Why My Child Doesn’t “Look” Like They have Special Needs
Note: I may earn money or products from the companies, products, or links mentioned in this post.
I have two special needs kids. My son has autism, SPD, apraxia of speech, and a feeding disorder and my daughter has many medical complexities, a feeding tube, and gets four different therapies per week.
When it comes to my kids having special needs I have heard it all. But when it comes down to one of the worst comments someone can say about my kids it’s the variation of, “He looks fine to me.” I have heard, “He doesn’t seem to have autism,” “He doesn’t look like he has autism, ” “She doesn’t look like she needs a feeding tube,” and many other variations.
Because I and so many other special needs parents get comments like this, I wanted to write a post explaining why my kids “look” fine. I am passionate about this topic because I don’t think people realize what they are really saying when they say comments like this. Here’s exactly why my children may “look” fine to you.
4 Reasons Why my Children Don’t “Look” Like They Have Special Needs
1. Kids With Special Needs Don’t Necessarily Look Different
Just because a child may have special needs doesn’t mean he or she will look any different than you or I. A lot of children with special needs look just like any other average, typical child. This is called an invisible disability. There are many many adults and children who have invisible disabilities, our job is to be more aware of this and to be compassionate and inclusive.
2. What You Don’t Know or See
My children may not look like they have special needs, but there are plenty of things that many people don’t know or see. People don’t see the behavior problems, the sensory problems, the constipation problems, the hours it takes at each meal to get my son to eat, the times where he has a meltdown because we can’t understand what he’s saying, and so much more. There are plenty of things that people can’t see, but they are all a part of his special needs.
For my daughter, there are also many things that people can’t see just by looking at her. She has a feeding tube that might not always be visible and no one sees the hours of time spent at multiple specialist’s offices. I get told a lot that she looks great and that they don’t understand why she needs a feeding tube. What isn’t understood is that the reason she looks great is because of the feeding tube. That feeding tube probably saved her life and continues to do so every day.
3. What Happens at Home
People think my children “look” or seem normal because they see my child for a short time. In that short time they may be doing great. We’ve had family members come spend a day with us in the past and they tell us nothing seems wrong with our kids. The point is that they are only seeing on single day in their lives, Â not seeing the whole overall picture.
My son has good days and bad days. Some days he does great, other days are very hard for him. Home is a safe place for him so the majority of the behavior and other problems he has happen at home. So just because you may see my child out and about for 10 or 20 minutes of that day and they look fine, doesn’t mean that they don’t have special needs.
4. Therapy
I saved this point for last because this is the most important to me and my family. We’ve been told that my son is a perfect example of a child who got early intervention. My son has been in therapy since he was 12 months old, my daughter started therapy at that the early age of three months old. They both have worked extremely hard to get to where they are today and to what you see as “normal.”
You don’t see my kids “looking” like they have special needs because of the early interventions, because of our advocacy for them, and because of the hours and hours of hard work they did in therapy. I look back and remember where my son was three years ago, and I am amazed at how far he has come. I look at my daughter and watch her improvement in walking, eating ,and sensory awareness each and every week in therapy and I am amazed.
When you see my kids, please know that they “look” normal because instead of playing with friends they were in therapy. Because we advocated for them and spent hours dealing with doctors and insurance companies so they could be where they are today. Instead of going on playdates or hanging out with other moms I was working with our kids at home and taking them to therapy. Special needs parents sacrifice so much and my kids are an example of that.
My kids may “look” normal, but when I look back to see where they were, I am so grateful. I am so proud of my kids and so proud of how far they have come. The next time you see a special needs child that doesn’t “look” like they have special needs, I hope you remember that the reason for that is because of how far they have come and because of all the hard work it has taken to get that point.
This is a very good reminder to me! Thank you đ I think we could all use a reminder like this before we make offhanded comments about someone seeming fine.
I know how you feel my daughter has high functioning autism and I get that same stupid statement I ask them when they became experts on autism and how much do they charge for their seminars. My daughter is where she is thanks to my angels the therapists! Oh and early intervention it is crucial
Reblogged this on http://strugglingtothrive.com with the comment:
“I love this! Itâs so well explained. Iâm frequently in this situation with my son since he mostly struggles with eating and gaining weight. Itâs not obvious to strangers he has a feeding tube, and his therapy has significantly lessened the harmful effects of his hypotonia.”
-Ashley
Again – such another great post that is so true and accurate! We have been so blessed to find awesome therapist who have helped guide us along this journey – we wouldn’t be where we are at today without them!
AMEN! I try to keep in mind that some comments and judgements (judgement is the worst) are made out of ignorance but some days I simply want to say “come live at my house for a day.” Things are trying enough as it is, a little kindness from people goes far.
Thanks for sharing! As a parent of”normal” children, I appreciate greatly the posts and comments of those in the trenches with different situations. My niece was a very special girl and had obvious needs. I guess I’m wondering – when the needs aren’t obvious, what can I say to show my support?
Rachel, I used to be vey bitter due to some of then coments I received. When I expressed my frustrations to my daughters child psychologist she replied “you’re the expert of your child. You know your child better than anyone.” That statement was profound. I wish more people would realize that. Parents are trying their very best.
What a GREAT post! WOWSERS! You rock on with your bad self. I’m totally meaning “bad” in the cool way! I’m thankful I read your tweet this morning and more of your writing. I LOVE that categories you have up top of you blog header! I’m inspired to organize my blog better!
I am also going to share this specific post on Twitter, FB, and Pinterest! I hope you don’t mind. It is excellent. It is honest, and it is lovely for what early intervention does and what special needs may be hidden from view. God bless you (and me) as we mother and advocate for a Big God and the work it takes to make it through life’s challenges. Jenn
I’m glad you’ve enjoyed this post. Between my son and my daughter I feel like I’ve had enough experience to write something on this topic. Thanks so much for sharing and good luck with your son!
Oh my goodness…. yes and yes!!!!
After seeing this post, I want to extend an invitation to consider being a guest blogger on The Sensory Spectrum! You can find more details here: http://www.thesensoryspectrum.com/calling-all-bloggers/
Regards
Jennifer, The Sensory Spectrum (and The Jenny Evolution)
I would love that! Thank you. đ
Posted to my facebook:
Why My Child Doesn’t “Look” Like they Have Special Needs
This mom took some time to put my feelings into words.
I don’t take offense to well-meaning comments, but I will say that comments about my child looking fine after I mention some struggle we are dealing with are particularly hurtful because they negate the amount of effort it takes to deal with whatever that situation is. Our children put their best face forward in front of others (don’t we all?), so if there is a time where you get a glimpse of our struggle, magnify that times about a thousand and then imagine that every day (sometimes many times each day) and that would give you a slight idea of what our lives are like.
Saying my child looks fine after I spent the last few hours dealing with an autistic meltdown, or after I was up all night with a child in pain, or after I spent hours consoling a child coping with anxiety due to the way their particular disability makes them feel different – that makes me feel like the struggle is invalid in the eyes of the person making the comment. Although, often, it is, because they have no idea how much effort we put in to help our child to function at their best while in the pubic eye, even if the public is a family member.
I am sure people mean well, but this is probably them comment that hurts the most. If I share with you about something pertaining to my child’s struggle, the most helpful comment would probably be something empathetic, because that is really what special needs parents need more than anything else.
Spot on! Thank you.
Glad it was helpful!