Help a MoM Advocate for Twins at School

I firmly believe that school administrators mean well. They have to balance the needs of the individual child against the needs of the entire student population. Like parents, however, school administrators are sometimes wrong. They sometimes have incorrect information available to them. They sometimes lack all the information available on a topic. And yes, on occasion, they’re stuck in their opinions and not open to changing them, regardless of the evidence presented to them.

As parents, we are our children’s primary advocates. On occasion, we make mistakes, and I’d like to think that we learn from them. It’s essential to support others parents in standing up for their kids. Standing up against school administration can be particularly difficult.

We received the following heartbreaking email from reader Gayle.

I need help. My fraternal boys were separated for their 2 years of pre K. It was very hard.

One is a little more spirited and had a tougher teacher. We wanted them together, and they wanted to be together for their 2nd year of pre K but were met with resistance and told to wait for kindergarten. They could be together then.

So I swallowed that gut feeling and saw my spirited son develop a facial motor tic and now also a vocal tic.

I am seeing anxiety in him. We found out at the end of the year conference he was calling himself a bad boy and saying he was bad! That broke my heart!!! He has never said that at home.

Then they told us the boys need different Kindergarten teachers “because they have different learning styles and would respond better to different teachers”. They truly don’t know if they have the same learning style because they’ve never been given the chance to have the same teacher. I want them together so I know they have the same rules and more equal treatment. And when M feels nervous or feels he has no friends he can look over and see his brother.

I am fearful for him. The superintendent took almost a month to “review all the data and info” but yet would accept none from us.

We have a meeting to “discuss placement” – I am quite sure its not going to be to put them together. 2 other sets of twins going to Kindergarten have been allowed to be together. So why not give ours the chance? I don’t want to always wonder “what if”.

 

I’m sure that your heart hurts for this family as much as mine does. Gayle welcomes your support, suggestions, and recommendations in the comments.

I spoke to a local mother of 6, including several children with special needs, asking her advice on successfully advocating for our children in the schools. Her response? “Documentation, documentation, documentation. And never stop advocating.”

  • Get all communication from the school in writing. Print out emails and texts and keep them in one place. If you hear something that a school official is unwilling to commit to paper or an email, then you can email them saying, “I would like to confirm that when we discussed W, you said X, I said Y, and we agreed to Z.” Invite them to respond with corrections to your statement and give them a deadline by which to respond. End with, “If I don’t hear back, I’ll assume that I’ve correctly represented your position.” Copy anyone you think needs to be informed of what was discussed.
  • Commit to writing all your communication with school officials and related professionals. Document your discussions in email as described above. Also, I strongly recommend preparing for every meeting with school officials by writing down all your arguments and bringing those notes with you. It’s easy, in the heat of the moment, to forget everything you wanted to communicate. Trust me. I’ve done it.
  • Seek out support from professionals who know your children as individuals. Don’t be afraid to confer with your pediatrician, speech therapist, occupational therapist, physical therapist, psychologist/counselor, or even friends and family who know your children. Get them to write down their thoughts and recommendations. I know that it can feel like you’re imposing when you ask for supporting documentation from these people, but remember that your child’s wellbeing is at stake. It’s also okay to seek out a second opinion. For example, if the school speech therapist doesn’t think your child needs services, but you’re certain that she does, get an independent therapist to evaluate your child. We had to get a second opinion for my daughter M.
  • Keep copies of everything. On occasion, you’ll have to hand out copies of your documentation. Make sure you keep a copy of everything. Everything. I submitted my twins’ kindergarten year school records to their new school… and they lost them. I still don’t have copies.
  • Be aware that you may have to fight the same fight over and over. A new teacher, principal, counselor, or even school year may necessitate you making the same argument for your child all over again. I was fortunate that the second time I had to argue that my daughters be taught at their level regardless of their grade placement, I had the school counselor in our corner… and my arguments were practiced and polished.
  • Seek out existing advocacy documentation. For those of us who need to advocate for twin-specific issues, know that there are tools out there to explain the variation and commonalities of multiples’ experiences in school. At this year’s Multiples of American convention, I picked up a copy of the NOMOTC guide titled Placement of Multiple Birth Children in School. This is a resource I highly recommend, and can be purchased from Multiples of America. I am so convinced of its effectiveness in helping us advocate for our children that I will commit to lending my copy to any HDYDI reader who wishes to borrow it. I will mail my copy to you at my expense and ask you to return it to me or pass it along to the next person in line at your expense. For other issues, I recommend that you seek out organizations specific to the issue. They may have documentation available to you.
  • Seek out proponents within the system. Sometimes, having a friend within the system who knows you and your children can be the difference between smooth sailing and a fight. Be polite to everyone you meet and help our where you can. The friends you make can help you navigate school system politics.

