Friday, February 27, 2015

Special Needs Spotlight || Lisa and Liam

G'day from Down Under! My name is Lisa; I'm a 35 year old American living in Perth, Western Australia with my husband Paul and our two children. Liam is 3.5 years old and was born with congenital talipes equinovarus, more commonly known as club foot. Our daughter, Cora, is 5 months old. Club foot, where the foot or feet are turned inwards and upwards from the ankle, is a relatively common congenital deformity, occurring in roughly 1/1000 live births. My husband Paul was born with club foot 40 years ago. Having, or being a parent with club foot is only a 'risk factor' for going on to have a child with club foot- there isn't a clear genetic link/heredity... so we really didn't know if our children would be effected. Unfortunately, I have a genetic disease, and both our children had a 50% chance of inheriting the faulty gene: Autosomal Dominant Polycystic Kidney Disease. We don't know if either of our kids have it, and for various reasons, we don't plan to find out. ADPKD is characterized by fluid-filled cysts growing in the kidneys. A normal kidney is the size of a closed fist- my polycystic kidneys are each the size of a football. A person with ADPKD also has a higher prevalence of various heart, liver, and brain conditions as well.


Miggy:  Lisa thank you so much for being here today and sharing your story with us. Not only was your son born with club feet but you also have a kidney disease as well.  So lets start with you, can you tell us a little about your condition--when were your first diagnosed?  Did it affect you as a child?  And how does it affect you in your day-to-day life now?

Lisa:  My diagnosis was a complete shock. I was 20 years old, living away from home at an out-of-state college, running track and leading a very active life. I had an ultrasound for re-occurring bladder infections- that's when they noticed my very large polycystic kidneys. There is no treatment or cure, you simply manage the symptoms. In my case that means high blood pressure, the occasional painful infected cyst, a permanently round belly, no 'vigorous' exercise anymore, and more recently- nausea. My pregnancies were classified as high risk, and generally I was worried there wouldn't be enough room in my abdomen for a baby-- but the body is an amazing machine, isn't it?! My body adjusted and the babies fit fine!

My first pregnancy was fairly uneventful and my kidney function didn't change. However, in the last 18 months, which included my second pregnancy, my kidney function dropped from 90% to around 40%. That is an extreme drop in function, and I really worry it is all happening for me-- end stage renal failure. Not knowing what will happen is one of the hardest things to live with. It effects our job choices, where we could live in the future, when we could travel, and when we can retire. The worst is imagining my children growing up without me. The good thing is that it really forced me to have a good, hard look at what I wanted in life.... what was left on my bucket list, and at the life paths I had been debating. I realized I didn't want to go back to school, I didn't want to work part-time-- all that was important to me was being present to mother my children.

Miggy:  Now, already having one condition to worry about, you're pregnant with your first child and you find out that he has club feet.  Can you tell us when you first found out about his condition?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Lisa:  We found out Liam had bilateral club foot at the 19 week scan. Even though we knew there was a chance our baby could have club foot, it was gut wrenching to find out. Surprisingly, knowing there was a possibility he could have club foot didn't soften the blow. My husband felt particularly guilty, and I can understand how he felt, because if either of our kids inherited my kidney disease, it's hard not to hate yourself in a small, irrational way. When Liam was diagnosed, Paul's mother told me everything would be just fine. She had lived through it herself, after all. My own mother responded the opposite way- full of anxiety and worry. Both of their responses upset me; there was no correct thing to say to me during that time!! Looking back, no one could say the right thing because I had just felt, for the very first time, the big crushing wave of protectiveness for my child.

Miggy:  Explain how your son's needs affected his and your day-to-day life when he was first born?  How has his needs changed and what is his day-to-day life like now?   
Lisa:  Liam's treatment began when he was 13 days old. It's all very routine and honestly hasn't changed much since Paul went through it 40 years ago. But to me, a first time mom, it was unquestionably a living nightmare. Over the course of 8 weeks they slowly bent his feet outwards, little increments at a time, holding them in place with leg casts. I took Liam into the hospital weekly, often on my own as Paul was away for long periods with work, and physically restrained my newborn baby while they twisted his feet/muscles/ligaments outwards. He screamed. I cried and sobbed. His skin under the casts became broken and blistered. When his little feet couldn't be twisted out any further, he had an outpatient procedure to completely sever both his Achilles tendons. They severed both his Achilles tendons with zero anesthetic, which was a decision the doctor made spur of the moment, and without my consent. For me, that was the darkest day of my life. I was already feeling traumatized from a difficult birth and from seeing and causing my baby pain, and then that happened.

