ability to have paid internships. My daughter has had a bank account since she was 2 so that’s cool. She can have her own money put directly into her account and she can help pay for all the food she eats.

Housing

As I mentioned, DORS works with other entities such as Melwood and The Arc. My therapist works for The ARC and has been working with me to give my daughter some freedom and teach her how to live on her own. I have actually been doing this a lot more than I was before. My therapist works with adults with disabilities and sometimes (the circle of life) their parents die and the adult is left to figure out life for themselves because their parents did everything for them.

There are so many programs out here for these young adults whose goal is to make the transition from living at home with their parents to being solo easy. It gives me a lot of hope. I am still paranoid BUT I do have a lot more hope now. Schools are really good at trying to help you with all this and I am very grateful to my daughter’s schools from Pre-K all the way to where she is now in the 9th grade. They try to help the parent in so many ways.

The smart thing to do is take advantage of these programs. When I talked to the woman at DORS, she stated that some people feel that their kids don’t need those services and are in denial. You can’t be in denial when it comes to advocating for your child and giving them the tools that they need to survive in this world.

I typed all this to say that I am coming down out of my paranoia. She needs a big dog though if she lives by herself. A HUGE dog like Gary. I don’t want anyone to think they can try to come to her house. I have also taught her that everything is a weapon. Listen, we are a bit hood and folks are off so we gotta get them before they get us.

 

Published by tallgirl79

Blogging about life. Well, my life. As a black, bipolar, mom to a teenager with special needs, well, there is always a story to tell. From my aversion to having a man to my weird experiences while trying to avoid people, it's all there. Being me is.... different but it always makes for good blogs.

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