Friday, June 24, 2016

Special Needs Spotlight || "L"


Hello! I am a former teacher turned stay at home mom to three boys (just turned 5 , just turned 3 and almost 11 months). My oldest son, L, has Childhood Apraxia of Speech, sensory processing disorder and a delay in communication skills, adaptive skills, and fine motor skills. He is  sweet, curious, active, and very determined to figure out how everything works. My middle son, S, is more of a book lover who enjoys dirt and making pretend food. The baby, O, is silly, cuddly, and always wanting to do what his brothers are doing. We have a wonderful home filled with cats, kids, books, messes and love. My husband loves his sons so much and works very hard to support us all.

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Miggy: Welcome Tenille and thank you so much for being here today. You have 3 boys with your oldest having special needs. Let’s start at the beginning, when did you first start to notice red flags with L and how long from those first red flags until an actual diagnosis? Do you remember how you felt when you finally got a diagnosis? Can you compare those first thoughts and feelings with how you feel now?

Tenille: L was always a bit of a difficult baby, he took longer to soothe and really needed us to stick to a routine. When he was 18 months old we really noticed that he was not talking (he only said mama). We made a referral for early intervention and he qualified for speech only. Fast forward to this past November, L had been in speech continuously and was also in a private preschool twice a week but I still felt that he was not making the progress he should in speech and that he had more going on than just a speech disorder. We then had a private speech eval and her report confirmed Childhood Apraxia of Speech, which is a neurological speech disorder. Basically his brain and mouth don't work well together to allow him to produce intelligible speech. He knows what he wants to say but has a hard time saying it. She also agreed with me that there were more issues at work and so I asked the school district to do a full evaluation of L. By January of this year we found out that he has severe sensory processing disorder and a delay in communication, fine motor skills, and adaptive skills.

When the evaluator shared the diagnosis I remember feeling relieved. Finally, I knew what was causing so much difficulty for my son and now we could get more help. It also made me feel better because L always struggled with behavior and I knew school would be a challenge with all of his issue but now he would be getting help. I think I have always known there were sensory issues with my son and after having two more children it was even more obvious that his struggles were so different than his brothers'.

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

Tenille: L has multiple speech therapy sessions a week and we now have OT too. Plus he attends preschool twice a week (half days). So a big part of our routine revolves around getting him to these services. But in a smaller way much of our day revolves around making sure he has had enough of the type of sensory activities he needs to stay regulated as well as working on speech activities. L can be super helpful and calm and enjoyable around the house and even out in public much of the time now. But I always have to be on the look out for signs that he is becoming overstimulated or overwhelmed. When he is, he can meltdown but often he just becomes super active and physically out of control or he runs. It can be tough to manage all of that plus caring for my two other boys and the normal household stuff. But L and I are learning more and more each day to manage his needs and still have time for things like parks and playgroups and camping.

Miggy: What are the biggest worries you face for your son? Conversely, what are your hopes and dreams for your son?

Tenille: I worry that he will always struggle to be understood by others and that it will isolate him and cause depression and anxiety. As a former teacher I worry so much about what school will be like for him. I worry that he could hate learning and come to feel that he is a "bad boy" because he doesn't fit the mold of the ideal student.

I just want him to be proud of himself and the things he excels at. I want him to be a kind person who helps make the world a  better place and who feels a sense of accomplishment in what he does.

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?  

Tenille: Most of our silly situations come from the fact that we have three boys and are not always directly related to my L's special needs. But there have been times that his speech disorder makes for interesting conversations. One time in particular, all the grandparents were at our house and L was telling us a story about something that none of us could understand. He kept repeating a word that sounded like ants but we could not figure out what he meant or why he would be talking about ants. Finally he got onto the floor and started crawling around and we realized he was, indeed, talking about ants. He was trying to tell us he saw ants in the kitchen. L has gotten pretty good at charades!

Miggy: How can people best approach or respond to your son? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Tenille: L's special needs are not super obvious but he does have a hard time communicating with other kids at parks and such. He also can make spitting sounds and play chase too much because he is not sure how to play with others. I just hope that kids will come tell me if they don't like what he is doing so we can talk to them about his differences and so L can learn better ways to play. Mostly I just hope parents talk to their kids about how different everyone can be and yet still have fun together. Also I really hope more and more people are aware that most kids are not trying to be bad or lack discipline. So many kids have other needs and issues that people may not know about. Kindness can go a long way.

Miggy: If you could say something to the mom who just starting on this journey of special needs, what would you say? What would you say to yourself if you could go back in time?    

Tenille: I would say that it’s OK to go bath and forth between feeling overwhelmed and scared and then hopeful and determined. That its OK to read all you can and do all you can and then to sometimes take a step back and just be a mom, not a therapist. And most of all I would have told myself that having more kids would seem crazy but was really the best decision ever!

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

Tenille: I have learned to be more understanding and less judgmental. As a teacher I thought I knew so much about kids, but being a mom, especially to a special needs kid, has really taught me that there is no one right way, there are hundreds of ways to make things work and that each family, each day, each situation might need something different. Mostly I have learned that kindness is the best thing anyone can give, to themselves and to others.