Now, a few thoughts specific to Gayle’s very difficult situations.

  • You are not alone. We are behind you and support you in your efforts to do what’s right for your sons. We are angry and sad right with you.
  • Find out whether your state has a Twins Law. Many states and countries have laws in place that protect a parent’s right to make classroom placement decisions for their multiples.
  • You are the expert when it comes to your children. You. Not the school administration, regardless of what they think they know from the classroom or their general assumptions about twins.
  • We would recommend getting an evaluation from a child psychologist. I predict that a professional outside the school system would back you up.
  • Contact your local mothers of multiples club and find out whether there’s another mom or two who can testify to the importance of treating twin sets in a way that acknowledges each child’s needs.
  • The “different learning styles” argument has big holes in it. Any decent teacher is capable of teaching a group of children, each with his own learning style.
  • Point out, by email, that you have documentation that needs to be considered by the superintendent. If you receive no response, you can turn to local news outlets to help you put pressure on the school district.
  • Do what you can to tease apart what part of the negative experience may have come from having a poor teacher as compared to being separated.
  • Ask your boys what they want as far as classroom placement, and why.
  • If all else fails, be open to switching school districts. I bought a house that would us at the school I wanted for my girls.

Sadia (rhymes with Nadia) has been coordinating How Do You Do It? since late 2012. She is the divorced mother of 8-year-old monozygotic twins, M and J. She lives with them and their 3 cats in the Austin, TX suburbs and works full time as a business analyst. She is the newly minted Single Parent Coordinator for Multiples of America, also known as the National Organization of Mothers of Twins Clubs (NOMOTC). She retired her personal blog, Double the Fun, when the girls entered elementary school and also blogs at Adoption.com and Multicultural Mothering.

Twinfant Tuesday: Infants are Easier

My twins are so solidly in their toddlerhood now that it’s hard to remember when they were infants. Perhaps it’s better to make a list of all the things that were easier to do when they were younger.

Holding them  Boy, I wish for the days when each baby weighed 10 pounds and could easily be held at the same time. They didn’t wiggle around, or twist their bodies, or arch their backs, or slide down your sides, or lean their entire weight away from you. These days my kids definitely make their intentions known. Babies blissfully don’t have intentions.

Feeding  Babies are relatively clean. There might be a spit-up or two, and burping them could be a little tedious, but these are things you expect and can anticipate. As toddlers, when they decide that the food they loved yesterday is what they are throwing at you today, you will be wishing for those burp cloths back. My kids are good eaters, and they still make a big mess. At this point they can also say that they’re hungry. Loudly and repeatedly until they get fed what they want.

On the move  Heavy and cumbersome as they are, infant car seats and the strollers they attach to are really as safe and easy as it gets. Venture into the land of shoe wearing (and the eating/ taking off of them), handholding (or wrenching their hands out of yours while walking through a parking lot), and trying to keep toddlers in strollers (or just trying to put them in while they’re arching their backs and screaming), and let’s just say you will start to regret complaining about the infant car seats. Don’t get me started on what to do when they go off in opposite directions.

Playing  Once upon a time a simple squeaky toy or blanket was all that was necessary to amuse a baby. In fact, nothing was needed at all as long as baby had something to look at, like Mommy’s face. Now? Toddlers have the attention span of a few minutes, at most. Mine are not interested in television yet (except to press its buttons and climb it), and their entire playroom full of toys is old news. I cannot keep them in one place past a couple of hours before they’re fighting and biting each other out of boredom, including our own house.

Sleeping  Infants sleep a lot. Toddlers don’t sleep as much. Enough said. These days trying to figure out when nap time will be is sometimes a guessing game. When they don’t sleep (for whatever unknown reason), cranky toddlers will eventually get on your last nerve.

