Special Needs Spotlight || Liesel and Wells

Hi, my name is Laura.  My husband and I have 6 children: Liesel (17), Gwyneth (17), Madeline (14), Gretchen (12), Pace (8), Wells (5).  We are currently living in Malaysia, which has been quite a fun adventure, and also very, very hot!  As a family, we enjoy swimming, listening to music, and traveling to new places. We will be moving back to the U.S. this summer, after three years in Malaysia, and I have to say I am very much looking forward to having a Costco to shop at!  I will miss the sense of adventure that living in Malaysia brings, though.  I hope you enjoy learning a bit more about our family. Liesel was born with several non-genetic birth defects, and Wells is autistic, so our family has gotten to experience many different aspects of the special-needs arena!  

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Miggy: Hi Laura! Thank you so much for being here today and sharing your special needs journey with me and my readers. You have two children with two very different special needs–your daughter has limb differences which of course fall under the umbrella of physical disabilities and your son has autism. Lets start at the beginning with each child….since your daughter was born first, can you take me back to the day you found out about her limb differences? Do you remember how you felt then? Can you compare those first thoughts and feelings with how you feel now?

Laura: When I was about 24 weeks pregnant with Liesel and Gwyneth (they are genetically identical twins) I started having complications. In a very in-depth ultrasound, the doctors discovered that twin A (Liesel) was really struggling. Her right arm was visibly smaller and missing some fingers, and one of her legs appeared to be short as well. It was hard to get a good enough look to really tell what was going on. I was having pre-term labor, low amniotic fluid, and bleeding, so the doctors were really concerned that the girls would be born before 28 weeks. Liesel’s additional problems made it even scarier. I remember being so, so sad and scared!!! Mostly, I was just concerned that the girls be born healthy, but I was also really worried about Liesel’s arm/leg situation. I was on strict bed rest and would lay on the couch all day thinking and wondering and worrying. I was so overwhelmed that I remember thinking I might never smile again! By the time Liesel and Gwyneth were born I was just so happy that they were alive, but still really worried about how Liesel’s life would be (physically, socially, emotionally). The first time I held her and unwrapped her blanket so I could see her arm was a very emotional moment for me. I was so concerned about her future! Fast-forward to now, and Liesel is a beautiful 17-year-old who is on the swim team and rock climbs and leads a totally normal life! I wish I could have seen how great her life would be. In fact, she’s said lots of times that she wouldn’t wish for two arms. I NEVER would have believed she or I would feel that way back when I was pregnant with her.

Miggy: Years later you have a son, at what point did you start to see some red flags in his behavior and when were you able to get a diagnosis? Again, can you compare those first thoughts and feelings with how you feel now? Also, were there additional thoughts about having now 2 children with very different needs?

Laura: My son Wells (short for Maxwell) started showing signs of failure-to-thrive when he was about 4 months old. Feeding him became a full-time job. He was delayed in reaching his physical milestones, as well. He started early intervention therapy (occupational therapy and speech/feeding) when he was about 10 months old. For a long time, we kept thinking he was just a little “behind” and that he would catch up soon. We moved to Malaysia from the U.S. when he was almost 3 years old. I started feeling like there was a bigger problem than just being “behind”. Wells was still functioning at an 18-month-old level. Seeing pediatric specialists is a bit harder here than in the U.S. but we were able to find a great occupational therapist and speech therapist and find a preschool he could go to. His diagnosis was still “global developmental delays” with possible ADHD as well. When he was 4 we started talking about the real possibility that Wells had autistic spectrum disorder, but he doesn’t have some of the characteristics of a “typical” (ha!) autistic child, so his doctors were reluctant to diagnosis him beyond just having developmental delays. Just this past January, we flew to Singapore to visit with specialists there. He was tested using several assessment tests and came out clearly autistic in all of them. I honestly didn’t really have a reaction then–I had known for a long time that whatever Wells was dealing with was major, and I was actually relieved that there was finally a diagnosis and something I could tell people! It hit me a few days later, though, and I did go through a grieving process. Wells is 5 right now, and will start kindergarten this next year (in the U.S.–we are moving back in June), and I have real concerns about how it is going to go, and about the rest of his life, too (will he live with us forever, etc.). My husband and I laugh that we thought having twins for our first kids and then having Liesel’s challenges was our “trial in life”! Nope!