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I love that you talked about kindness so much Tenille. There have been some very sad stories in the news lately where parents attack other parents for not doing a "better job" or not "watching their kids close enough" and if there's anything I've learned over the years it's that none of us are ever in a position to judge. You really just never know. And even with much more benign issues like behavior and tantrums we are so much better off giving smiles and words of encouragement rather than judgmental stares or shaking heads.  And yes I too hope that more and more parents will take the opportunity to talk to their kid about how we're all different. I know these conversations won't completely alleviate curious questions and stares from young children, but it sure helps to have those conversations early! Thanks so much for sharing your journey and your sweet son L with us today. Best of luck to your sweet family.  

As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com. Have a fantastic weekend!

XO,
Miggy
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Wednesday, June 22, 2016

Easy Kid Sewing Project: Boo-Boo Bags


A few years ago a friend of mine gifted us some boo-boo bags. She explained, "These are genius. Just keep them in the freezer and whenever your kid gets a scrape or a bump have them go get a boo-boo bag to put on their owie. Works like a charm." She was right!

Lets be honest, most bumps, bruises and scrapes you just can't do anything about. A little band-aid, some Neosporin and thats it. But there are so many little boo-boo's that don't even necessitate that! Enter the boo-boo bag. When they bonk their head, scratch their leg, stub their toe, (barely) scrape their knee, we simply grab a boo-boo bag to place on their injury and recovery is on the way.

It's genius because it gives kids something to do, something proactive as opposed to the classic parental and little league coach advice to simply shake it off. Second, it's cold but not too cold which is perfect for kids. Icing an injury can be tough even for adults, and for kids, it's nearly impossible. The boo-boo bag is just the right amount of cold. Also, as long as you use 100% cotton or other natural fibers, these same bags can be throw in the microwave for a few minutes to be alternately used at heat bags. I'm telling you, we use them for both all the time!

The steps are predictably easy-peasy:
1. Select your fabric.
2. Cut 2 pieces of each fabric approximately 9"x4.5"(you can make them bigger or smaller)
3. Place fabric pieces right sides together and sew a 1/4" seam around both long sides and one short side. Make sure to leave one short side open. Cut off corners and turn inside out.
4. Fill bags with either rice, wheat berries or some other grain. We used wheat berries this time, but have used rice in the past.
5. Hand sew short side closed.

The kids can be as involved as they want to be in making boo-boo bags--PSP helped with pinning the fabric and filling the bags, but Lamp wanted to do as much as possible. She sat on my lap while I sewed, filled the bags with the wheat berries and even did a number of hand foot stitches on her own while I held the bag. So great!


Summer is the perfect time to make yourself some boo-boo bags--an easy afternoon activity and a solution to all those summer-time scraped knees and bruises. Happy sewing!

XO,
Miggy

Friday, June 17, 2016

Spotlight Revisited || Selena + Michael


Hey you guys! Since I don’t have a current spotlight I’d like to post another oldie but a goodie. I have so many favorites, and this one is up there. Trust me--worth the read. Original post here. Also, here’s a fun little clip to start your Friday off right! Have a great weekend!

XO--Migs
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Hi Friends, Miggy here. So my church isn't one of those churches where you raise your hand and yell Amen! but that's exactly how I felt while reading through today's spotlight with Isabelle and her husband Pedro who adopted two children with HIV. This spotlight is full of education and truth telling. And while HIV isn't something that typically falls under the term of "special needs" it is certainly outside the parenting norm and something we desperately need an updated education about. Because of the nature of today's post (and you'll understand more as you read through) Isabelle has chosen to keep her family's identity completely private, thus all the names have been changed and there are no family pictures. Enjoy.

Hello everyone! My name is Isabelle, and my husband Pedro and I are the proud parents of two amazing children, Selena (13) and Michael (10). Both of our children were born in Ukraine and came to us through the miracle of adoption. We met Selena in November 2013 and brought her home in late December, just two days before Christmas. Less than a year later God called us back to Ukraine to adopt Michael. We met Michael in early December 2014, had court the day after Christmas, and came home at the end of January 2015. We’re now in the midst of post-adoption adjustment as we all get used to life as a family of four. Despite our multicultural origins – Pedro is from Guatamala, both kids are from Ukraine, and I’m from rural VA – we’re mostly a typical, fun-loving American family. However, like all families, we have our own unique challenges. In addition to the challenges our children face because of their traumatic pasts, both of our children are living with HIV.

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Miggy:  Isabelle thank you so much for being with us today and for sharing your family’s story. I am so grateful that you emailed because I think this is a very important topic that needs more education and awareness. You have 2 adopted children both living with HIV. Can you take us back to the beginning of this process and your decision to adopt children with this disease? Was it an intentional choice to adopt children with HIV and if so, why?

Isabelle:  From the time I was a small child, I knew that someday I wanted to adopt. When Pedro and I got married, we began looking into the foster-to-adopt process. But despite our best efforts, we had more doors slammed in our faces than I can count. After hearing “no” on every side, we put kids and adoption on hold to focus on our careers, figuring God would work things out in his timing.

