5 Things To Know About Special Needs Parenting

Miggy is a mother, wife, artist, and special needs advocate who blogs about all this and more at This Little Miggy Stayed Home. She has been married for 10 years and has three daughters blog-named PSP, Lamp and Zuzu. Lamp was born with a condition called microgastria and limb reduction complex, which means she has limb differences on all four limbs. Coincidentally all her daughters were born with extra awesome as well. Miggy features a special needs spotlight on her blog each Friday where she interviews different families with children who have special needs. To date she has interviewed over 130 families. Undoubtedly, this feature has become a favorite among her many blog readers and herself personally.

Today, we are so excited to have had the unique and humbling opportunity to interview Miggy. She is truly a force for good and her writing is incredibly powerful. If you know of anyone with similar struggles, definitely direct them to her blog as I assure you it will become a great resource in their lives. But for today, enjoy her answers and soak them in. They are helpful for parents with children who have disabilities as well as for those of us trying to understand how best to react and teach our children how to interact with all different types of individuals.

1. What were the best resources or ways that you found resources to help you learn and adjust to Lamp's condition?

Well this is a tough question because there are some great organizations out there for kids with limb differences, but when you get down to the specifics of our daughter’s differences, we’ve really had to forge our own path. 

Of course in the beginning I was googling like crazy and found an online forum for parents of kids with limb differences (this site is now defunct) and was able to connect with a couple people. As I said, there are some great organizations like Amputee Coalition (http://www.amputee-coalition.org) and The Lucky Fin project (http://www.luckyfinproject.org) which both deal with amputation and limb differences, but I would say the vast majority of the kids I would run across online were usually dealing with 1, maybe 2 limbs affected, which is really different from the challenges we were facing. Even when I talked with moms of kids who have differences on all 4 limbs, they weren’t really anything like my daughter.

In the beginning I would hear people say things like “Just watch, she’s going to be climbing trees before you know it!” because they saw a video of a kid with limb differences on line climbing trees or “My kid can do anything a typical kid can! He hasn’t been held back at all!” from a parent who had a kid with a difference on one arm. I remember having this conversation once with a limb different mom and, bless her heart, she was talking about her daughter who had the lower portion of one arm missing and was trying to give me a pep talk, but I finally said, “Well our daughter IS held back by her differences. She can’t walk and she doesn’t have any hands.” And it finally clicked for her that while both our kids fell under the ‘limb difference umbrella’ our realities were very, very different. This was when Lamp was about 2. And while Lamp still doesn’t walk independently at the age of 5 (she’s getting there though) in general she is a very ABLE girl and not someone I think of as being “held back.” But in the early years I often felt alone, even amongst other limb different families.

At some point you realize, “Oh I’M the expert on my daughter.” And you forge your own path and trust your gut (the most important advice I could ever give a fellow special needs parent.) We took what was helpful from the people we met along the way who had something to offer, like the many doctors and therapists Lamp saw in her first few years of life. I’m so grateful for all their help and the positive impact they had and continue to have on her life. But again, there was no one expert who suddenly unlocked all these doors…it’s a really collaborative effort that takes a lot of back and forth. Eventually we found a great hospital (Texas Scottish Rite) and doctor in Dallas who works exclusively with children with limb differences. We were able to connect with another family who has a child with similar differences as Lamp and really, finding even that one family you can talk shop with really helps. This hospital also runs a camp every summer for kids with limb differences on 2 or more limbs and this is the first summer Lamp will be able to attend! We’re planning on going and I’m really excited for her to have this opportunity.

Fourth of July Fun!

And quite honestly my blog and doing my special needs spotlight has really helped me connect to other moms even if their child’s diagnosis is vastly different from mine. I’ve had a lot of moms reach out to me as well, in this respect we’re very lucky to live in the internet age. I think most special needs moms can find someone who will be able to relate to their challenges, bounce ideas off of and who can also pass on some great resources.

2. What suggestions do you have for those with older children who are starting to understand that they are different? What can they do to help their child feel empowered?

Lamp was about 2 1/2 when she started to make that transition from not knowing she was different to knowing. But since we have always had to confront staring, pointing and people asking questions her entire life, she had already been listening to us model responses to other people for years. So I guess my first piece of advice would be to ask yourself, how do I want to handle these things? What behavior do I want to model for my child and what type of influence do I want to have on those we come in contact with? I made a decision early on that I would do my best to give people the benefit of the doubt and to handle these situations with grace and in a spirit of educating in a positive way. It has not always been easy and in fact has not always happened, but overall I have really stuck to that goal from the beginning. There have definitely been times where I’ve had to put my mama bear suit on and be more concerned about my daughters feelings and safety, than to worry about education and positivity…but overall this has been a good decision.

As time wore on and as Lamp has became more and more aware I felt that it was really important to be both completely honest with her and compassionate and loving at the same time. It was hard to tell her she was different and that people stared at her because she looks different from other people or that we don’t know when she’ll walk or that she’ll always be shorter than most people. Those are some tough conversations. But it’s really important to me that she knows I’ll give it to her straight, but always with compassion, love and tenderness. Compassion without honesty is like handing our kids a pile of crap on a plate and telling them it’s apple pie… eventually they’re going to figure it out on their own and all they’ll learn is they can’t trust us. I think this is important for all kids.