Miggy: I know that each child and their particular diagnosis and needs are all very unique, can you talk to us about your children’s and explain how those needs affect their and your family’s day-to-day life?

Laura: Besides Liesel’s arm situation (which is an ulnar deficiency–meaning her arm ends basically at her elbow, with two small fingers at the end), she had hip dysplasia, a leg-length/size discrepancy, tethered cord syndrome, scoliosis, and bladder issues. She had her first surgery at age one to un-fuse the two fingers on her right arm. They can now move independently from each other, which has been really helpful for her. She’s had 5 or 6 bladder surgeries, and a back surgery. Her worst surgery was when she was 11 years old and had her leg lengthened with an external fixator (her femur bone was broken and stretched apart over a few months and then allowed to grow back together). It was so awful! I hope I never have to do anything harder than watching Liesel go through that! (Knock on wood, right?!) I know it’s the hardest thing Liesel’s ever done, too. It’s a really painful surgery and the months while the bone is stretched apart is full of PAINFUL therapy three times a day. I can hardly even think about it. But anyway, other than the times when she’s been undergoing/recovering from surgery, her life has been pretty much normal. She’s a twin, and they’ve been able to do almost the same things from day one. Liesel just gets creative and figures things out!

Wells affects our lives pretty much every second of every day!!! He is such a crazy lovable little stinker. We have to factor his needs into everything we do. Routines are really important to him, and he doesn’t regulate emotions very well, so being out in public is tricky. Luckily, now he tolerates wearing headphones so he can listen to music or work on his kindle while we are out and about (like at church–holy cow, church used to be hard!), which helps him not be so overwhelmed. He still acts very much like a 3 year old. (He’s 5 1/2). He’s verbal, which is great, but he uses words in a funny way–about 70% of what he says is quoted from a book or a movie. He also doesn’t have an “off switch” or a “quiet button”, which keeps things exciting. He is getting better at actually having conversations, which is such a nice change. He is also physically behind and quite clumsy and also completely unaware of danger. He would love nothing better than to climb over our 6th-floor balconies and “fly”. All the knives in the house have to be hidden because he uses them as swords. He also bumps his head really hard on purpose when he gets upset so we have dents in our fridge from his head! In spite of all that, he is actually a very happy kid most of the time. Anything that comes out of his mouth that is not part of tantrum is absolutely delightful. He LOVES music and swinging and spends several hours a day in the playroom listening to music and singing while he swings on his swing. My other children are completely in love with him, which I view as one of the best blessings in my life.

Miggy: What are the biggest worries you face for your children? On the flip side, what are your hopes and dreams for them as well?

Laura: With Liesel, there are still concerns about her bladder and back, so I hope we can resolve those before too long! Pregnancy might be hard on her because of her hip/back/bladder situations, but we don’t have to cross that bridge for quite a while! Other than that, I don’t really have any worries–she’s proved herself to be completely capable of doing anything she wants to do!

I am still worried about so many things for Wells, and have had to learn to just take it a day at a time. Most days are happy and good, so I try to not worry about all the many what-ifs. I really hope we can figure out something that will work for him school-wise. I hope he stays happy and carefree like he is right now. He really believes that everybody loves him, and I hope he can hold onto that feeling for just a while longer. Long-term, I hope he can eventually be stable enough to live on his own, but I can’t let myself get too worried about that!

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Laura: Laughing is the only way we have gotten through so many things. Lots of our jokes probably seem wholly inappropriate to outsiders, but oh well. Liesel has lots of big scars on her leg from her lengthening surgery and we like to pretend that they’re shark bites, and that the shark bit off half her arm, too. Young boys love her arm because it looks like a t-rex arm, so we get her all sorts of t-rex paraphernalia, like t-shirts with a t-rex doing push ups. We think all the t-rex jokes about short arms are pretty funny (She doesn’t get offended when she’s excused from doing push-ups because t-rexes can’t do them either. But she can hold a one-arm plank for a long time!). Liesel also named her hand “baby hand” when she was about two years old, and declared that it was a “he.” “He” is kind of like a separate person in our family. Also, people absolutely love to hold her hand. It feels so nice to hold and is the perfect size. Our other kids have fought over who gets to hold “baby hand.” Wells would hold onto it for hours if her could sit still for that long.