Several years later, I felt God calling me to orphan ministry. Because our past adoption efforts had not panned out, I decided to look for ways other than adoption that I could help orphans. I began volunteer advocacy work with Reece’s Rainbow, an organization that promotes and raises money for adoption of international orphans with special developmental or medical needs. In the course of that advocacy, I came across a photo of a beautiful brown-eyed little girl and her younger brother. I knew right away, in a way that I cannot even begin to explain, that these children were supposed to be our children.  I showed the photo to Pedro, and he had the same reaction. At that time, we had no idea where these children were, but we knew we needed to do everything we could to adopt them. We asked the necessary questions, and just a few weeks after seeing their photo for the first time, we committed to adopt both children. Eight months later, we came home with Selena, our spunky, friendly, funny, exuberant, inspiring daughter. Unfortunately, due to a tragic circumstance related to the intricacies of the Ukrainian adoption process, we were not able to adopt Selena’s younger brother, but we are so blessed by Selena’s presence in our family and so glad God led us to her.

Selena’s diagnosis of HIV was truly an afterthought to us and had no bearing either way on our choice to adopt her. When we first saw her picture, we had no idea what her special need was, and it didn’t matter. We of course learned that she had HIV before we made the decision to pursue adoption, but I can honestly say that her diagnosis played no role.

That said, we went into the process eyes wide open. We did our research about HIV before committing. At the time, Pedro worked with a man who is living with HIV, and we took him out to dinner so we could have a frank discussion with him about what it means to live with HIV and what it might mean for us to parent a child with HIV. We also had long discussions with my mom, who was a nurse during the beginning of the AIDS epidemic in the 1980s. We read everything we could find about the care and longterm prognosis of people with HIV. (Project Hopeful, is a great resource.) We talked to the international adoption specialist at our local international adoption clinic. We called our insurance company to make sure we had adequate coverage for HIV medications. We did everything we could think of to prepare for the reality of parenting a child with HIV. But not once did we consider that we shouldn’t go through with it because of Selena’s diagnosis. We knew she was ours, and that was all we needed to worry about.

Our path to adoption of Michael was a bit different since we went into his adoption already knowing exactly what parenting a child with HIV entails. Early on, Selena requested that, if we adopted again, she wanted her new sibling to also have HIV. When we felt God calling us for another adoption, we prayed daily over the children on Reece’s Rainbow who have HIV. Eventually we felt our hearts pulled to Michael. When we found out that he is from the same Ukrainian city as Selena, we knew this was the little boy God wanted us to call our own. Eight months after coming home with Selena, we committed to adopt Michael, and we came home with him just a few months after that. In Michael’s case, I guess you could say we chose to adopt him in part because of his HIV. Rather than his diagnosis being a deterrent to us, his diagnosis is what originally brought him to our attention!


Miggy: HIV has changed a lot of our lifetime. It went from being a death sentence and extremely feared in the 80's to being something that people are living with and managing quite well. But to be honest, I still don't know a lot about the management, life expectancy and day-to-day challenges of HIV. Can you bring us up to date on living with HIV in America today, including HIV vs. AIDS?  

Isabelle: When people hear about "HIV" today, the images that come to mind are tragic photos, most of which were taken in the 1980s, of deathly ill AIDS patients lying in hospital beds. But nothing could be further from the truth. The modern face of HIV instead looks like the faces of my children: healthy, happy, joyful. A diagnosis of HIV means only that a person carries the Human Immunodeficiency Virus (HIV) in their blood. It is a virus notoriously good at hiding out in the body. Even if only a single virus is left in a patient's body, in the absence of medication, that single virus will reproduce and come back with a vengeance, thus the necessity of daily, lifelong medication. AIDS, by contrast, is what happens when the virus is allowed to reproduce at will and attack the patient's immune system. It is a syndrome, the Acquired Immune Deficiency Syndrome (AIDS) to be exact, which occurs when the virus interferes with the immune system enough that the patient starts getting sick from every infection or illness going around. When the immune system is so weak it cannot fight off other viruses or infections, the patient very well could die. But because AIDS is an acquired syndrome tied directly to the number of HIV living in a person's blood, it is a fully reversible condition. If a patient suffering from AIDS is able to begin taking medication and reduces the number of viruses in their blood, their immune system will rebound, coming back just as healthy as before the AIDS incident, making that patient a run-of-the-mill HIV patient once again. That's not to say it's a good idea for an HIV patient to go off meds and deteriorate into AIDS. Many of the infections and diseases people get when their immune systems are so weak are incredibly dangerous infections that often have lasting effects on a patient's health, completely separate from the HIV/AIDS diagnosis. But as treatment of HIV has improved drastically over the years, so has AIDS treatment. In America today, HIV is a manageable chronic condition, and AIDS is a serious but treatable illness.

