A special needs mom is a mom who has a child or children with a unique need that requires tremendous patience and attention. It can be a mental health condition, a developmental difference, or physical impairment or medical condition. The mother may have to spend additional time with that child going to doctor’s visits or meeting with specialists because of the child’s condition. Things may be left undone at home or at work because the mom has to drop everything to take care of this child when something comes up. What you must do when you have a special needs child is not for the faint of heart and tends to be beyond the line of duty of what most mothers must do for children who are not special needs.

Being a special needs mom requires a certain amount of mental energy. You have to always be present, able, and capable of tackling the challenges that come with having a child/children with special needs. Children are part of so many systems (extended family system, the school system, the healthcare system, etc.) and managing and navigating all these systems can be tiring. Therefore, it is crucial that we pay special attention to when we are drained. There is no way we can properly function in these systems if we are. As a special needs mom, you are an advocate, a warrior, an essential support to your child and it is vital that you don’t get overwhelmed so you can stay on top of things. So be sure that you pour into yourselves and find time to de-stress when you can.

Do you have a community? It’s important to have a community or village. We become so hyper-focused on our children and stressed out with what we must pour into them, that we forget about our own needs. A community could result from connecting with a support group for parents or caregivers with a child like your’s. Community could be your local church or maybe a group of girlfriends you enjoy hanging out with. Community is anyone or anything that helps support YOU in managing the additional stress of having a child with special needs. But it’s not just important to have a community but to reach out to them when you are feeling overwhelmed, frustrated, and need to vent and release some of your negative energy. It’s your opportunity to let loose when you are so used to holding so much together.

Another thing to consider with being a special needs mom is that you don’t feel guilty when you take time to yourself. Time to yourself is valuable to recharge and get your mind right. If you have no one to watch your kid due to their specific needs, then find a way to create time for yourself when you are at home with your child. This could be sitting in the car a little while before you walk through the front door, taking an extra long bath or shower, or just sitting on the toilet a little longer than you need to. It’s whatever moment of peace you can steal for yourself while remaining present for your child if they need you.

Of course, with this being Mental Health Awareness Month, it would be remised for me not to recommend therapy. Everyone can benefit from therapy, not just those with chronic or acute mental health conditions. It is an opportunity to gain awareness about yourself and how you can evolve into something better for yourself and your child. Going to a therapist does not always mean your mentally ill, it can mean you are ‘mentally challenged.’ Sometimes you need a sounding board to talk about your frustrations with all the burdens you carry, lack of support you receive, or perhaps discussing the grief you have from not having the child you thought you would have. Therapy can give you the closure that you are longing for regarding any unresolved issues you are dealing with.

There is so much more I could say but what I want to leave you with is really take care of you. Do what you need to do to recharge and recommit to facing the daily challenges that come with being a special needs parent. Don’t just put yourself last. Putting yourself last means that you are probably not going to take care of yourself and then unfortunately fail to take better care of others. Find respite however you can and remember that treating yourself good will indirectly affect your child’s welfare and well-being.

Love and light,

Kira

I felt I needed to do a part two so I can further discuss what I am still learning on my journey being a parent to an autistic child.

Autistic folks take things very literally. Like when I want Trey to speak louder, and I tell him to “open his mouth” to project his voice when he is reading; he will literally just open his mouth. He also suffers with echolalia, which is where the child repeats things people say and has a hard time with two-way communication. Trey will often answer a question with that same question or just repeat back a response you gave him. Trey struggles to give authentic answers and we often have to do what I call scripting, which is me providing Trey with examples of appropriate responses to the questions. I’ve been practicing this with Trey for a few months now and am finally seeing improvement in his ability to come up with spontaneous responses.

Trey also struggles with following multi-step directions. I have to be sure to keep my sentences short and only give him one direction at a time. Information overload is a thing that autistic children or adults struggle with and it’s important that we accommodate this challenge by slowing down, simplifying things, and making it easier for them to understand. Repetition may also be part of what you do when talking to someone with autism, which comes naturally for me anyway since I’m a mom. I recognize that I must exercise patience with Trey when it comes to completing tasks. He is not going to get it just based on context clues. It’s very laborious “spoon-feeding” words and acceptable responses to him but the autistic brain works differently and that’s a fact. I cannot expect him to just understand things the way me, my husband, and my other son do because we are neurotypical. Trey struggles with receptive and expressive language that just comes naturally to us. Every day he struggles a little less and the progress he makes is what I hold onto.

You also must be an advocate for your child/children with autism. NO ONE can do it like you can. From my experience, the school system will only do as little as you allow them to. Meaning that if you want them to do more, you have to be in constant communication with them. I speak to Trey’s teacher and speech therapist weekly. For me, those are the two most important professional supports in his life right now and I have to make sure that they have Trey’s best interest at heart and that they are working together. We communicate over email, and I have met with them at school. Don’t just wait to meet or communicate with these professional supports at the annual IEP meeting. Your children are in school 185 days a year (if they are in NC) and you want your intentions made clear to your child’s IEP team all 185 days. You need to maximize as many of those days as possible to help your child reach his or her potential.

