It was the summer of 2010 and me and my two best online friends, Kathryn and Sara were expecting our little boys. We had met on Christian Military Wives and were all due within a 2 month time-span. We shared pregnancy photos and excitement at the birth of our precious boys. We had a lot in common – our boys, difficult birth experiences, and trouble breastfeeding.
But, in time, it became apparent that God had different paths for us to walk.
As our boys now approach their 3rd birthdays, we still have a lot in common. But now Kathryn and Sara spend their days taking their boys (who have both been diagnosed with autism spectrum disorders) to special therapies so that they can learn to talk and eat–while I take my son to play dates, listen to him sing his ABCs, and watch him wolf down food like it’s nothing.
Over the last few years we have all struggled with this thing called motherhood, but Kathryn and Sara have also had to adjust to the life of a “special needs mom.”
As their friend, it’s been hard to know how to help. What to say, what not to say. How to encourage them. How to embrace the gift that God has given me and rejoice in my healthy, neuro-typical son while not undermining the struggles that they go through on a daily basis.
I know I haven’t been a perfect friend. And I’ve probably made a lot of mistakes. But they are gracious and our friendships have endured even the worst of my blunders.
This post is a compilation of advice that I’ve received from them, posts on their blogs, and some things I’ve learned the hard way. While some of it is autism/sensory processing disorder specific (because that is what I have been exposed to the most), I hope that this will encourage women who know special needs moms of all varieties.
1. Express that you care – that you care about her as a person, as a fellow mom who is just like you. That you care about her child and the special needs that her child has. Ask her regularly how she is doing, and in a way that she knows that you really mean it. Listen and let her know that it’s okay for her to vent, even if you don’t fully understand what she is going through.
2. Don’t forget that she’s a mom and a woman – just like you are. While she may sound like she’s speaking an alien language sometimes and spend her days running between doctors offices and therapy appointments, she still has the whole struggle of normal motherhood going on – the diapers, the laundry, the grocery shopping, the taking care of her husband. Treat her like a normal mom, not some freak of nature.
3. Include her AND her special needs child. Invite them to playdates and birthday parties. Take her out for coffee and invite her to your girls’ outings. Sit with them at church. I know it may be awkward. You might not know what to do or say. Your children may not know how to act around her child. (And her child may not know how to act around yours.) You may have to sit down with your children and talk to them about her child’s special needs. Warn them about potential behaviors that they might expect or might consider to be mean. (Children with autism or sensory disorders may hit or push because they are seeking stimulation, not because they are being mean.)
It might be stressful. You and your children will probably make “mistakes” when interacting with her special-needs child. But you will never learn how to act around them unless you try. And I promise you, that taking the time to do so will mean so much to them that they will be much more understanding of your mistakes than if you had kept your distance.
4. Ask her questions. You will probably never fully understand her life, but at least try to show an interest in what she goes through on a daily basis. Try to understand her child’s diagnosis or special need, and what it means for their lifestyle. You may ask a dumb question, but, again, trying to understand and floundering a little will probably mean more to her than if you had pretended that there were no special needs or kept your distance.
5. Learn her language. She might speak in acronyms like IEP, ABA, ASD, and SPD. Ask her what they mean – or Google them (like I just had to do with ABA because I forgot what it meant…)
You don’t have to be a special needs mom to learn about special needs.
6. Keep advice to yourself. This is probably where people make some of the most hurtful comments to a special-needs mom. By offering unwarranted and sometimes uneducated or simply irrelevant advice. Most of these moms have spent HOURS if not days of their life researching their child’s diagnosis and treatment options. So the chances of you coming up with some new thing they have never heard of and that actually might work for their child is pretty slim. (I know…I know…your pastor’s wife’s cousin’s son has autism and is on a gluten free diet and it’s working for him. But that’s him, not your friends son. She’s probably aware of that option, has looked into it, has talked it over with her doctors, and decided to take another route. Now if you bring it up, she feels like she has to explain away why it’s not something she is doing and may feel badly when you don’t understand.)
Trust that she is the best mom for her special needs child that she can be and has her child’s best interests in mind – and she just might know a thing or two more about her child than you do.
7. Don’t invalidate or downplay her hardship by saying “oh, my child does that too.”Maybe your child does throw a fit at dinner or hate to put on shoes or wear bandaids. Kathryn says this about the subject: “…most of the time anything that might be normal for someone is else is far far worse for an autistic child. When people say stuff like that I guess I feel like they don’t think my child is autistic or that my claims are valid.” Remember that while her frustration of the day (whether it’s giving her special-needs child a haircut or watching him have a melt-down at Chick Fil A) may be similar to what you have gone through with your child, it is one thing in a whole lineup of difficulties that go along with having a special-needs child. Therefore, it is not the same.
8. Refuse to compare your child’s development to hers. When she announces that her child finally said a sentence, or went potty, or started walking – and your child did it 10 months ago – keep. your. mouth. shut. and simply rejoice with her. These things were huge deals for you when they happened, but they are even bigger deals to moms of a special needs child! Their child has overcome huge obstacles to get to that point that your child never had to overcome.
Simply “Rejoice with them that do rejoice, and weep with them that weep.”
9. Offer tangible help. Offer to babysit and ask the questions or get the education needed to know how to babysit her child. (Sara has trouble finding a sitter because most people don’t know how to use a feeding tube and won’t take the time to learn.) Offer to take her a meal. Come over and help her clean or catch up on laundry. Pick her up some groceries.
This sort of help is hard if you are separated from your friend by a distance. Consider sending your long-distance special needs mom friend a care package with her favorite candy, a good book, maybe a cute outfit for her special-needs child, gift cards, or money. Often families of a special needs child are under a huge financial strain as they try to provide the best care and therapies for their child that they can. They don’t have a lot left over for extras like Starbucks, eating out, or new clothes.
10. Pray for her and her child. Pray for healing for her child or improvement in her child’s functions and behavior. Pray that God would bring friends into her life who understand her life so that she wouldn’t be lonely. Pray for her marriage as it is probably going through far more strain that you could ever know. Pray for her to have strength and grace to get through each long, exhausting, difficult day.
“What I want other Moms of normal kids to know, more than anything, is this: that yes, it is HARD, hard hard, when your kid is different, and to pretend it is not hard is a lie. But, at the same time, that we WANT to be included, involved, accepted, and to make life as normal as possible for our children, even if we’re not sure ourselves how the day is going to go!”
– Sara Fleming –
So what about you? Are you a special needs mom? What else would you add to this list? Or maybe you are like me, not a special needs mom, but you care about someone who is? What have you learned and how do you encourage your friends who are special needs moms? Sound off in the comments!