Medically, living with HIV in America today is easy. To be honest, I deal with chronic migraines, and I have more trouble managing my migraines than either of our children have with their HIV. For Americans living with HIV today, the diagnosis mainly means taking medicine, usually just one pill once a day, and seeing an infectious disease doctor three times a month to check bloodwork and liver function. Selena is down to one pill a day, after taking 11 pills a day in Ukraine, and she couldn’t be happier about it. On her 13th birthday, she finally finished her medications for nutritional deficiencies and was left with just her single HIV pill to take every day. My, what a day of celebration that was!

As long as people living with HIV take their medication every day, the HIV diagnosis has very little impact on daily life. The goal of any patient with HIV is to become “undetectable,” meaning they have so little HIV in their blood as to render the HIV undetectable to even the best of modern tests. For the average HIV patient, simply taking medication every day without ever missing a dose is all it takes to become undetectable or close to it. When the level of HIV in the blood is that low, the HIV diagnosis has absolutely no effect on a person’s life expectancy. What’s more, thanks to the miracle of modern medicine and the huge strides that have been made in reproductive treatments available to individuals with HIV, Selena can someday bear and give birth to children without fear of passing on her HIV to them, and Michael can someday father children without giving HIV to his children or to their mother.

When a person is taking their HIV medication as prescribed, the chance of accidental transmission of HIV to another person is virtually eliminated. In fact, in the entire history of HIV, there has never been a case of accidental transmission of HIV within a normal household setting. In other words, because my children are on medication and understand the importance of taking that medication, and because they understand the risky behaviors they must avoid (namely unsafe intercourse, intravenous drug use, and breastfeeding), they will not ever be negatively affected by their diagnosis beyond needing to take daily medication, and they do not pose a risk to the people around them.


When I think about what all this means for my children – what modern medications have made possible in terms of HIV therapy – I am overjoyed. A disease that would have been a death sentence to them even 15 years ago is now little more than an annoyance. What a miracle!

Unfortunately, good news stories don’t usually make good headlines, and many Americans today are woefully ignorant of the strides that have been made in HIV therapy. Many people refuse to believe that someone living with HIV is not a threat to their own personal health. In America, the stigma faced by people with HIV today is only marginally better than it was in the 1980s and 90s, when HIV was a death sentence.

Miggy: In your email you talked about the stigma your children lived with in their home countries. How does that differ from America? More importantly how have those stigmas and the social scrutiny impacted your children and are you doing anything to help them overcome/deal with those painful memories.

Isabelle:  For people living with HIV in Ukraine, you can ignore everything I answered to the last question. All four of my children’s birth parents died from AIDS. In Ukraine, treatment advances don’t exist, and HIV/AIDS still kills. In Ukraine, people have a very good reason to be petrified of HIV.

Even in America, HIV medication is extremely expensive. Thankfully, America provides numerous supportive programs to help people with HIV afford their medication. (Between our insurance and available co-pay assistance programs, we pay nothing for our children’s medications.) This couldn’t be further from the truth in Ukraine. In May, NPR presented a focus story about the poor state of HIV therapy in Ukraine: Corruption in the Ukraine Robs HIV Patients of Crucial Medicine. The gist of the situation is this: corruption within the Ukrainian medical system takes medication costs that would already be prohibitively expensive and puts them far out of reach of most patients. On top of that, the HIV/AIDS epidemic in Ukraine is one of the fastest growing in the world. In America, the stigma faced by people with HIV is based solely on ignorance. In Ukraine, that stigma is based on ignorance combined with pure terror.

Selena has memories of being barred from interacting with “healthy” kids. Even though HIV isn’t found in saliva, the silverware and bowls for children with HIV were marked with red dots on the bottom, and the children with HIV were only given those chipped and broken tableware and silverware items after they were too badly damaged to be used by the healthy children. Selena has memories of friends abandoning her when they found out about her diagnosis and teachers ignore her because of her status. When Michael’s birth mother passed away from AIDS when he was a toddler, Michael was placed in an orphanage for children with severe mental and physical handicaps, even though HIV is his only “handicap.” The orphanage workers never explained why he had to live by the same restrictions as children who couldn’t walk or talk. Despite the fact that his HIV level was almost undetectable even while in Ukraine, he wasn’t allowed to play any sports for fear he might infect a teammate, which is virtually impossible when a person’s viral load is undetectable.

All of this is in my children’s past, and these viewpoints inform how they view their diagnosis today. The culture of fear, shame, and paranoia that surrounds HIV in Ukraine is extreme. It's a daily struggle to teach them that their status does not define who they are, what they can do, or who they can interact with. Even in America, the stigma surrounding HIV is such that many families with children living with HIV, including our family, choose to be non-disclosing, meaning we have made a choice that our children's status will only be disclosed to those whom we must tell by law. Disclosure vs. non-disclosure is a huge issue in the HIV community, and strong feelings fly on both sides of the issue. After much thought and prayer, non-disclosure is where my family has landed.

Not a day goes by that I am not grateful we made the decision to stay silent about the exact nature of Selena’s special need during our pre-adoption process. While I don't think she would face quite the level of stigma here in America that she faced in Ukraine, it has been amazing to see her relax and grow, confident that people are interacting with her for who she is rather than rejecting her because of a virus that happens to live in her blood. Even after less than a month home, Michael too is already showing the benefits of finally being accepted for who he is – an energetic and rambunctious ball of fun – rather than always being stifled because of fears related to his diagnosis.