The other part of the part of the honesty coin is helping her see all she can do. Lamp can’t walk, but she can write with her feet! Most people can’t do this and we always remind her how amazing that is! We remind her that she is very bright, that her teacher told me she’s one of the best readers in her grade level, or what a joyful and positive personality she has. The term differently abled isn’t just a PC term to help the disabled feel good about themselves, it’s a real thing and we always remind Lamp of her many abilities.

Lastly, I would say to make sure your home is always going to be their sanctuary. Again, I think this is important for all kids, but especially for our special needs kids. If anyone ever disrespected Lamp in our home we would not tolerate it, even if it meant we had to ask them to leave.

3. What advice do you have for other parents who are trying to explain Lamp’s differences, or another child with visible differences, to their own children?

It has taken about 5 years for me to finally feel like I have a rough formula for talking to kids about Lamp. It's not an exact science--every kid thinks and reacts differently--but for the most part, it works really well.  This is mostly meant to be used with young children approximately 8 and under.  Older children should hopefully start to know a little about boundaries and I would not consider having this type of discussion with an older child (or adult) in front of Lamp appropriate.

1) Questions are OK.

The emotions that a child feels when seeing or meeting another child with special needs can range from curious to nervous or scared to just plain confused. Let your child know that if they have a question it's OK. Try not to shush them and turn them away from the child they just encountered--this only reinforces an exclusionary mentality. If your child points at Lamp and says "What happened to her arm!" my suggestion would be to get down on their level and have the whole "some people are born differently" conversation right then and there. Reference friends or relatives who have a wheelchair, walker, glasses, etc. I know this is the hardest part because we think the kind thing is to shush our children and walk away. But walking away implies that there is something wrong with special needs kids and we don't interact with them. So please, do your best to stay. Remember, Lamp knows she has limb differences--it doesn't hurt her feelings to have it explained in front of her. What does hurt her feelings is having a rude interaction and then having that potential playmate taken away before things are set right so to speak.

2) Reinforce kindness

While it's important not to shame kids for their curiosity, it's also very important to let children know in no uncertain terms that some things are NOT OK.  It's not OK to point, stare, laugh, call names or use mean words. Even if your child does this innocently--"she's weird!" "Yuck! Why does her arm look like that?"--please correct them.  For example, "That's not a nice word and that might hurt her feelings" or "that would really hurt your feelings if someone laughed at you."  It can be said kindly, it can be said firmly but it HAS to be said. Curiosity can quickly turn to cruelty in young children if left unchecked.

Definitely starting to get the hang of walking.

3) Find common ground

Once your child has some understanding that some people are just born differently now is a great time to find some common ground. "She may be a little different, but she's mostly the same as you.  I bet she likes a lot of the same toys/games/food that you like." You can then ask the child or the child's caregiver what they like to do. Establishing this sameness is KEY.  This is when the light goes on and children realize, oh... she's just another kid, like me.

4) Emphasize strengths

Now this one won't be as easy to do if you don't know the special needs child personally, but as Lamp's mom I try to emphasize that she is DIFFERENTLY-abled. Yes there are some things she can't do, like walking which is why she drives a power chair, but OMG, she can drive a chair!  Or I always say, you want to know something really cool?  Lamp can write with her feet!  This is when you see the jaws drop--literally. Again, it's super important for kids to understand from a young age that disabled really means differently-abled.

4. When you first learned about Lamp's condition what feelings did you experience? How did you make it through that?

We first learned about Lamp’s condition at our 18 week ultrasound. I remember that day well and when I replay it in my mind it’s like watching a movie. I see our family of three--my husband, our oldest daughter and myself--meeting in the parking lot of my OB’s office on a sunny Friday afternoon, so giddy with excitement as we all go in together for the big gender-revealing 18-week ultrasound.

During the actual ultrasound I tell the technician that I’ve been a little worried because I haven’t felt the baby move that much. She immediately tells me that my placenta is on the tummy side of my uterus and therefore I probably can’t feel the baby that well. She then says, “There’s the heartbeat--it looks great!” And I relax. Everything is going to be fine. My husband, my daughter and I are all chatty while the tech is rather quiet, but I don’t really notice until later. When it comes to telling us the gender she says in very anti-climatic, almost stoic tone, “I think it’s a girl...I can’t get a good look but I think it’s a girl…”  And I’m like, really? That’s how you tell us this exciting news? But at the same time I was too excited to notice. I really, really wanted another girl. The tech kept working, being super quiet and then she suddenly gets up. Stunned I said, “Is that it?” She quickly says, “I’ll be right back.” And walks out. My husband and I look at each other and immediately our hearts drop.  He then says, “I feel like I didn’t see an arm on the baby…”

What? What are you talking about? I couldn’t even process what he was saying or that it might possibly be about this baby I’m carrying. That sentence had no relevance in my world and whatever he thought he saw or didn’t see was clearly just wrong. And for a split second I imagined that I might have a kid without an arm and again I couldn’t even process the idea. This seemed like the most crazy suggestion I had ever heard in my life. Then the Dr. walked in. When I asked him if everything was OK, he said, “No.”  And I will never forget the following sentence:  “While your baby’s head, heart, lungs, spine and kidneys look fine, it’s the limbs.  All of them... are deformed, misshapen or missing bones altogether.”