After the tendon operation, he had 3 more weeks of casts. During that 3 month long casting phase, we couldn't bathe him. After the casting ended, we entered the "boots and bar" phase. Initially he had to wear the boots and bar 23 hours/day for 3 months. His blistered, raw feet had to be literally crammed into the boots, until his chubby legs formed around them. I would remove the boots and his legs were much skinnier where they had been. Each day ticked by so slowly. Through some of it I was speaking to a psychologist, but in hindsight, I wish I would've gone further and taken some medication, as I was in a very dark place. Since then he's required to wear the boots and bar ~12hrs/day- so he wears them at night to sleep in. When he was younger, this was fairly easy feat because he didn't know any different. He's 3.5 years old now, and naps without the boots and bar during the day. He knows other kids (and his parents/sibling) don't sleep in them, so he doesn't want to either (because they are hot and uncomfortable). He often begs us to let him sleep without them. But, we are nearly finished with the boots and bar phase. By age 4, if everything goes to plan, his treatment should be finished and his feet will be as corrected as they ever will be.

Miggy:  What are the biggest worries you face for Liam?    

Lisa:  Although I've been reading This Little Miggy for a long time, I never offered to do a spotlight because I wasn't sure I qualified as a special needs Mom, since my son's condition is largely correctable.  But, as I read everyones spotlights, they echoed my experiences and feelings, so I decided I was in fact a Special Needs Mom. I guess for anyone with a club foot baby, the hardest part are the years of treatment, after that, hopefully Liam will lead a very normal, active life. I do worry that despite all we've done, his feet will relapse, and turn inwards. It happens. I worry he will be made fun of for his skinny legs (a characteristic of club foot kids). I know Paul was called "chook" (and still is, albeit jokingly) because of his skinny calves.

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?  

Lisa:  Liam had thigh-to-toe leg casts for the first three months of his life....when we were still learning how to put diapers on, and when babies poop multiple times a day. We had to find a way to keep the poop off his casts, since they were only changed weekly. We had several funny inventions until we settled on handmade "poo guards" which my mom created. I thought about selling them on etsy: "POO GUARDS, 2 for $10!."  Once we entered the boots and bar stage, we had to be careful our infant son couldn't hurt us :) Getting knocked with that bar is dangerous! Our poor black lab copped it several times! Now that Liam is older he often pretends his boots are "rocket boots" and nightly he pretends the bar is a big key, and he uses it to lock his closet door. It's pretty cute.

Miggy:  How can people best approach or respond to your son and you when they find out about your condition? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Lisa:  For me personally, the club foot treatment has been a very traumatic experience. If I had to go through it again with our daughter, I think I would handle it much better. So when people asked me what was 'wrong' with Liam's legs, it upset me. Their stares upset me too. Having lived through that, it taught me first hand what it feels like to be stared at.  Now, I always make a point, if my eyes innocently land upon someone who is different in any way, to give a friendly smile, then never look again, and let us both continue on with our day. That's really all I wanted when I was going through it.

With my kidney disease, no one can tell I'm afflicted, and when/if I verbally tell them, I've only been treated kindly. I guess the only thing I would impress upon people, if I could, would be about the importance of organ donation. To save someones life with yours or your loved ones organs is a heroic act.

Miggy:  What is the biggest lesson you’ve learned in regards to your kidney condition and have a child with special needs?

Lisa:  I learned babies are not as fragile as you think- boy, they can be quite tough! Like many other parents of kids with special needs, I learned the hard way the importance of advocating for your child-- for trusting you gut, and being respectful but firm with doctors. I think it's important to share that with other unassuming friends and family, that they too, should be quite direct and open with their doctors. I learned that when you receive care that you are unhappy with, hospitals have a "patient advocate" or something similar, to mediate and fully resolve your complaints (or compliments). I learned the saying, "I'll be happy as long as the baby is healthy," can actually be hurtful. There is boatloads of happiness with a baby who isn't "healthy".

With regards to my disease, I've learned many lessons along the way. The biggest by far was the one I recently learned, that phew, my body will do what it wants, when it wants; that it truly is out of my control. That's a tough one. The way I've learned to live with that is to prioritize, and actively work towards achievable dreams, today. The focus it gave me is a gift.


Lisa, I am so glad you emailed me as I know you were on the fence about this. First, regardless of the fact that your sons condition is correctable, you are experiencing a unique part of parenthood many of us will never face and you have educated us on something I had never really thought about before. I'm sure many people are like me in that I had no idea how difficult and traumatic club foot treatment can be. (Speaking of, I want to kick that doctor in the shins for treating your son sans anesthesia without your consent.) And thank you for your honesty and sharing what a difficult journey this has been for you emotionally. There is some mom out there somewhere that needs to know she's not alone in that specific maternal darkness that comes from seeing your child in pain and knowing there is nothing you can do to take it way. That is a hard, hard place to be. I also had to nod along when you said that your mother and your mother-in-law both said the wrong thing--because there is no right thing! Yes sometimes there really isn't. And thank you for telling us about Polycystic Kidney disease and the reminder for organ donation! I hope you continue to manage your symptoms well and I wish you many, many years of good health.