That said, it is admittedly quite difficult to teach Selena and Michael that their diagnosis is nothing to be ashamed of while also explaining that only our doctors and closest family members know about it. I’m still not sure I’ve figure out quite how to walk this fine line. It’s something I pray about and think about on a regular basis. Because the stigma surrounding HIV in America is based solely on ignorance, I often feel that nothing will change unless families like ours take steps to educate those around us. But then I remember all my kids faced in the past because of their diagnosis and all of the struggles they still face simply because they are adopted. Perhaps they have enough to deal with by being international adoptees. Perhaps their priority right now should be healing from the numerous traumas locked away in their pasts, both those related to HIV and those that come simply from being orphans. When I’m being honest with myself, I have to recognize that they are dealing with enough; they do not need the added burden of educating everyone they meet.

Miggy: In addition to being HIV positive, your children were also adopted at an older age. How have your children and you adjusted to this? What would you like everyone to know about adoption and especially the adoption of older children as I believe there are some stigma's attached to that as well?

Isabelle:  Adoption is only possible because of great loss. My gain – the blessing of two amazing children – was only possible because those same two children experienced more trauma, grief, and heartache than most people experience in their entire lifetimes. To ignore that loss is to ignore the incredible challenges my children must overcome to fully accept me as their mother.

My biggest advice to anyone considering adoption, especially adoption of an older child, is to go into it knowing about the worst case scenarios and being determined to stick to your commitment, to stay with your child, even if your own adoption experience ends up mimicking one of those worst case scenarios. Adoption is hard, REALLY hard. The adjustment period post adoption, which usually lasts about a year but can last much longer, feels like a never-ending slog through someone shredding your heart and stomping on your emotions every single day. We’re still very early in Michael’s adjustment to life at home. While he’s doing extremely well considering his brief time home, there are still days when this raw pain is my reality.

The deaths of both parents do terrible things to children. Institutionalized settings do terrible things to children. Loss and grief and pain and culture shock do terrible things to children. My kids are dealing with all that and more. Our parenting style looks nothing like a typical American parent’s parenting style. We are constantly hunting for the underlying cause, the trauma trigger causing a meltdown or the traumaversary (what adoptive parents call the anniversary of a trauma) that is coming up and causing one child to completely lose it. A discipline episode in our house is never about the misdeed alone. It is always about so much more because misbehavior from our kids always means so much more than the immediate action. Pedro and I are constantly reminding ourselves that we cannot react to misbehavior; we must respond: with love, with kindness, with understanding. Only when we effectively practice therapeutic parenting, day in and day out, even when we don’t want to – only then can our kids begin to heal the gaping wounds in their hearts.

All that said, we are incredibly blessed by both of our children. They are doing amazingly well. They are two of the strongest, most resilient people I know, and I admire them both immensely. In Ukraine, children 10 and older must consent to being adopted. Both our kids had to stand in court and face cross examination about why they wanted to be adopted. I couldn’t have done that when I was 10 or when I was 12. At their ages, I certainly couldn’t have faced life in a foreign country, with a family that didn’t speak my language and with parents I barely knew. Selena and Michael have done all those things. They have earned my admiration.

Now that they are both home, they are thriving. They finally have people in their lives to care for them. Selena is doing well in school for the first time in her life. She gladly tells anyone who will listen that she was “stupid” in Ukraine, but in America, because she has parents, she is now “smart.” (So smart that she has made the honor roll every quarter this school year!) Michael is already starting to grow and heal. He is gradually learning how to ask us to fill his needs (what a typical child does) rather than manipulating us to get what he wants (what a traumatized child does). His temper tantrums have already reduced in frequency and duration. Selena and Michael are both learning about God, learning what it means to be in a family, learning what it means to have people who love you even when you don’t love yourself. It’s an incredible experience to watch them grow, learn, and heal. Even with all the bumps in the road, I thank God every day for the gift of my children. I am so blessed.


Miggy:  What are the biggest worries you face for your children?

Isabelle:  Regarding HIV, I worry their diagnosis will cost them friendships and relationships. Even though they are not required to tell anyone other than doctors and relationship partners, these sorts of things have a way of getting out. I worry that the culture of stigma and rejection surrounding HIV in America will never change and that my children will suffer because of it.

As real as those worries are, my bigger worries are for their long-term emotional health and wellbeing. The statistics regarding the long-term success of adopted children who were older at the time of their adoption are not always encouraging. Every time I think about what could happen to them in the future, I am more determined to do everything I can for them now: to show them my love is unconditional, to teach them how to handle anger and fear, to provide them examples of healthy relationships, to help them heal from the traumas in their past. I want my children to be emotionally healthy individuals, and in order for that to happen, I have to do the never-ending work of therapeutic parenting. Their healing occurs one moment at a time as Pedro and I again and again and again choose to respond therapeutically to our children, rather than reacting instinctually.


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?