We have absolutely survived our lives with Wells by laughing. I notice all the funny things he does during the day and then I make a report to the rest of the family at night. It keeps us loving him even when he is such a stinker. He quotes books and movies all the time, and puts them into real-life situations in the most humorous ways. We all go around quoting him, now. We have to ride in an elevator several times a day here, and he often has everybody in the elevator laughing by the time we get to our floor. I have to see the humor in my life with him or else I would just cry. It’s either laugh or cry with him, and I choose to laugh (usually).

Miggy: You are in the unique position of having one child with a visible disability and one child with a non-visible disability. Can you talk a little about the unique challenges that come from having children with both a visible and non-visible disability? Do you find one more challenging than the other, or would you say the challenges are simply different? How can people best approach or respond to your children? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Laura: Liesel’s disability is one of the first things people notice about her (besides that she’s an identical twin–her disability is not a genetic one, and she and Gwyneth are genetically identical, so they look exactly alike aside from some missing fingers and a few scars). She does get lots of stares and you can tell people are wondering about it. Sometimes if she can tell people are looking, she’ll wiggle her fingers at them just for fun. If people ask, she is very up-front about explaining it to them, and doesn’t really get too embarrassed. I practiced really hard when she was a baby to just explain things in a calm, nice voice to people who asked or stared, so that when she could answer for herself, it was no big deal. For anybody who knows her well, her disability is a non-issue because she is so “normal” (I hate that word, but you know what I mean) in every other way. It’s nice that Liesel is so open about her experiences. In fact, she even gave a TED-X talk about disabilities and how they’re just differences.

Wells is kind of the opposite of Liesel, in that he looks like a normal 5-year-old boy, but doesn’t act like one. In some ways this is harder because people expect him to act normal and can be surprised and frustrated when he acts like a 3-year-old instead (or even a 2-year-old). The best thing for Wells in public is for people to just leave him alone, which people don’t very often do. For example, somebody asking Wells for a high-five, or asking him how old he is can really set him off. With Liesel, everybody is pleasantly surprised at how much she can do, and with Wells, sometimes they are unpleasantly surprised. That sounds awful, I know, but really as soon as Wells quotes them a whole book or a movie or busts out his dance moves and starts singing, they are usually on his team again. I feel like I have to do way more explaining of Wells’ behaviors than I ever had to do with Liesel. Also, with Wells a lot of people will try to make me feel better (?) by telling me some way their child is behind, too, so they “know how I feel.” I know they mean well, but it’s pretty hard to know they really have no idea what life is like with an autistic child. I also get a lot of “helpful” suggestions of things to try with Wells. One person asked me if I had ever tried to teach him how to whisper. Um yes, I have, thank you very much!

Miggy: If you could say something to the mom who just starting on this journey of special needs–either with autism or limb differences–what would you say? What would you say to yourself if you could go back in time?

Laura: I would let other moms (and myself!) know that we can do this! We love our kids more than anyone else, so there is no one better for them than us!!! And that things usually turn out better than we think they will, so just keep on hoping! Also, that it is absolutely amazing to watch kids overcome hard things. My kids are way better at doing hard things than I am, for sure! Also, that I think it’s normal to grieve for something, and then become okay with it for awhile, and then grieve again, and then be okay again, over and over! That was a lot of random things!

Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?

Laura: I have learned to both give up on the expectation of “normal”, and also do everything I can to give my kids the best hope they have of being “normal”–an oxymoron, for sure! To clarify, I have learned to stop caring what other people think is normal, as far as looks (Liesel) and behavior (Wells) and focus on what feels right and good for us. We talked about getting a prosthetic arm for Liesel when she was a baby, because that seemed sort of expected of us, but we (along with our doctors) decided that Liesel used her right arm so well as-is that we didn’t want to mess with that, so we never got her an arm. With Wells I learn every day not to care what other people think about my parenting skills–a lesson Wells helps me relearn over and over again (today it was with a 20-minute very loud, very public tantrum over a bite of applesauce). I have learned to really cherish the smallest amounts of improvement and not worry too much about the setbacks. For me, it is all about the balance between expecting and wanting and working for the best possible outcome, and being willing to be happy when it turns out to be different than I thought it would be.