…Maybe I just miss my little babies. Sniff.

lunchldyd is mom to 19mo b/g twins and their 4yo sister. Though the days are tough around here, she feels lucky to be able to spend her summer vacation with them.

Separate Preschools – An End of Year Update

Preschoolbeforeandafter

Some of you might remember my post last summer about separating my twin boys for preschool, not into different classes, but into different schools. We are wrapping up the school year so I thought I would share a bullet-point list update of how the year went. One kid was done two weeks ago, the other finishes today. (Making up the snow days.)

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Good

  • Independence. Every discussion on separating twins in school eventually independence is cited as a main reason to separate. In our case, I didn’t feel like they were ready to be apart, and they didn’t really understand what was happening. However, it was very clear to us as parents that one was incredibly reliant on the other, to the point he would defer to his brother to answer questions about the alphabet or counting. Being in his own school, he has been able to demonstrate he can do those things on his own, without his brother.
  • New Experiences. Both boys love their teachers and have enjoyed going to school. They love telling each other about what they did today in school and they are able to share these experiences with each other.
  • Excelling in the school. Without the other to lean on, they have each grown and really prospered.
  • New friends. They have both made new friends and look forward to seeing them at school. We have set up playdates with new friends and it is nice to see them form friendships without each other. 
  • Progress. This time last year we were at such a tough place, middle-of-terrible-3’s, a kid with un-dagnosed, indeterminate delays, and it was heartbreaking and frustrating. Now a year later it is so much better. We have answers, strategies and we are all working together. It’s truly amazing to see how much progress we have all made as a family.

Bad

  • Juggling two different school calendars. One kid goes four days a week, one goes two days a week, overlapping only one day, but forcing us to be two places at once. Both schools were considerate of the situation within our family and invited the other kid to class parties. It never worked out though, it seemed whenever the parties were scheduled, one or the other was sick, or the other was in class that day in the other school. Both schools had a policy of no siblings on field trips, but requested parents to accompany their kids. Every field trip except one we couldn’t go because the trips, of course, fell of a day the other was NOT in school. 
  • Dependence. My boys are very close and play well together (most of the time.) They have active imaginations and finish each other’s thoughts. They devise games and scenarios and have similar interests. We have a playgroup we have played with since the boys were babies, comprised of other twin families, and whom my kids play with really well. It was surprising to read in a progress report that one of my sons did not have any friends, did not play with any other children and did not seem to socialize with anyone other than the adults in the room. Considering how social he is at home and with his playgroup friends, this was unexpected. He has since made a couple friends and seeks them out occasionally, but without the companionship of his brother it seems like he is less confident in making friends.
  • Emotions trauma and drama. The first weeks were really hard. Tears, tantrums, acting out, you name it. Same thing happened after Christmas break and the first few days of spring break after they’ve been together 24/7 again. We’ve also seen a lot of jealousy when one kid has something fun at school like a field trip or pajama day. One kid would have a bring-your-favorite-toy day and the other would want to bring one too. I was always writing notes explained weird outfits or things in backpacks. 
  • The Twin Thing. When we have been invited to parties or playdates, I am not really sure how to include/not exclude the other kid. I have been “that Mom” who invited her other kid to a playdate because I didn’t want to have one miss it because he has a twin brother. At age 4, playdates are still a Mom-goes-too event and as far as I am concerned these two are a package deal for now. Eventually they can have their own social calendars, but for now where one goes we all go.

Ugly

  • Germs. Lots of them. One preschool class is a pertidish of plagues, two was ridiculous. We just got through the longest, crummiest winter in Chicago in a century so we were inside, a lot. And with two classes full of oozing, snotty, sneezy preschoolers exposing our family to bug after bug, we pretty much had something or another in an endless cycle the past seven months. We had so much plague at our house, it was gross. Pink eye, tummy bugs, endless coughs, colds, fevers, snot. Yuck.
  • Uncertainty. We had to wait until May for the IEP meeting to find out whether my one son would continue in the early childhood program. Truthfully I wasn’t sure he would, he’s done so well meeting his goals. So we had to enroll him in the other school with his brother so we could save two spots in one class. At the meeting we were told he would definitely be going back next year, that he still has ground to cover before he’s ready to start Kindergarten. Due to their November birthday, they will be almost-6 when they start Kindergarten and have another whole year of preschool where they will be 5 most of the year. After this year of preschool, though, it is uncertain what will happen next. Whether they will be back together, separate classes, separate schools, separate grade levels. 