I cannot speak about anyone else’s experience, but I’ve learned a thing or two from my own and I truly believe that autism does get better with time. As the child grows and matures, they overcome old challenges but then are faced with new ones. As an autism mom, I feel more confident in confronting those new challenges. I do admit that I come from a place of privilege in that I’m educated, financially secure, and have the support of a two-parent household. This of course helps A LOT. However, I do think that anyone is capable of being a fierce advocate for their autistic child and being sure that they get their child’s needs met. It’s always possible if you put your mind to it and you have the potential to remove any barriers your child faces.  

I could go on and on, but I have kept you long enough and I hope that you find value in my story and experience. I am only an email away so don’t hesitate to reach out if you have any questions. We are all at a different part of our journey so if I’m further along than you, reach out for resources and know that I’m always willing to help. I am also open to resources from those who are dealing with the challenges of having an autistic teen like mine.

Be good to yourself and others and take care!

I know it’s been a while. I haven’t been in the mood to blog recently nor had the time but knew it was important to get one in during Autism Awareness month. Being an autism mom is a BIG part of my identity and I didn’t think it would be right to go all month without blogging once. So, get ready for a transparent post about my experience thus far as an autism mom with 11 years under my belt.

It has been a journey, to say the least…every time I feel like I got a handle on it, something just comes out of left field and takes me through a loop. Let’s start off with the good. Trey has come a loooooooooooong way! I mean a really long way. He is talking which he didn’t until he was 6. He can do some math, read, and can type or write full sentences. However, he is still socially and developmentally delayed. Trey is 11 but acts more like 6. He is VERY immature and doesn’t really do two way-communication and does inappropriate things like laughing at serious situations, humping, and playing with his privates in public. Yes, he is now entering puberty, so these things are going to come up. Just this past Friday, I got a note from the teacher about this type of behavior in the classroom. We (my husband and I) decided that due to the severity of his actions, we would put him on punishment this weekend which consisted of no electronics. Devices are his thing, so he has been forced to do things he normally doesn’t such as play with his keyboard or read books. We did this to reinforce the lesson that these types of behaviors are not appropriate or acceptable and we reiterate to him every chance we get why he can’t use his phone or laptop. Autism requires lots of repetition but in short phrases or sentences so that they can process and retain what is being said. Trey is well aware about why he is on punishment as evidenced by him hiding his face or turning away in shame when we address his behavior. Despite Trey being autistic, he does know the difference between right and wrong.

Trey, although fully aware of the wrongness of his actions, has a tough time making the right choice when we are not around. We have decided that to address this issue, we are going to give him more freedom. You might be feeling that this should be the opposite of what we should do. Let me explain further. Trey is coming of age. He is now less than 7 years from 18 and I will probably seek guardianship before he becomes an adult. However, Trey needs to learn how to independently make good choices for himself without us always telling him what to do. We need to allow him the opportunity to safely make the wrong choice with us watching him deal with the consequences from a distance. Now of course we wouldn’t let him do anything dangerous but here is our plan: starting this summer, we are going to allow him to take on more responsibility such as preparing his own food, washing his clothes, and putting them away, taking care of his hygiene, etc. Basically, his daily living skills. If he decides to do something playful like put too much seasoning in his food to be funny or not wash himself correctly, he will have to deal with what you call natural consequences. When met with natural consequences for his poor choices, he will hopefully learn to make different decisions. I feel that by allowing him to have some independence, we are preparing him for adulthood. We don’t want Trey to be too dependent on us or his brother as an adult because if we were to pass away unexpectedly, we would not want him to be a burden to his little brother. We also want him to live a full life that involves him pursuing his own passion and independently doing some things for himself. A sense of autonomy is what gives people a feeling of accomplishment and general life satisfaction. We want Trey to have the opportunity to be all he can be with us safely watching him grow and develop into that from a distance.

I’m not a young parent and neither is my husband. There will come a time when we are unable to care for Trey because of our old age and deteriorating health. Unless you come from a big and supportive family that can step in when you can’t, you have to give your autistic child a chance and opportunity to become the person they are meant to be, which may not be what you had imagined. Now of course there are varying degrees of autism so if they are severely autistic, you may not be able to give much freedom. But I believe that to some degree or level, all children despite their disability, can learn to achieve something on their own without their parents or caregiver always hovering over them. Imagine if you spent your whole life with a hovering parent or caregiver and how nerve wracking and disabling that would be because you never felt confident to make a decision for yourself. Everyone deserves the opportunity to make a choice, even if it is as small as picking what they want to eat off a menu or deciding what shirt they want to wear that day.

Anyway, I hope you found something informative or enlightening about this blog. I am big on takeaways so comment below about what you took away from this post. If there is an area that you want me to cover that I did not, comment below. I am open to feedback and serving my audience the best way I can.

Take good care!

Kira