Being a Mom of a Special Needs Child

I have so very many things to say about raising special needs children and I very nearly stopped writing about it here. Until a friend of mine from childhood sent me a note about her own son and made me realize that Special Needs Parenting needs as much support as it can get. In parenting Morgan, I have very much respected him enough to ask permission to write about him and he has, kindly, obliged me that honor. I tell him, “You know, people say that they are grateful to hear your stories because there are moms and dads with kids like you and we all need a community.” In his typical response, he says, “Yeah. Ok. Fine.” and then I normally ramble on, explaining myself ad naseum until he has to tell me to knock it off because he gets it. He just doesn’t need to hear about it all the time.

While being his mom has provided challenges, I will admit that my parenting has changed drastically with regard to him and the other kids. My eldest, Mallory, was an easy child who breezed through school and only spent one year on My List. 7th grade girls are just absolutely horrid to their moms. She perfected a look that told me I was the Dumbest Person Ever On The Planet and I just recently forgave her for that mind-numbing 7th grade year when she turned 26. That’s how long it took me to get over her nastiness. Other than that, she was quite delightful. By the time Morgan came along, I thought I had this parenting thing wrapped up in the bag.

I am a fantastic mother. My children all mind me and respect my authority and do what I say.

It was as if the Universe was chuckling at my hubris and sent Morgan my way. It was a good thing, too, because I was also getting set in my ways about teaching and had begun to stall in my pedagogy. It was just the time, about five years into teaching, when I had all my lesson plans and assignments set and when my own child began to struggle in school I was forced to see it from the Other Side again. After all, I was a mother before I was ever a teacher and had foolishly found myself in a comfort zone when Morgan forced me out of it.

Ah, young stupid parenting.

There are some things I’ve learned about parenting a special needs child and, if you let me, I’d like to pass along some of this hard-earned wisdom to parents who might be tearing their hair out and wondering just where they went wrong. (You’ll notice I change pronouns between “I” and “We” because Morgan lives in two households and things are different in each. Forgive me for jumping around like that, but it’s a truer experience for him when I say that “I” don’t allow violent video games, but I know his father allows some of them at his house. I’m only in charge of what goes on in mine.)

1. Get a support system in place at home and at school. School is a natural place to seek out a support system and Morgan has an IEP team who knows him very well these last 4 years of high school. I take the same approach at home and there is much discussion around things we’ll do where he’s concerned. For example, at the dinner table when it’s just me and Morgan and The Cuban, we have learned how to navigate talking about our days and sharing stories. When his siblings come over we know it will be more difficult for Morgan to enter the conversations so The Cuban and I help plant stories with him that he can talk about and feel confident in doing so. A lot of times, I look to the goals his school has set for him and work on them at home, too. For instance, one of his goals is reading meaningful text and responding to it, so we might all read the same article and use it for a discussion topic around the dinner table. He can work on communication skills at the same time, too.

2. Give some things up. When I realized that Morgan would never want to attend a Homecoming dance or prom or even any high school sporting event, I was sad for him on things he might miss. The thing with kids with social anxieties like him, though, is that they don’t miss them. He would rather watch Anime, listen to music, or play video games at home with us (nothing violent at my house!). As a mom, I had to be okay with him missing out on those things and help create other social events where I could coach him through them. We have more dinner parties at our home (with our understanding, well-informed friends) and take him out to plays and events where we can guide him. Sure, I gave up seeing my son in a tuxedo for a dance and going on a special date, but that stuff will come eventually. Morgan also doesn’t drive yet and he’s almost 18, so I organize my own errands around driving him to work. With that, I’ve given up the autonomy he’d had with driving his own car, but every parental unit in Morgan’s life agrees that he’s just not very good at that yet, so we all support him there. Even his brother who sometimes picks him up or drops him off at work.

3. Help your child secure a job that will support him or her. We got very lucky in that a teacher friend overheard me talking about Morgan’s social issues and she mentioned this to her husband who manages a retail store. Earlier this year, Morgan got the job and I sent along a list of his behaviors that we’re working on at home. It’s been a fantastic experience for him and he’s doing great! I think schools do a tremendous job with kids like him because he comes armed with an IEP, but work isn’t like that. If he had gone out and gotten the job on his own he might have been fired by now for being “difficult”, but his manager plays to his strengths and I’m so grateful for that. In fact, since he does the work schedules, he often puts himself on the schedule when Morgan is working. (I could seriously kiss that man. He’s been great for my son.)

4. Be honest with family and friends about your struggles. When my family and friends didn’t know about Morgan’s diagnosis, we just chalked it up to having ADHD, but that definition is an umbrella that is too broad. That’s why we pressed the issue until we found something which we could actually attack as a family and get him some help. Usually, I’d pass it off as, “This is my kid. He’s a little weird. Forgive him.” but have changed that narrative to let people know how to handle him. I’ve seen my friends get more comfortable with him and wave off his sometimes inappropriate social behavior more often now that they know about his EFD. I even told them how he doesn’t like to be touched and it’s helped for people to know.

5. Be a different mom/dad/caregiver to your Special Needs Child. It helped me get over some Mom Guilt when I realized that I couldn’t parent Morgan the same way I had the other children, but I certainly needed that permission. The older kids noticed and pointed out to me that if they had done such-and-such then they would have had a more severe consequence. I think that when you are training children and they still don’t get it, you have to take another route. For me, I found myself repeating rules about our family to Morgan and got frustrated when he refused to follow them. I also took on cleaning his room in a way that helped him organize and I had never done that for my children prior to that. Every wall is bare and he can only have a certain number of clothes because he gets overwhelmed at the sheer volume of what he has. That helps him set his day better and I don’t regret the extra cleaning I have had to take on because of it.

Read more from Kelly at her personal blog, Mocha Momma

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More of Kelly on Mocha Momma Has Something To Say: What Exactly Does My Child Have? and Executive Dysfunction: Take Two

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Article Posted 3 years Ago
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