 

Jen is a stay-at-home Mom of 4-year-old twin boys who just finished up a year of preschool, separated and on their own. They all survived and thrived.  Their adventures are (intermittently and mostly in photos) blogged at goteamwood.com.

A Compromise

A few days ago marked the close of another school year, the first one I taught after my twins were born. Having only worked 6 weeks the year prior before taking my maternity leave, it was a difficult adjustment. The first several weeks seemed like just an exhausted blur, and the weeks following did not get much better. The month of March (the “long March”) was the worst. I was feeling depressed, rundown, burnt out, just plain tired and uninspired.

The crawling babies began to walk, then run, then climb, and by the end of the school year their naps were hit-and-miss because they were ready to transition to only one. So I had cranky babies and a preschooler to pick up from school, then feed and bathe all three after a full day of work. And I constantly worried about my aging mom, who I counted on every single day in order for me to go to work. I started to rethink this decision made a year ago

Clearly, I knew my husband’s position. We’ve had this discussion many times before; I’ve been wanting to be a SAHM ever since our first was born. But the decision we made came mostly from his arguments, all of which are valid: We have family nearby, they’re willing to help, these are our prime working years, I should be building my career and our family’s financial wealth. But he doesn’t understand the guilt that comes from having nothing left to give to the kids crying and tugging at you for your attention at the end of each day. He doesn’t understand that I blissfully enjoyed almost an entire year at home with my firstborn (starting 10 weeks before her siblings were born so she had me completely to herself), and the sadness I feel that the twins will NEVER get to experience that, just by the fact there are two of them plus an older sister.

One morning in early May, after a night of tormented sleep, I sought out my administrators to ask if there were any options for me to relieve some of this distress. Other than resign and lose my job security and all the years of service credit I’ve built with the district, the only other option was to work part-time. I never considered this an option because… well, because it is rarely done. I’ve only known two colleagues who have ever done it, and currently there is only one other teacher working part-time in the entire district. But, surprisingly, after almost collapsing into tears while telling my principal of the difficulties of trying to be the best mom I could while also being the best teacher I could, she was completely supportive. And, it turns out, so was my assistant principal working on the master schedule (the schedule of all courses during all class periods for every teacher at the school)– he was able to give me two morning classes a day.

My husband and I then had this discussion once again, but this time I was offering an alternative. What if I could keep my job security, keep my vested years and retirement, but also spend more quality time with the kids? I had the numbers to present to him, and my mom had already signed off on the idea. We could take the financial hit temporarily; my mom would only have to watch them for less than 3 hours a day instead of 8. I could feel fulfilled, as I am keeping my career, but also not be completely worn out before I even pick up my kids. Surprising me yet again, my husband agreed.

Life changes after having kids. This is the way we’ve decided to compromise. My new contract was signed last Friday. I’m not absolutely sure yet that this is the best way to go for our family, but I am trying something that I think might work. We will see.

lunchldyd is currently on summer vacation from her job as a high school teacher. Her husband has deferred his hopes of moving into a bigger house soon because of her part-time working decision. 

Toddler Thursday: When Your Toddlers Aren’t Toddling Together

We’ve all heard the common question, “How do you do it?” That is how we got our name. Another common phrase I have heard over the years, as many parents of prematurely born twins do is, “They’ll catch up on their own time.” I hate to say it, but sometimes this phrase is like a Band-Aid trying to cover up a bigger “owie” than it can. Sometimes it’s the only thing people can think to say to try to make the mother feel better, when she is wondering if there is a bigger problem to be addressed.

Take my little guys, for example. Growing and progressing a little more slowly than the average baby, but also born much earlier than the average baby. We always take their early arrivals into account. We don’t want to overshoot and stress them out during their development, yet, as a mother I don’t want to undershoot their capabilities by overprotecting or making excuses for them. I believe mothers of premature children may be a little more likely to overprotect their children at times, and that’s okay. Everyone has been through a lot! I also believe there is a balance and it can take a bit of time and self-reflection to understand your parenting style.