Isabelle:  Selena is blessed with beautiful olive-colored skin that perfectly matches Pedro’s Latino skin tone, and her facial structure looks very much like mine. Michael also has Pedro’s dark coloring. When people see us together, they typically have no doubt that both kids are our biological children… except that I am only 15 years older than Selena and look even younger than that. Add to that the fact that Pedro is over a decade older than I am, and it makes for some awkward age possibilities. The double-takes we get are quite hilarious! We can almost see the mental math calculations as they occur, followed by puzzled and shocked looks when the ages just don’t add up. If the person we’re meeting is someone who genuinely seems interested or is someone we will see again, I will take the time to explain that we are an adoptive family. But when this happens in a superficial setting, I usually chuckle to myself and walk away.


Miggy:  How can people best approach or respond to your children in regards to them being adopted? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Isabelle: When people find out our children are adopted, the most common response is that they are “so lucky” to be adopted. Every time I hear this, I cringe. I know that this statement is made with the best of intentions, but it is incredibly hurtful to an adopted child. My children are not “lucky” to be adopted. If they were truly lucky, their biological parents would still be alive, and they would be living in their families of origin. If they were truly lucky, their adoptions would not have been necessary. Calling adopted children “lucky” to be adopted ignores the incredible trauma they have experienced and makes light of the very real struggles they face in learning how to handle life in a new family, new country, and new culture. Just once, I wish someone would instead turn to me and tell me how lucky I am to have them, for I am truly blessed to call them my children. Calling me lucky is much closer to the truth.


Miggy:  If you could say something to a family considering adopting children with HIV, or another family who has children with HIV what would you say?   What would you say to yourself if you could go back in time?

Isabelle:  Don’t be afraid! Thanks to modern medicine, HIV is such a minor concern. Be diligent and do what needs to be done to make sure your child gets the best possible care, but beyond that, don’t sweat the HIV diagnosis. Honestly, if I had it to do over again, I would take at least half of the pre-adoption time I spent doing HIV-related research and instead spend that time working through the training materials recommended by our social worker. The “adoption” part of adopting a child with HIV is much more difficult than the “HIV” part, and pre-adoption preparation is vital to surviving those first few weeks and months with a grieving and traumatized child.

But most of all, I would tell myself to prepare to be amazed. My children have taught me so much about perseverance and determination, about strength and loyalty. I love them fiercely, more intensely than I ever thought it possible to love another human being. I would give anything for them, would do anything for them. They are my heroes.

Miggy:  What is the biggest lesson you’ve learned since becoming a mother to HIV positive children?

Isabelle:  No person is ever defined by one thing, even if that one thing is something others would view as paramount to a person’s identity. I saw the way my children were treated in Ukraine because of HIV, where the HIV label was all others could see. I see the way they are treated here, where very few know about their diagnosis. They are the same children, yet the way they are viewed is drastically different. Take away the defining characteristic of their diagnosis, and people accept them for who they are: strong, resilient, incredible, fun-loving children. I have learned that no one is as bad as their worst aspect, nor as good as their best. We must not judge someone harshly because of their low points or praise someone solely because of their high points. Everyone is a unique conglomeration of good and bad. We must look at the whole person rather than jumping to conclusions about a person’s worth or identity.


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Isabelle, where do I start?  How about "No person is ever defined by one thing..." Amen!  Whether that is religion, sexual orientation, disability, gender or HIV status that is a truth everyone can agree upon. No one wants to be constantly shoved into a tiny box with a giant label feeling trapped by one small part of their entire identity. Thank you for giving us such a great overview of what it's like managing HIV today. I had no idea that it was possible for an HIV positive mom not to give HIV to her baby, or for an HIV positive person not to spread it to their partner.  Yes, so much education and awareness needs to be spread about HIV.  Additionally I love everything you said about adoption--yes you are indeed a lucky mom.  So much truth telling in here, I know I'm going to read this again and again.  Thanks so much Isabelle and so much love to you and your amazing family.  

Can I get an AMEN everyone?  Amazing right?  Again, if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.  

Have such a great weekend!  
XO Miggy

Thursday, June 16, 2016

Something You Can Do Today



Orlando.
Aurora.
Sandy Hook.
San Bernnardino.

ENOUGH.

I'm not here to debate or give talking points. I'm not here to convince anyone of what to do. BUT I do want you to know that I support the Second Amendment AND gun law reform. You can do both! These things are not mutually exclusive.

If you also believe that we need common sense gun laws--background checks for every person who purchases a gun + making it illegal for a terrorist or someone who has committed a hate crime to purchase a gun--then THIS IS WHAT YOU CAN DO TODAY:

Text DISARM HATE to 64433 and you will be connected with your state Senator! I did it today and I can't tell you how exciting it felt to finally feel like I could do SOMETHING. Or you can call the capitol hill switchboard at (202) 224-3121 to get a hold of your state representative.

As you probably know Connecticut Senator Chris Murphy just ended a 15 hour filibuster and on the table right now our Senators are voting for two primary legislative measures: universal background checks, or closing the "gun-show loophole" and the prevention of suspected terrorists from buying firearms. Which is why it is so important to call your senator today!