So thanks for all of you who have been emailing! I've been getting more and more people for the special needs spotlight--yay! If you haven't heard back from me, please be patient--it can sometimes take a while. And please, keep on emailing! I always need new participants. Thislittlemiggy at gmail dot com.

Have a fantastic weekend!

Thursday, February 26, 2015

Playing By A New Set Of Rules

My parents divorced when I was quite young, like 2 or 3 years old--is it strange that I honestly don't really know when? Anyway, as kids we spent most of the calendar year with my mom and grandparents in Nebraska (or Colorado after my mom remarried), and then each summer we went and stayed with my dad and step mom in Utah.  One of the hardest and most confusing parts of this arrangement, especially as a kid, was the fact that we lived by one set of rules 9 months of the year, and then for the other 3 months we suddenly had a whole new set of rules.  As a mother myself I get that the idea of 'rules' as these finite and fixed things does not always happen. Circumstances often cause shifts--great and small--in the rules and the ways they're applied.  I get that.  That's not what I'm talking about though. I'm talking about one set of expectations (or lack thereof) and then a completely different set of expectations placed upon you in the next household. No one ever sat down and talked this through with us or tried to understand this mental shift we experienced as young children a couple times a year. It was challenging and confusing and frustrating.

Fast forward to the present.  Here we are living in Cincinnati and last week the girls had the entire week of off school for 'snow days.'  Of course Monday was a holiday, but the rest of the week was all due to weather. B and I grew up in Utah and Colorado respectively so we are no strangers to snow.  What has felt very strange to us is how little snow it takes here in Cincinnati to close the schools down.  I don't think we've had more than 5-6 inches (MAX) on any given day, and would estimate closer to 4 inches and yet... school closed.  They also close the schools for excessive cold as the temperatures dropped in the negative degrees Thursday morning.  I told B, I don't mind being back in a colder climate and having snow, what I do mind is school closing every time there are a few inches on the ground.  From our memories snow days happened maybe 1-2 times a year.  Certainly not a whole week.  And there was at least a foot of snow on the ground to justify canceling school.  What adds to the confusion is that snow is a normal thing in Cincinnati.  It's not like Texas or Florida where snow is an anomaly and they are completely unprepared.  They have plows, I've seen them.  It snows here! And yet it seems like the city shuts down with just a few inches. And part of me is feeling really frustrated and confused--Surely they're going to figure this out and realize that this much snow isn't cause for great alarm and school cancellations.  Surely, this won't always be the way they handle a few inches of snow.

But what I'm realizing is that we're the ones that are going to have to change. Our perspective and our sense of normal is going to have to adjust. We're playing by new rules, rules that seem to go against logic but apparently they make sense to everyone else. And while it's much less emotionally taxing and frustrating than my first example, there's a relationship. Once again I feel like a fish out of water and wondering if anyone is open to the idea that the current way of doing things isn't the only way... in fact, maybe there is a better way? But like being a kid again, you realize theres not much you can do but fall in line.

Have you ever had to learn to play by a new set of rules?  How do you morph into these new (and often confusing/frustrating) rules?  Did you find yourself always pushing against the pricks and crying foul to anyone who would listen, or did you relent and give in to your new surroundings? Also, anyone else have the 2 household, 2 sets of rules problem as a kid? Was this issue ever addressed by the adults or did you, as the kid, just have to deal?  Lastly, is there anyone in Cincinnati who feels the same way about the snow and school cancellations here? Is there something we're missing/not understanding? 

Tuesday, February 24, 2015

PSP Birthday Party Recap

I thought I'd do a quick recap for anyone out there who also may be faced with the "I want a rock party!" dilemma.  Rocks, as in stones.  That you find on the ground and in the dirt.  But also, gems.  Oh lala.  Don't get me wrong, I think it's a cool party theme and I love that PSP went for something a little out of the norm, but at first I was a little stumped.  Additionally, for various reasons we just didn't have it in us to do a party at home this year. Which is a first as we always do at home parties. So I searched high and low for something we could do that would sorta coordinate with a rock theme and while we had a couple of decent options, in the end we decided that Pump it Up (one of those places with giant blow-up bouncy houses and slides) would be the best option.  So nothing to do with rocks... oh well.  So really all I was doing was making rock themed invitations, a few decorations and cupcakes.  DEAL.

While I think I'm a good designer, I don't actually have the skills in photoshop or illustrator to make my ideas come to fruition--which really needs to change--but I know enough to make a simple invitation using pages on my Mac.  For the decorations my Silhouette was once again the MVP of this venture.

First I found these great gem images and paper cuts from MinieCo. and used the printable paper as the gem image in my invitations and added wording on the left. (Again, I created this in pages using the event postcard template in about 10 minutes.)  Then I used the paper-cut gems and made a file for my silhouette, and proceeded to cut lots and lots of paper gems. (I mentioned how I turned images into cut files in my heart-glasses post.  Take the same steps and apply it here).

While I used most of the cut out gems for decorations, we also glued diamonds to the back of the invitation envelopes.