My twins are about to turn 4 and when I think back to two years ago, I remember twin b was not yet toddling. Meanwhile his twin had started motoring around on his own. Twin b was able to walk everywhere on his knees, but not his feet. Alarm bells were going off in my head, but I tried to ignore them and give my son more time to figure it out. We shouldn’t compare our twins, as they are individuals and they often do learn things at different times. I kept watching him closely and mentioned it to a few people now and then. I often heard, “he’ll figure it out on his own time.” Hmmm…Are we sure about that?

After lots of watching him in silence, assessing and reassessing; working with him one-to-one to try to get him to walk, I finally trusted my instinct. Something was NOT right. As he approached 24 months corrected/27 months actual we looked at his feet closely. I knew he was able to walk if he had the right support for his feet. I had inspected his feet closely, compared them to his brothers (sometimes comparing twins IS helpful,) watched what he was doing when he tried to toddle and cruise along the couch. I put 2 and 2 together when I realized he could cruise without a worry, but as soon as he tried to stand in the middle of the floor or walk, he’d collapse. His teeny tiny feet just couldn’t keep him standing upright because his feet were very flat and one was practically turning over. We weren’t seeing it because we were trying to promote his walking by keeping him in supportive shoes most of the day, which was supported by his physiotherapist. Once I realized his feet were likely the problem, I contacted our PT and she said my instincts could be correct and he was seen later that week. She yanked off his little shoes, assessed his feet and confirmed that his feet would benefit from the use of orthotics. He was fitted with a custom pair of ankle-foot orthotics (AFOs).

The day we picked up his custom AFOs, the physiotherapist helped him put them on as the orthotist watched. First we had to dig through a box of extra shoes at the centre to fit the larger sized AFOs. Once the AFOs and shoes were on, twin b was set in the middle of the floor…and…HE STOOD…and then…HE WALKED! ALONE. It was amazing to see unfold. One moment he’s a non-walker, the next he’s toddling around the assessment room on his own! I could not hold back my happy tears! They were also likely tears of relief, but I didn’t realize it at the time.

The moral of this story? Trust your instincts and if you feel something isn’t making sense or you’ve said and heard, “he’ll catch up on his own time,” maybe a few too many times, it’s okay to put your foot down (pardon the pun) and ask LOTS of questions to get the answers you need.

When Mommy Is Sick

When Mommy Is Sick, from hdydi.com. Sadia reflects on how different it is to be a sick single parent with big kids than infants.Remember how my little M came home from her Christmas vacation feverish and pathetic? I caught her virus and became equally feverish and pathetic.

It started with a cough and quickly blossomed into what I suspect is this year’s flu. When I realized I might be contagious, I elected to work from home rather than bringing my germs into the office. That afternoon, my cough worsened and I was certain I was about to be very ill. I begged off work to stock up on easy foods and medication.

Let me tell you that it’s far easier to be a sick single mother of 7-year-olds than of infants.

When Mommy Is Sick with Infants

The last time I was this sick, my daughters were babies. I had a blog, but wasn’t blogging with any regularity and I certainly wasn’t recording how hard those first few months were. I have vague memories of those days of fever and pain.

On the worst day, my fever around 103°F, I remember thinking there was no way I could carry the babies and their car seats to the car to take them to daycare, so I kept them home with me. I was so weak that I remember crawling into the nursery and feeding my babies, one at a time, holding the bottles through the slats of the cribs as I lay on the floor. I changed their diapers through the slats, too. I was too weak to lift them out of their cribs. They stayed in there all day.

My husband was in Iraq and I was too proud/worried to ask the neighbours for help. The only close friends I had nearby had babies younger than mine–we had 5 little ones born on the block within a 12 month period–or were elderly. I wasn’t going to risk passing on what I had to them. Our families were thousands of miles away.

I was well enough to take the babies back to daycare the next day. One of the teachers didn’t live too far from me. She told me to call her if I were ever in the same situation again. She would be happy to bring the babies into school for me. It hadn’t occurred to me to reach out to my daycare community. I’ve never made that mistake again. I also make sure that my friends and my daughters’ friends’ parents know that I’ll be there for them in a crisis.