The doctor kept talking and using terms like “skeletal dysplasia” and “dwarfism.” The words were pouring out of his mouth so quickly like water over my head that I was struggling to breath, drowning in what he was saying. When I finally opened my mouth to ask a question I got about halfway through before I burst into tears, buried my head in my hands and sobbed. I think that’s the only time in my life I have legitimately done that. We left the office with no answers. This completely unknown condition was either “incompatible with life,” or if she did live, our baby was clearly going to have a host of issues all of which would remain unknown for an indefinite amount of time.

My initial feelings were sadness and feeling very overwhelmed. Those first 24 hours were pretty rough and we didn’t really know what to do or say. We cried in the doctors office, we cried on the way home. I even remember waking up crying the next morning. We had asked some friends to come over and pray with us the following day and I remember feeling a distinct measure of peace. We still had a lot of ups and downs the rest of the pregnancy, but I also felt like everything was going to be OK. And by the end of my pregnancy the regular old feeling of just being excited for our new baby returned. It was around this time I started to realize that the love I would feel for this child would swallow up the fear of our future and help us do whatever it is that we would need to do for her.

5. How did your parenting style have to adjust in order to cater to Lamp's needs?

I don’t think it was a parenting style that needed adjusting as much as it was a life outlook that was going to adjust whether I liked it or not. Immediately I realized that the decision to become a parent also means that you have no say in any and all qualities your child might possess—good or bad! That’s pretty incredible when you think about it. So many people in our lives are there because we choose them based on qualities that resonated with us. Partners, spouses, friends and to a certain degree we choose how much or how little we let certain family members in our lives. But our children are a different story… and the miracle of it all is that we love them no matter what. And there was a part of me that sorta questioned that love at first because special needs parenting always seemed synonymous with ‘burden.’ And I was definitely afraid that this new life was going to be one of sorrows and burdens. (I need to be careful here and with respect to other special needs families say that some situations are much more burdensome than others—medical bills, round the clock care, long hospital stays—and some situations are filled with sorrow, especially conditions that eventually take a child’s life. I’m really not trying to gloss over the whole of special needs parenting things, because I do want to acknowledge that sometimes this is a really difficult journey.) Life with Lamp is anything but a burden and what I sort of forgot about in those first few weeks was that motherly love was going to help me do what I needed to do for my child. It was as simple as that. Sometimes we think we could never do this or we could never do that, but when it’s your life, it’s sink or swim. And in the case of being a parent, you do it out of love and because of that, it’s not a burden.

 The truth is, every single human being is a total gamble. If ultrasound machines were really helpful, they would tell us who the future murderers, rapists, and bad drivers of the world were going to be. Now THAT would be helpful information. Millions of parents the world over have had an ultrasound appointment where everything came back positive and normal, and they went on to have these ‘healthy’ children who grew up to be drug dealers, belligerent teenagers who sneak out of your house and wreck your car, liars, cheaters or just unspectacular, average people. And guess what? They love them anyway. When you think about the time you spent dating and choosing your mate it seems almost insane that we then go on to invite tiny humans into our lives where we get absolutely NO SAY in these little people are. We get no say in their personality, likes, dislikes, abilities, disabilities. And we love them anyway. Every single human is a gamble and we love them anyway. People with disabilities are no different. If you are ever  facing the possibility of having a child with special needs, I promise that you will love them anyway. 

Second, the most important thing I’ve learned from being Lamp’s mom also has a lot to do with what I’ve learned from doing this spotlight and it is this: we are valuable and priceless simply for existing. While I really appreciate a lot of the effort I see these days in teaching our girls to place more value on their brains than on their looks, the truth is not everyone is smart. So if we go about teaching that our intellectual ability is where our value lies we still miss the mark. Don’t get me wrong, I’m all for encouraging a focus on our insides vs. our outsides or in general encouraging everyone to develop their talents and strengths to the best of their ability. I just want to make sure we don’t ditch one lie for another. One lie tells us you’re not good enough if you don’t look a certain way. Let’s not switch it for another lie that says you’re not good enough if you’re not smart, accomplished, talented, coordinated or successful. I’m not saying don’t be those things, I’m just saying don’t believe those things equate to your worth. I know it’s a fine line and one I’m still working out myself, but I believe this to my core. I have interviewed parents with children who couldn’t talk, walk, or even move independently, kids that don’t have typical brain function, who are missing limbs, missing eyes, kids with heart defects, and many, many more.  And every single one of them is priceless.  

And so is Lamp.

And so are you.