Probably my favorite detail of the party were the cupcakes.  I am not a big cupcake person--I don't get the hype--but these have been my very favorites since I was a little girl.  They are chocolate with a cream cheese chocolate chip filling.  Boom.  One of my earliest memories is of a 3 year old me sneaking down to the fridge early in the morning and dipping my finger in the filling, then dipping it in the batter... so good.

Here's the recipe, ready?  Get a box of devils food cake and make the mix according to directions.  Then take an 8oz block of cream cheese add a little powdered sugar to mix in a mixer until smooth.  Add more sugar if needed.  Then add about 1/2 bag of chocolate chips and mix again.  Now follow the direction for cupcakes on the devils food box for oven temperature and times.  Using cupcake liners add a little chocolate cake batter in the bottom, them a spoon size scoop in the cream cheese filling, lastly cover the cremates with a large spoonful of batter.  Then bake.  So easy!

I usually don't put any frosting on these because they're so rich, but for the rock theme I spread a small amount of frosting to act as glue, then placed broken bits of rock candy and these awesome Kimmie Choc-o-rocks on top.  They were a hit.

Like I said, for the garland I used these paper-cut gems printable from MineCo and simply turned them into a cut file for my Silhouette.  I sewed a bunch of the gems in a row for a garland, spread some on the table and even made little diamond shaped stickers using my Silhouette and contact paper for the gift bags.

I snapped so many photos of the actual party, but since it's pretty dark inside and the kids are running constantly, it's pretty tough to get a decent picture but I thought this one was cute.  She had a great time and as usual was a great hostess.

I have an 8 year old.
Turns out, 8 is great.

Friday, February 20, 2015

Special Needs Spotlight || Luke

Hi! I'm Heidi and my husband's name is Mike. We are parents to a beloved little boy named Luke who is almost 5. We live in the metro Atlanta area and love music, movies and good food. Luke was diagnosed with Autism shortly after his third birthday. The symptoms of Autism present differently in each person with the diagnosis. Luke's biggest struggles are: sensory issues (he gets overwhelmed by textures and in large crowds/chaotic situations) he doesn't do well with change or transitions (any slight change or difference in a routine can result in a total melt-down) and he has severe communication-related motor-planning issues. This means that his brain knows what he wants to say but he doesn't have a way to get it out. It isn't the actual act of saying a word or making a sign or pointing to something that he can't do, rather, he struggles with the function of getting his brain to connect with his body to communicate. It is as if his brain is point "A" and the physical act of expression is point "B" but he can't find a road to travel on to get from point "A" to point "B." He knows sign language, he can repeat almost any word you ask him to but he can't do these things on his own without prompting. Luke is in therapy for 30 hours every week and he loves it. We have been so lucky to recently find a place that is a good fit for him with therapists who love him and know how to help him make great progress.


Miggy: Can you take me back to when you knew something was 'off' with your son, when you first saw the signs of Autism?  At what point did you finally get a diagnosis?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Heidi:  My son has always been very happy, smiley, affectionate, and loving. Occasionally we would wonder about his eye contact when he was an infant--it's not that he didn't make eye contact, he just sometimes seemed to be looking "past" you. He pointed to things, he was meeting all of his physical milestones. At checkups he passed the Autism screenings. He had a couple red flags, but not enough to really worry. He had horrible, horrible tantrums occasionally but...don't most kids? He is also extremely stubborn. But, again, some people are.

As he got older he didn't start to talk. At 18 months he still wasn’t speaking but nobody seemed really worried about it. At 2 years I started to really wonder about his speech and his tantrums. He wasn't talking and he cried a lot (like unconsolable tantrums that would only end when he cried himself to sleep) if he didn't like something or things didn’t go as planned. I asked his pediatrician and she agreed to refer him to an early-intervention program. They evaluated him and told me that he just had behavioral problems and maybe some mild sensory issues. They politely told me to work on being "in charge" more and said he might benefit from some occupational therapy. I left feeling relieved that they didn't think anything was "wrong" and really embarrassed that I couldn't control my toddler better.

We started OT but the therapist was very rigid and demanding and Luke hated it. The therapist came to our house and Luke started vomiting when she would come as a way to try and avoid interacting with her. It was awful. I asked the early intervention program for someone different and tried to get them to allow him to have speech therapy. They said no. So, I told them that we were going to be done. Looking back, now I know that his tantrums really were a big deal, and his lack of speech was a gigantic red flag but at the time I thought that the early intervention specialists and his pediatrician were the "experts" and if they didn't seem concerned then I shouldn't be, either. I will forever regret this.

For the next year I just kept trying to work on things with him on my own. I went to a different pediatrician and asked about Autism, but he assured me that because my son was so loving and affectionate that we didn't need to worry.