When Mommy Is Sick with 7-Year-Olds

When I was at the store last week, I focused on picking up food that my kids could prepare themselves: a fresh gallon of milk for cereal, hummus and pita chips, pre-sliced apples and baby cut carrots, sandwich fixings. For myself, I picked up generic multi-symptom flu meds, bananas, chamomile tea, and the few frozen meals available with sane quantities of salt.

That night, I took my acetaminophen-laced meds before driving out to get my girls from after school care. I explained to them that mommy was very sick and that I needed them to be very grown up. It turned out that M had eaten dinner at the Y, but J had skipped it. I showed them their self-service options and told the girls to clean up after themselves.

I didn’t feel like my temperature was falling even an hour later. I came out from my room and asked the girls to prepare for bed, telling them I didn’t feel good. J asked if she could take my temperature. I asked her to open the box of thermometer probe covers, applied one to our thermometer–we still use the two the NICU sent home with us 7.5 years ago–and popped it in my mouth.

102°F. Great.

M and J had changed into their pajamas and brushed their teeth. I reminded them to put their dirty clothes in the laundry and sent them off to bed after J brought me a wet washcloth to try to cool my neck and forehead. I kissed them on the top of their heads instead of nose and cheek as I usually do.

J asked me how to set the alarm clock because she was going to check on me every two hours. I told her that I appreciated the thought, but needed her to get plenty of rest to maximize her chances of staying healthy. She wasn’t pleased.

I posted my fever on Facebook and asked for advice. Several friends recommended taking ibuprofen, but I discovered that the only bottle I had had expired. I figured I’d try to push through.

I dozed feverishly until 9:00. On the hour, my two sweet girls scuffed into my room, each in a bathrobe and slippers and holding her nightlight. They wanted to see how I was. Since they were up anyway, I asked them to load up in the car so Mommy could pick up medicine. They were unable to help me at the 24-hour drive through at CVS Pharmacy, so we had to all go inside to pick up a bottle of ibuprofen.

I ordered pizza delivered a couple of times during the week I was most unwell. The girls’ Girl Scout leader took them to their scout meeting and their teacher dropped them home. I loaded and ran the dishwasher as my daughters made their way through plates and cups, and I disinfected around the house as best I could to keep my virus to myself. I also cleaned the cat litter and took out the trash.

Otherwise, though, my daughters have been pretty self-sufficient. I’ve reserved my energy to spend with my girls, talking to them about their days, talking about the things they find interesting, picking up after them, especially dirty dishes, dirty clothes, and dirty floors. They’ve helped out by making their own meals, putting away clean dishes and clothes, and taking care of their own basic physical needs. I’ve dropped them at school and picked them up, run their baths, and checked their homework.

Poor M felt terribly guilty for having passed on her virus to me, so she needed extra affection to help her understand that I had chosen to risk getting sick because I loved her … just as she was doing in caring for me. J tired of working to get along with her sister and needed me to intervene a few times.

There’s been a lot more TV at our house than I’d usually allow, but given that eating a meal wore me out so much that I slept for two blocks of 8 hours the following day, I feel like we’ve been doing really well.

Ever wonder if it gets easier? It does!

How do you manage care for your children when you’re sick?

Sadia (rhymes with Nadia) has been coordinating How Do You Do It? since late 2012. She is the divorced mother of 7-year-old monozygotic twins, M and J. She lives with them and their 3 cats in the Austin, TX suburbs and works full time as a business analyst. She retired her personal blog, Double the Fun, when the girls entered elementary school and also blogs at Adoption.com and Multicultural Mothering.

Am I a Special Needs Parent?

I read this exquisite piece by Sheri Dacon on the very particular grief that comes with having a special needs child. I hope that when I see a child with the facial features of Down Syndrome or the electric wheelchair that indicates some sort of mobility challenge, both the child and her parent see my smile as genuine, not strained and feel seen, not ogled.