If you're not sure about all these things here are some great videos to watch.

End of filibuster remarks
President Obama: I don't want to take your guns away



illustration

Friday, June 10, 2016

Special Needs Spotlight || Esmé


I am Hillary. I’m a lot of things: a PhD, a writer, a non-profit founder, a mixer of oddball cocktails. But most importantly I am the mom of a ridiculously fun, goofy, determined, and super cute five-year-old girl named Esmé. Esmé is my best buddy, my muse, and my teacher. Esmé is also medically-fragile, severely developmentally-delayed, and a bit of a scientific mystery. When I am not car dancing with Esmé, hitting the boxing gym, or coordinating Esmé’s schedule, I am writing about her and working to raise money for medical research through the Cute Syndrome Foundation.
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Miggy: Hi Hillary! I'm so happy to have you here today, sharing your sweet Esmé with all of us. Let's start at the beginning, can you take me back to the day you knew Esmé would have special needs? Was it during pregnancy, shortly after birth or sometime later? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Hillary: Hello Miggy! Thanks so much for asking me to join you on This Little Miggy today. This is going to be super fun! I always struggle with the question about how and when we understood that Esmé had special needs. In our case the process of understanding Esmé’s differences has been more of a gradual becoming than a single discovery. It is so complicated that I wrote a short book about it a year ago. Since we are still learning things about Esmé’s conditions, I’ll probably have to write another one soon!
The non-book-length answer is that we had some indication at our 20-week ultrasound that our daughter might have some medical differences, but our amniocentesis did not detect any genetic disorder. Then when she was born Esmé did not breathe well and she was very limp. She was immediately transferred to the NICU. When she was 3 months old she had a medical emergency that almost claimed her life—the subject of my second short book. Her seizures started several months after that. The extent of her developmental delays became clearer as she missed more and more milestones.
How did I feel about all of it? Honestly it all had the effect of making me feel like the ground kept shifting under my feet. In many ways it still feels that way…I’m just more comfortable making my home on the shifting ground now.


Miggy: I know that  Esmé has multiple diagnoses, can you first tell us a little about the process of getting her diagnosed--how long from first red flags to actual diagnosis? And can you explain in more detail what  Esmé’s needs are and how they affect your day-to-day life?  
Hillary: Ok, you ready? I’m going to answer by not answering again. So sorry, but this is how we roll. Esmé isn’t exactly diagnosed in the traditional sense. To date we know that she has four separate genetic mutations on four separate genes. The first, PCDH19, was discovered just before Esmé’s second birthday. The second, SCN8A, was discovered about two years later. The last two we’ve known about for around a year. What we do not know is which of these mutations causes which (if any) of her symptoms. Her genetic mutations are so mysterious that there are several cutting-edge genetic researchers around the world working unbelievably hard to understand how all of this fits together. So, basically Esmé is expanding scientific knowledge constantly just by being such an enigma.
Daily life with Esmé is the way I would imagine it would be living with a little elven creature that you stole from the woods—she is difficult to understand, fearless, persistent, impish, and oh-so-fragile. She is five-years-old, but the size of a tall, skinny two-year-old. She is functionally non-verbal but is highly expressive, and she can read. She does not walk but she gets into everything—crawling, rolling, and attempted climbing. She is entirely tube fed—save for ice cream, which she will eat by mouth in small amounts if it is on a cone. She also has repeated infections, kidney troubles, epilepsy, severely low-tone, and a movement disorder. And regularly she gets so mad that she holds her breath, turns blue, passes out, and has a seizure.
                                                                                                      
Miggy: What are the biggest worries you face for your daughter? Conversely, what are your hopes and dreams for her?    
Hillary: Everything. On both counts.
I suppose most of all I worry about and hope for a strong community for her. Kids like Esmé need people who show up for them in all sorts of ways—and for the long haul. I feel like it is my job to surround Esmé with people who show up. In some ways this has been really easy. She has a ton of people following her and cheering her on. Everyone in her medical care team is beyond exceptional. Everyone who works with Esmé adores her. The day-to-day hands-on care stuff has been harder. There are very few people who can take care of her for even a few hours. And this causes a huge amount of anxiety for me as I navigate day-to-day life, but also as I worry about her future. My deepest hope for Esmé is that she will have a deep bench of people who know how to care for her and love her in the way she deserves. Beyond that I just want her to be herself.


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?  
Hillary: I love this question! I’m right there with you on the finding humor in all of this. One of my favorite posts is one I wrote about the odd things I’ve said in the grocery store that people think are jokes—but aren’t. I find myself saying and doing things that completely confuse people all the time. Most of the best of them have to do with her feeding tube, like when I’m sucking on the end of a syringe attached to a tube that disappears under her shirt saying, “Give maman your burps!”