His tantrums got worse and worse and he still wasn't talking. Right before his third birthday I found a speech therapist on my own. She started working with him and he improved slightly. I also met a mom who had a son with Autism and she gently asked if we had considered that Luke might have Autism. I told her that I thought he did but everyone dismissed it. She said that I might want to pursue it further. We found a developmental specialist and finally received a diagnosis a few months later.

Miggy: Explain how Luke’s needs affect your day-to-day life?  

Heidi: Pretty much everything I do revolves around him and his therapy. Early intervention is so important for treating Autism and the amount and quality of intervention a child receives directly impacts future outcomes in life.

We live in a state where treatment for Autism is not required to be covered by insurance so we have to pay for it out of our own pocket.* Because it is not covered by insurance, there aren't a lot of Autism therapy options here. I used to drive 75 minutes each way to get him to therapy appointments. I have seriously spent hundreds of hours fighting denied insurance claims and our savings is gone because we have to pay for the majority of his treatment ourselves. (Our insurance will now pay for some speech and OT, but that was a very long process and they still routinely deny claims for it. His other therapies are still not covered at all.) Yes, we want to move to a state that does require insurance to cover Autism treatments but that just hasn't worked out yet.

On the other hand, we try to have as many "regular" life experiences as we can. We take Luke swimming and shopping and after he goes to bed we like to watch movies or a TV show together. Autism definitely influences everything we do but we try to not let it define everything, if that makes sense.                                                                                   

Miggy: What are the biggest worries you face for Luke?    

Heidi: I think a lot about his future. My biggest worry is the unknown. He has progressed a lot in the past year and there are some children who eventually lose their Autism diagnosis. I hold on to the hope that one day he might. I also have to face the reality that it is most likely that he won't. I don't know what the future holds for him but I want him to be happy and know that he is loved. I don't want him to be limited by his diagnosis.

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?

Heidi:  One thing that is a big issue for many children with Autism is pooping. It's a gross reality but we have to constantly monitor his poop schedule, the consistency, quantity, etc. I have deemed myself his official "poop doula" because I help him through his issues. (I apologize if this is TMI for anyone!) He is also an acutely picky eater (he eats less than ten foods total, none of which are vegetables or fruits, hence my "doula" status) and my husband and I joke a lot about this. Luke loves cheeseburgers but only from McDonalds and only if they are plain. There is no "wiping the condiments and onions off." If they were on there, Luke will know. My husband and I joke that we need to make sure that the cheeseburger has not even "witnessed mustard." We try to joke a lot about the exasperating aspects of raising a child with Autism because laughter really is the best medicine.

Miggy:  How can people best approach or respond to your child and your family? Considering your son doesn't have a visual condition, is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Heidi:  I know people say this a lot, but it's important to remember that you have no idea what other people are dealing with when you see a child who is acting out in public. I have been the meanie who silently judges the parent with the tantruming child and now I AM that parent. I think that the best thing someone can do is to ask HOW they can help (if appropriate) and to just be kind.

For example, my son is obsessed with the mechanics and buttons at the checkout stand in grocery stores and he wants to touch everything. Sometimes it's quite a circus to try and get items from the cart to the belt and keep him under control. One day, Luke was doing his usual "touch everything freak-out thing" and the cashier tried to distract him by asking "what's your name?"  When I told her that he couldn't talk, but that his name was Luke she realized that our situation wasn't typical and she asked what he would like to do. She let him push the button to use the scanning wand, type on the keypad, turn the belt on and off and scan a couple things. It was a small thing to her, but to me and my son it was anything but.

So often people don't know what to do so they don't do anything or just ignore us. I totally understand that. However, I want people to realize that being ignored by everyone your whole life is sad. People with Autism have feelings, too! I think it is a common misperception that having Autism means that someone doesn't have emotions but it is actually the opposite. I think that people with Autism sometimes just don't know how to process their emotions and get overwhelmed so they shut down and withdraw. They still need to feel loved, appreciated, validated, and accepted. They need to know that people care. :)

Miggy:  As autism is on the rise more and more children are being diagnosed and more and more parents are aware of the possibility that they may have a child with autism. Was this something you worried about before you had your son? And now that you have a son with autism have your views or fears changed?  Is there something you wish you could say to your pre-autism self or to other moms who may have this worry or fear that their child might have autism?   

Heidi: Be proactive. I cannot stress this enough. I said before that I will forever regret initially accepting the opinion from experts who said that nothing was amiss. The earlier you can get help for a child with Autism, the better. My son made so much progress once he started receiving intensive treatment. I would give anything to go back and get him help sooner.

I understand that the possibility of Autism is terrifying to a parent, but if your child has Autism it is what it is and the biggest factor in improving outcomes is early intervention. You will never regret getting your child diagnosed and getting him or her help. It is scary, but you can do it!
You also have to be an advocate for your child. If a situation is not working or the services you are receiving aren’t working, don’t back down. I should have continued to push for a better fit in therapy when my son was in early-intervention and I should have trusted my gut instead of just accepting what the “experts” said.

