I know our last few play dates may not have gone as well. I know you’ve seen a bit more of our struggles than I ever hoped anyone would see. It hasn’t been easy lately, but this is our reality, and this is where we are right now.
Our son is amazing and one of the most creative people you will ever meet, but he has special needs, and that means that we as a family, have special needs, too. It is our hope that you will come alongside us in prayer and fellowship as we embrace his differences and the differences in our family as well. Here’s what you need to know about our child with special needs.
1. Please don’t tell us he “seems so normal.”
“Normal” carries such a negative connotation on so many levels. I know you mean well when you say that he seems “fine”. I know you don’t mean to minimize our challenges, and I will most likely overlook it, but this is what will be going through my mind the second I hear those words.
You have no idea. You have no idea how many times I have questioned myself, how many “parenting” books I’ve read and how many approaches we have tried to make the hard parts of this journey easier. You don’t know how often I have been judged for “bad parenting” or how often people stare at me when he doesn’t behave as he “should.” You have no idea how many “conversations” we have had with coaches and extra-curricular teachers and how many activities we have had to withdraw from in order to keep a sense of peace in our home.
No, it doesn’t always make sense why he’s melting down or why he has to have things in order, when minutes before, he seemed just “fine.” I didn’t always understand why transitions were so hard or why certain foods would mean five days of tantrums and crying. I didn’t get it.
But I do now. And I know our boy is hurting.
His brain is on fire, and although certain parts of it function just fine–or even better than most–there are other parts that don’t process sensory input as well, parts that put him in “fight or flight” mode, parts that make it difficult for him to have self control or even sleep. What he has had to endure is beyond explainable. The challenges, the hard days, the suffering, none of it is “normal,” but it doesn’t take away from who he is as a person. We’d appreciate encouraging words, words that speak of who he is and how he’s progressed, but please don’t minimize our reality. It’s taken us years to get here.
2. Please understand when we can’t participate.
Certain foods are best avoided when it comes to living with a child with special needs. Diet is such an important part of his overall well-being and when that is compromised with sugar or artificial dyes, the consequences can literally be unbearable for all of us, and it can take days to return to our baseline. We’ve tried it plenty of times before, and even with our best efforts of providing our own meals and snacks, all it takes is one hidden lollipop to bring chaos to our week. We may not always have time to prepare special foods, and sometimes, the truth is, we are just not up for the battle.
Some days are better than others. With every effort of recovery we do, there are peaks and valleys. There are days where he is feeling well, and we can venture out for outings and parties without any problems. And then there are days when his whole body is inflamed, and it takes him all that he has to keep himself composed. On those days, we just may stay back and play it safe. I hope you understand when that is the case and not hold it against us.
3. Please understand that we may have to hover.
I know what all of the latest parenting trends say about hovering and trusting our children’s instincts, but we also know our son, and we need to do what we have to in order to make sure he interacts positively with others. There are some days that things will go just fine, but if he gets involved in an innocent wrestling match, we know that he may hit too hard. Or kick, or push. He processes sensory input differently than most and because of this, he may not always know his strength. He may get upset if we break it up, but we know that allowing that physical contact will most likely not end well, so we will stop it each and every time.
We also know that he can easily go into “fight or flight” mode. If he feels teased or threatened in any way, he may retaliate. What may seem like normal childhood teasing may send him overboard as he doesn’t always know how to process it all. This may mean that he may yell or scream, attack, or run. We are working on coping mechanisms, and he is doing much better; he really is, but we need to be available to coach him along if he is unable to self-regulate.
We may ask him to sit next to us or to take a time out. I know some parenting books frown upon that, but we’ve also learned that the “experts” don’t always have all the answers for families like ours. We’ve learned what works best for him and for us and will do what we need to to help him get back on track.
Sometimes that may mean swinging or rocking; other times, it may require a meltdown to bring back the calm. He may yell during that time, and we may not always respond in the way that you think we should. You may think we are being too hard on him . . . or you may think that we are way too easy. Either way, we are doing the best that we can under the circumstances. And the truth is, we may get it all wrong sometimes. Please understand that our struggles have been hard, but we are doing all that we can to help him in the best ways we know how.
4. Please understand that he may not share.
It’s not that he doesn’t have the heart to share; it’s just that he sometimes struggles with OCD as well. The thought of having his things moved from one side of the room to the next can literally send him into anxiety and a full-blown meltdown. He may have certain “rules” for his things, and I hope your children will be patient with him. We’re working on it. We really are, but some days, are just not as good as others.
You can help us with this by encouraging the children to play in other areas of the home or outside in the backyard. Movement and nature are very calming for children overall and really help level things out a bit. You may also consider bringing a few toys from home that can then be shared in exchange for his. Sometimes, all it takes is a little time for him to process through it all, and then he’s just fine with opening his space to others. Please understand that he’s not selfish or mean. He’s struggling with something far deeper.
5. Please understand that we all need our friends.
I know that our play dates may not always go as well as those with other friends. I know that it may get loud and sometimes overwhelming, and we know that it’s asking a lot of you to understand all of these things. But he needs you. We all do.
The siblings need time with their friends. We value the fellowship, and our son needs his friends more than you can know. He cannot grow without practice, and he cannot practice without his friends.
Through play, we are able to teach him social cues, self-control, how to apologize, and how to forgive. Through play, he is able to overcome his need for order and welcome others into his “space.” Through play, he can practice “give and take” like we often talk about and practice hospitality with cups of lemonade or bowls of popcorn.
It is through you that he can move forward in his recovery. Please understand how very grateful we are, and please help your children understand his differences and those of children just like him. Our family is unique in some ways, but there are many more working through the same challenges that we are. The more we can help our children open their hearts to those who are a bit different, the better all of our children will be for it.
This is a quick list of some things that may help:
- Limit physical contact.
- Be flexible with toys and playing spaces.
- Please don’t tease or make fun of him (or others) for being different.
- If he says, “stop,” please do.
- If he does something concerning, please tell us–the first time.
We’ve come a long way, but we still have a ways to go. We appreciate your understanding and hope you’ll pray for us as we push through.
Our boy is truly amazing. He is brilliant, and he has such a heart for others, and he loves to be with his friends. We just hope that you’ll give him the grace that he needs to show you who he really is. Sometimes, it just takes a little extra understanding and love . . . just like the rest of us.