This past Sunday I opened up to a friend at church about the stressful year we have had. It was after several other sisters had asked me if we had moved because they never saw me anymore. The stresses that had seemed so apparent to me had never occurred to these ladies. So, as a result of that experience, I am taking a moment to let you know why you may not be seeing your friends as much after their child is diagnosed with special needs. And I’d like to offer seven suggestions on how to help minister to them.
Special Needs Changes Things
When a child is diagnosed, you probably won’t know it. A lot of parents take some time to process this huge change in their lives. There is an enormous amount of information they will need to absorb, and it is quite overwhelming. They say a child is diagnosed, but I really feel it is a family event. The child has needs, but the whole family will be adjusting for a long time.
For us, we determined that social occasions were highly stressful for the whole family. My special needs son would always throw a fit about having to go. We would expend a huge amount of energy getting him ready and out the door, only to spend the evening apologizing for his bad behavior and hovering over him to prevent a disaster.
Because of this, we began limiting our outings to required family events or blessedly short and very casual occasions. This may have been a mistake, but it was our survival technique since his social skills were so bad. Over time we have gotten him some intensive therapy for his social skills, and they are improving, so we will venture out for more things these days. But that therapy is quite involved and takes a lot of time.
Unfortunately, that has not helped us see people more often. But it will pay off in the long run because my son needs the therapy so badly. He used to have 6 hours of therapy a week. But now he goes to a special school that integrates therapy into the classroom. This program gives him more like 30 hours of therapy a week.
It’s been amazing how much he is progressing! But, again, we haven’t thought to share this information with friends in general. We will eventually get better at it. But when you are ‘in the trenches,’ survival is often more important than information sharing. I probably should get a t-shirt made that says ‘I still love you even though I don’t talk to you’ or something.
This brings me to the things you can do when you feel your friend has disappeared.
1. Send her a text
I know that sounds a little impersonal. But sadly, it seems like every time I get on the phone, my son has a meltdown. I am not sure if it’s the suddenness of the event or if he just hates knowing that I am not there to talk to him. But for me, a text is subtle enough that he isn’t asking who I am talking to and what I am saying. So I can get a lot more info shared without much hassle.
2. Send her an email
Usually when I am at my computer my child knows that this is ‘mom time.’ And since the story about why your friend is missing could be involved, an email is often the best way to share. Then your phone isn’t blowing up with the longest text message story of all time. And your friend will feel remembered and can vent if needed.
3. Arrange to meet, just the two of you
I used to get most of my socializing through playdates. But as time passed and my son’s development wasn’t the same as his peers, those playdates became disaster management sessions. I couldn’t focus on chatting with the other moms. So if I were you and trying to reach out to a friend, I would see if there was a time the two of you could meet alone. It will be harder to arrange than if the kids were in tow, but your friend will be freer to share what is really in her heart.
4. Be flexible
One of the hardest things about special needs parenting is the unpredictable nature of our kids. They could have a really bad day that will mean the evening is spent dodging meltdowns or all plans are thrown out the window because he just needs to ‘be next to you.’ And when you have a special needs kid, you can’t just call anyone over to babysit.
It must be someone with experience with special needs and someone the child is comfortable with. So, if that sitter cancels for any reason, there rarely is much of a backup system available. So you may need to attempt to get together a few times before it actually happens.
5. Know your efforts mean everything
Often, we feel frustrated if we aren’t able to get together as we had planned. But even if your special needs parent friend can’t get away, she will really appreciate that you tried. Being remembered means the world when you are knee deep in stress. You may not hear about it right away but know that your efforts aren’t in vain.
6. Keep trying
This one may seem surprising. But the nature of special needs parenting means we are often trying over and over to get it right. One week may be wonderful, while the next week is awful as we adjust programs and plans to tackle the problem of the moment. So even though I want to reach out to you, I am not able to all the time. But if we run into each other a different day, my life may be a lot calmer. It means the world when people don’t give up.
7. Know you are thought of often
Special needs parenting can be all-encompassing. But in the quiet moments, I often think of my friends and loved ones and wish I could show them I care on a more regular basis. I used to have a goal to have a meaningful conversation every day as I did the PTA thing and participated in school drop off and pick up. Chats with friends during those walks home could take 30 minutes and filled my day with meaning.
But now I don’t see as many people. I drive 40 minutes to the school my son attends and conversations revolve around treatment plans and progress that day. I need to get better at reaching out to others, but just know that if you haven’t been hearing from me it’s not because I don’t think about you.
My mind is often preoccupied and my schedule is often full. But I am finding a lot of fulfillment helping my child overcome as much as he can. And I find joy in the success of friends when I have time for social media. But the in-person interactions have diminished in number.
That doesn’t mean you don’t matter to me. And in time, I will emerge from this period and seek you out again. But in the meantime, if your friend is like me, she will welcome you into her world. And probably apologize for the mess. And be grateful you took the time to reach out.
Abby is capable and caring. She is learning more about Autism and parenthood every day. Having completed training to be an RBT (Registered Behavior Technician) for ABA therapy she is beginning to understand her son. And even though she is the first to admit she makes a lot of mistakes, she is so grateful to be on this journey. She comes from a family with many autistic members. She invites us to join her, as she shares her adventures. She wishes to emphasize that Autism is a difference not a defect. If you or a family member have autism, Abby wants you to know that the challenges can be overcome, and there are blessings in autism. You or your loved one are not sick or broken. Together we will teach the world this new language.