Miggy:  What is the biggest lesson you’ve learned since becoming Luke's mom?

Heidi:  I no longer fear Autism or other disabilities, but that was a lesson with a steep learning curve for me. So many people say to me "I could never have a child with Autism. I don't know how you do it" or "special kids go to special parents" and other things like that. To be honest, I don't appreciate those sentiments. I know that people mean well, but parents of children with special needs do it because they have no choice.
I often hear parents of special-needs children say that they wouldn't change their child's disability if given the option but that does not resonate with me, either. I don't know if some day I will feel differently, but I just feel like I need to say that it is okay to feel that way.

*I would like to share a little bit about Autism insurance coverage in Georgia. The world of insurance is a tricky, confusing, and complicated place. I think that people really don't understand this until they have to deal with it. In most states, treatment for Autism is covered just like most other problems (cancer, broken bones, hospitalizations, etc.) but in the few states that don't require insurance to cover it, they don't. Families are left with the impossible dilemma of figuring out how to get their children treatment. It is discouraging and sad and so, so wrong. Families have been trying to get Georgia to pass an "Autism Mandate" for insurance (a law saying that insurance is required to cover science-based Autism treatment) for several years. It has failed to pass for 6 years now. Basically, the Speaker of the Georgia House receives lots of campaign contributions from insurance companies and he keeps blocking the bill from being voted on. Here's a video about the girl, Ava, that the bill is named for and her family's experience with Autism.


Heidi, thank you so much for sharing your thoughts, feelings and most importantly, your Luke with us. What a handsome little guy! First, I'm so glad you talked about Luke's lack of a lot of symptoms, but the persistent few symptoms he did have that weren't improving.  Honestly I know that I would have assumed that if a child is affectionate and can make eye contact, then they must not be Autistic! Additionally, it's good to hear that even the "experts" aren't right all the time. I feel like this will really resonate with someone out there--listen to your gut, your instincts, that inner voice, whatever you want to call it!  So, so important. Lastly, I appreciate your honesty regarding Luke's condition and the questions of whether you would you change it if you had the chance... for a lot of us I think that is a very grey area and I agree that if you don't feel that way, it's totally OK.  Thanks again Heidi!

You know one thing Heidi shared with me is the fact that she's been reading my blog for a long time, but never really thought about emailing to participate in the spotlight because I've already featured several people with Autism.  I told Heidi that everyone's story is different, and everyone will have a unique perspective.  So please, I am still very much in need of participants and even if I've featured the condition your child has, remember you are unique and you will have something to share that no one else will!  So if you want to participate please email me at thislittlemiggy at gmail dot com!

Have a great weekend!

Wednesday, February 18, 2015

Toddler Messenger Bag Tutorial

So I used to make these bomb toddler messenger bags in my etsy shop. They're super cute and I love them, but I just don't have the time to make and sell them anymore.  However, I still get emails occasionally asking if I make them and so I thought I'd just do a tutorial for anyone who would like to make their own.  Now this isn't difficult to make, but can still take some time, I'd say give yourself at least 3 hours.  So here we go!

18"x13" outer fabric
18"x13" lining fabric
9"x10" outer fabric (for flap)
9x10 lining fabric (for flap)
5 1/2"x28"fabric  (strap--should match outer fabric)
5 1/2'x4 1/2" fabric (pocket)
2 4"-5" pieces sew on velcro 
sewing machine+iron

First we're going to start with the strap.  Instead of sewing the two sides together and then turning it inside out, I like to iron a 1/4 inseam on both long sides.  Then fold in half the long way until the sides match up, then iron down the seam and pin.  Now top stitch the open side closed, THEN top stitch the other side as well.  Strap is done.

Now gather your two bigger pieces of fabric for the main body of the bag.  Remember one fabric will be your outer fabric (should match the strap) and one will be your lining.  Fold each piece of fabric in half the long way and sew down both short sides to create a little pouch.  Do this for both pieces and iron your seams.

Now to create a little structure you're going to take the bottom corners of each bag, line them up so the seam is in the middle of the bottom of the bag (pretend there is a seam in the bottom of the bag and line them up).  Now measure the corner two inches wide and draw a line with pencil/tailors chalk and pin this corner together!  Do both corners on the outer fabric and lining. Now sew directly on that line and snip the corner off leaving about 1/4 seam allowance.  And now your bag has corners.  Exciting.

This next step is not 100% necessary, but it does add some nice structure as well as being visually pleasing. For the record, I always do this step. Now that you have corners you're going to take your iron and press 6 seams around your bag to create a box-type dimension.  See pictures.  The bag has a front and a back, so you'll do this on the right, left and bottom on both the front and back of the bag.  Again see pictures.  Make sure your iron well because you don't really need pins on this part, but you'll want tight seams. Now you're going to top stitch down each seam leaving a teeny-tiny seam allowance.  As you can see by my picture, I put the edge of the fabric in the middle of the presser foot on my sewing machine.  Now sew a straight line on all six sides, starting and stopping on each side and reversing at the beginning and end of each line so your stitch doesn't come undone.