Miggy: Having a daughter with a wheelchair can certainly is like shining a bright "I'm different!" spotlight on them and it can often be difficult to deal with this spotlight everywhere you go. Therefore, how can people best approach or respond to  Esmé? Is there something you wish other people knew so as to avoid awkward or hurtful situations and simply for the sake of education.
Hillary: Ezzy’s wheelchair actually looks quite a bit like a really super fancy (and ridiculously heavy) stroller. It has shiny rims and shocks and a bright red ergonomically shaped seat. And Ez is still so tiny that she can sort of “pass” for a sleepy toddler hitching a ride. I actually get a lot of jealous looks—dads tapping their pregnant partners’ shoulders and nodding toward us. All the while I’m thinking: this is not for you, friend. I find the whole thing hysterical.
Every once in a while I get an outright question about what brand it is—like it is the next big thing in ultra-expensive “must have” strollers. The hard part comes when I respond that it is actually a wheelchair-stroller. People sometimes look embarrassed. Sometimes they give me this horrified glance, like I’ve slapped them. Most people say pityingly, “Oh, I’m so sorry.” Here’s the thing: I never want anyone to say they are sorry about Esmé. She’s perfect. There’s nothing to be sorry about. My dream response? It is just that they would look at her—you know, like any other kid—and say, “Wow! You’ve got awesome wheels, kiddo! You’re super lucky!”
Miggy: The reason we connected at all was because I had read your post in The Mighty about an incident in a public bathroom and a woman who was trying to use the accessible stall in front of you and your disabled daughter who is in a wheelchair. You eloquently said so many things in that article that I have felt many, many times. Especially the part when you said, "I know the look she had, the look of trying to ignore the inconvenience we seemingly pose to the world around us... I see it when we take up too much space or move too slowly or need a bit of extra attention, when we ask for accommodation. Not every time. Not all the time — but more often than seems right." I don't know what my question is exactly, but I thought you could maybe talk about that discomfort of these situations and how you've adjusted to being a special needs mom who needs to be an advocate for her daughter and sometimes needs to be assertive in awkward situations where people are being rude or ignorant. Have you developed specific coping mechanisms? Do you have a formula, phrase or anything that helps?
Hillary: I mix fancy cocktails in the evening and go to a boxing gym regularly. That really helps. For real.
But you know, truthfully, I have gone through periods of time where I’ve had formulas that were a lot about my sanity—engaging and educating when that made me feel in control, shifting topics when I felt emotionally fragile, and so on. However, Ez understands everything now, and so my focus has been mostly on dealing with situations in ways that prioritize her self-esteem. A few people criticized me about that article, suggesting that I should have dressed down the mom in the bathroom then and there. I’m actually not super quick on my feet verbally (I am a writer because I’m only witty like three hours after the fact), so that was part of it. The other part was that Esmé needed the bathroom, so I wasn’t going to make her wait just to prove a point. But the biggest part was that I didn’t want to draw Esmé’s attention to the fact that someone was treating her poorly.
Miggy: Tell us something you love about your child. A special story, a personality trait or just something others might not know.  
Hillary: There are so many things I love about my daughter. I could go on and on…which is a good thing to keep me in blog posts for eternity. But I will try to keep it simple. We have a family saying: “Esmé is all attitude.” She is constantly doing things that are supposed to be impossible for her. She is eager and determined and hard working. And so very joyful. I believe these character traits have kept her alive and thriving in her way. And they are what I admire most about her…what I try to learn from her.


Miggy: What is the biggest lesson you’ve learned since becoming  Esmé's mom?
Hillary: Before Ez I sort of figured that if I worked hard, did the right things, and was responsible that life would go somewhat as planned. Until I had Ez that was more or less how it worked, and it might have continued that way save for our apparently ridiculous relationship with probability. Instead when Esmé arrived I was faced with a child who not only was nothing like I had imagined, but who I was terrified was going to die. A child who almost did die. A child who is still unbelievably unusual and fragile.
But here’s the thing: Life happens. It happens to all of us. It is hard and scary and beautiful and lonely. And you deal with it. Who you are is how you deal with it. Esmé showed me this.
How I deal with it is through advocacy, through storytelling. I try to find honest bits of beauty and fear and love that show something about what it means to me to be human, to be a mother, to love another person, to care about people who are different and vulnerable. This is all a lesson about connecting, about creating little sparks of recognition with others. Because that’s all we leave, in the end: the sparks we make in the world. My daughter makes so many sparks. It is a magnificent thing to watch. I just do my best to put it all into words.

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Oh Hillary, that was fantastic. I love how I really get a sense of who Esme is through your writing--such a gift. And your last paragraph... I've re-read it several times to let it soak in a little. Creating little sparks of recognition with others and recognizing and recording those sparks that your daughter makes. It is really beautiful. I like what you said about going in cycles when it comes to your responses to other people. It is really hard to be 'on' all the time and to be the one who has to call other people out or be in 'education mode.' And like you, I'm trying to be more aware of my daughters feelings and shielding her (while I still can) from negative influences. Thanks so much for your words. Esme is a little firecracker! You can see the spark and spirit in her and obviously the apple doesn't fall far from the tree. You're lucky to have each other. Thanks again Hillary. 

As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com. You guys! I need some peeps! So PLEASE send them my way! 

And have a fantastic weekend!

XO, 
Miggy