When it's done your bag now has a nice shape to it that won't disappear in the wash or with crazy toddler usage.

Now take the small piece of fabric for the pocket and press a seam in on all 4 sides.  Now sew along one side (a long side).  Next pin this picket down on the lining of your fabric, with the one side you already sewed on top (and all the seam allowance underneath).  Now sew the other 3 sides to your lining, making sure you don't sew through both sides of your lining!

See... a lot of work goes into a little bag.

Now we're going to work on the closing flap.  Get your two smaller pieces of fabric and take the lining and put two sides of your velcro down.  Now I have put the velcro in different places--sometimes one on each side going vertically--this time I decided to just put them both along the bottom horizontally.  You'll want to make sure they're close to the bottom along the shorter side (I know this fabric is only 9"x10", so it's along the 9" side), but don't put them too close to the bottom to allow for a seam allowance + a little space.  Also the velcro should be on the right side of the fabric! Pin them down, and sew them on.

Now place your outer fabric on top of the lining with the velcro (right sides together--again, you should have sewn the velcro to the right side) and sew along the longer side, the bottom by the velcro, and back up the other longer side.  Leave the top completely open.

Before you flip the fabric right side out, clip the corners.  Then flip and press with iron.  Now top stitch around all 3 sides.  Again, not completely necessary, but if you top stitched the strap and body, you should really top stitch this as well or it will just look silly and your sewing friends will make fun of you.

Now you have to sew your coordinating velcro to the outer fabric.  For this part I like to put my opening flap in the top--push it down about an inch to simulate how it will be after it's all sewn together and then close the top onto the main pouch to get an idea where the velcro should go.  Next, just take your two velcro strips and pin them to the outside (i.e., the right side) of the outer fabric and sew those bad boys on.

OK! Almost done! Now you should have these 4 pieces. A strap, your outer pouch with velcro on the outside, your inner pouch with a pocket sewn on the right side of the fabric, and the closing flap with the two fabrics sewn together and velcro on the lining.

OK now to put everything together.  First you'll want to turn your outer fabric inside out (seams on the outside) and you're lining will be turned right-side out (seams on the inside).  First, take your outer fabric and place the strap inside, lining up the middle of the strap with the side seams.  Pin together.

Now take your lining and place it on the inside, lining up the side seams.  Make sure the pocket on the lining is on the opposite side of the velcro on the outer fabric.  Make sure that strap isn't twisted inside the bag! Pin in place (you may want to remove the pins holding the strap and re-pin to include the lining).

Lastly, take your flap and put the velcro and sewn edge side down, between the outer fabric and lining.  Make sure to place the flap on the pocket side of the bag and that the two lining sides of the fabric are touching and the two our sides of the fabric are touching.  This part can be confusing so read again and see picture below.

Now this is what it all should look like--all the raw edges lined up, that the strap and the flap are between the outer fabric and lining and then pin in place.  Leave a 3-4 inch gap marked with pins, because as you're going to sew around the top you need to leave an opening that you don't sew around.  Now sew a stitch all around the top of the bag, except for the 3-4 inch opening and give yourself a nice wide seam allowance.  It's also a good idea to use a basting stitch for this part in case you make a mistake and need to pick out the stitch.

Now take the bag and through the little opening you're going to flip everything inside out (actually right side out, but whatever.)

And you're bag will look like this.  Now is the time to inspect the bag and make sure the straps are lined up correctly and not twisted and that the flap is in the right position.  If you need to go back and fix anything now is the time!  Simply turn you bag inside out again, unpick the basting stitch and move it around.  (For this bag I had to fix the strap and it moved a little during sewing).

Now if everything looks good, take an iron and press the top of your bag and get a nice crisp edge around the top, then finally top stitch around the entire top of the bag and close that gap.  Again you want to make sure that top stitch is nice and close to the edge (very small seam allowance).  And you're done!  

Zuzu was a reluctant little model at first, but she came around. And while it's a little big for her now, she'll grow into it soon enough.  Size wise, I think this works best for 2-3 years old.  You can always make the strap longer or shorter if needed!

Cute right?
Feel free to email me with any questions!
Maybe next I'll do a tutorial on my play tents... remember those?

Also, as a disclaimer:  It is OK to freely use this pattern and make your own toddler bags.  Please do not sell pattern or bags made from pattern.

Monday, February 16, 2015

Would You, Could You?


Would you, could you (or better yet do you) shave your face?

If you've never heard of this practice perhaps you're thinking this is joke, gimmick or straight up whack.  Turns out this was a regular practice for a couple of gals by the name of Marilyn (Monroe) and Liz (Taylor).  And while celebrities are known to do some pretty crazy things, they also seem to be on the inner circle of trust when it comes to beauty secrets of the rich and themselves.

I actually heard about this more than a decade ago from a friend of mine.  She was telling me who smooth it makes you skin and that its the best exfoliator ever, she was saying this so matter of fact like it was no big deal and finally was like,  just shave your face already!  You can check out this post or this video if you need a little more convincing.  Here's the thing though... I still haven't shaved my face.  Although I will say perhaps it was the idea that I thought it was the same process as when a man shaves his face like Marilyn models above.  But if you clicked on that video you'll see there are special face razors for women that you do on a dray face.  For some reason that process just seems to make it a different game.  BUT there are women who shave old school style with a man's Gillette and a little shaving cream.  In addition to removing all facial hair apparently it acts like microdermabrasion and removes your top layer of dead skin leaving your face smooth as a baby's bottom.  Of course the claims that shaving any hair causes it to grow back thicker are continually shot down as an old wives tale... something I've always believed.

Part of me really, really wants to try it. The other part of me is like eh.  I'm not someone who freaks out about having fine little hairs on my face.  Even the longer ones around my sideburns and neck.  I asked my husband (who has no problem being honest with me) if it bothers him and he said not at all... he's never even thought about it. Perhaps my skin would be super smooth, but according to some dermatologists, if you have other exfoliating practices--such as a Clarisonic, which I have--then shaving your face isn't going to exfoliate any better.  And while some women claim facial shaving is the reason that men seem to age slower, other's debunk that myth with a little something called science.

So...would you?  I'm so curious to know if any of you have ever shaved your face? Was it a one time thing or a weekly practice? Is it something you rave about or keep to yourself? Is it one of those things that once you're in the club, you never go back? Or do you find this to be another ridiculous thing women do in the name of beauty that is completely unnecessary?  Dish.

Friday, February 13, 2015

Baby Steps

           So much I know, that things just don't grow if you don't bless them with your patience.  
                                                                                                                 --First Aid Kit

So if you don't follow me on IG, then you missed this awesomesauce video I posted of Lamp the other day with the following caption:

So much to say about this 11 second video... it has taken almost a year from standing independently to taking these first few steps.  Honestly I didn't worry or think about it too much because what could we do?  @brackdawg (B) on the other hand took matters into his own hands and fashioned a Tiny Time like crutch for her and suddenly she might as well be walking on water for the amazement and miracle it is for us to see. Sometimes I feel like I'm a pretty good mom for her, but I often find myself thinking @brackdawn was born to be her dad. And the icons on the cake is always that infectious giggle and light radiating like an atom bomb of love, ice cream, rainbows, and pixie dust.

To be clear those weren't her very first steps as she had been practicing for a couple of days, but you get a sense of how exciting it all is. Also, she wouldn't be taking these steps if it wasn't for her dad and his amazing crutch making skillz. You may remember he was also the one who invented her spoon (and now we have a fork) for her to eat all by herself with.  She literally went from being spoon fed everything or bending over and eating directly off her tray, to being able to feed herself overnight.  It was life changing.  The crutch could very well end up being a game changer as well, however unlike the spoon it will take a little more time to figure out. And when I said I didn't worry or think about it too much, that doesn't mean she (we) haven't been working to make this happen for a long time. This girl has done therapy every week since she was a few months old, at one point 3 times a week. Patience often sounds so passive, like sit back and wait and as long as you do it calmly, then you're being patient. In reality patience usually requires that you work your butt off to make shiz happen, and these few baby steps are the result of years of that kind of hard work.

My favorite thing about this video is the giggle and laugh at the end when she falls over because that is Lamp to a T. I'm not saying she never gets frustrated or grumpy she does--I don't like it when other people put her on a pedestal and I try not to perpetuate that myself--but she really does have a brightness about her I don't want to downplay either. As we all sat around and watched Zuzu take her first steps the week after her birthday, Lamp was cheering just as loudly as the rest of us. She was genuinely excited to watch her little sister take her first steps while never having done so herself. Minutes after those steps and feeling extra motivated, Lamp said it was her turn and she wanted to try walking as well.  So of course we got the brace on and helped her do her best, which to the untrained eye probably didn't look like much. B and I exchanged half smiley looks that conveyed both gratitude and grief, because you know... life. So yeah the giggle and girlish scream at the end really do say so much about who Lamp is. To clarify, I don't think she is choosing to be happy, I just think she is happy. She was born this way and like other natural gifts and talents it's not about lavishing praise on her for a trait I  believe she was simply blessed with, but rather about feeling gratitude for the gift in the first place. Either way, it is a wonderful energy to be around and part of the reason I don't worry about her too much.  You know, too much.  

You guys, the spotlight has been like crickets for a while now... this is probably the longest I've gone with very few emails and leads so if you know anyone who would make a great spotlight have them email me.  Or if you would like to participate please email me at thislittlemiggy at gmail dot com.  I love the spotlight and have always been so, so grateful for each and every person who has made it possible.  So thank you and lets get this thing back on track!

I hope you have a great weekend!