I read a list of special needs parent characteristics that Marissa shared on Facebook, and was moved to tears by numbers 18 and 19:

  1. Your biggest fear is your child will outlive you.
  2. Your second biggest fear is he/she won’t.

What must it be like to fear or know that your child will never be self-sufficient? I felt it for a very short time. For a few months, early in my daughters’ lives, I felt the fear that I would have to bury my child. I wouldn’t wish that on anyone. Later, I feared that she would never be able to care for herself. I wouldn’t wish that on anyone either. But we’re past that now. M is doing great.

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I’m Not a Special Needs Parent

Certainly, like every other responsible parent, I have a will that specifies who should care for my children if I die while they are still young and life insurance to minimize any financial burden on their care providers. I don’t, however, worry about their long-term wellbeing. Barring some unforeseen tragedy, both my children will be able to provide for themselves beyond high school. At age 7, they’re already talking about college, planning to get an apartment together as upperclassmen so they can have pets.

Compared to the parents I mentioned above, I am not a special needs parent. Not even close. The closest my kids come to being having special needs is in needing to be treated as intellectually well beyond their years while being emotionally and socially still just 7. J’s concern that it’s “rather risky, don’t you think?” for her father to mail her health insurance cards deserves a complete answer. Her question about the similarities between the recent Great Recession and the historic Great Depression, inspired by the Kit Kittredge books, required a nuanced response. I need to warn M to be careful about sharing her enthusiasm for the Fibonacci series because it might be perceived as bragging. These were just three topics that came up in the hour before I wrote this paragraph. My girls keep me and their teachers on our toes.

But I Am a Special Needs Parent

There are other measures, though, by which I am very much a special needs parent. We weren’t always so certain that my daughter M’s birth defect wouldn’t affect her life expectancy.

When the principal calls me into her office to discuss how children at school are teasing my child for her appearance, I am a special needs parents.

When my child’s teacher reads her whole class the beautiful book Wonder to help them have compassion for her, I am a special needs parent.

When I need to discuss with my 7-year-old whether she wants corrective surgery, I am a special needs parent.

When I ignore the stares of others because my daughter is panicking at the sight of a grocery store mascot or ballet dancer, I am a special needs parent.

I Fall In Between

My family is not shaped by M’s particular challenges. I do not have a severely disabled child. Nor are my children typical. M’s frontonasal dysplasia isn’t something I can afford to ignore. My daughters’ extreme intelligence is a parenting challenge.

I don’t pretend to understand the life-altering realities of families further down the special needs continuum. Nor should parents with neurotypical children or those whose appearance falls within our societal norms think they understand my reality.

There are things in my life that are hard for me. I can look around and see what appear to be easier lives and those that are much, much harder. Compassion beats comparison. “Hard is not relative,” says Ash Beckham around 3:40 in the video below, “Hard is hard.”

What’s the hard thing in your life? Do you feel guilty for finding it hard?

Sadia (rhymes with Nadia) has been coordinating How Do You Do It? since late 2012. She is the divorced mother of 7-year-old monozygotic twins, M and J. She lives with them and their 3 cats in the Austin, TX suburbs and works full time as a business analyst. She retired her personal blog, Double the Fun, when the girls entered elementary school and also blogs at Adoption.com and Multicultural Mothering.

Twinfant Tuesday: It Gets Easier

I wrote this post last December, when my fraternal twin boys were three months old and some wonderful people reminded me that it gets easier. A year later, I often think about this day and how much it helped me…and helps me still.

Being a parent to 3-month-old twins is hard.

I get lost in the minutae of the moment…how much sleep they’ve gotten today, how the hell we’re going to transfer from 5 naps per day to 3 without ever staying awake longer than 2 hours (math = more fun with sleep deprivation!), and how to institute that perfect bedtime routine.

But thankfully the universe delivers periodic reminders of the big picture.

Yesterday, my husband and I loaded the boys into the Baby Bjorns and set off to Golden Gate Park. We took a beautiful walk around Stow Lake. He goes back to work tomorrow, after a wonderful vacation together, and our conversation was drifting from our fun holiday memories to the logistics of returning to our daily routine. There is simply too much to do in a day, and inevitably our needs are not going to get totally met. My back was starting to ache with the weight of it all. And the weight of little R. He’s getting so heavy!

Suddenly we hear a shout, “Are they twins?” A family was drifting alongside us in a paddle boat. Two tousle-headed boys pedaled in tandem, the parents reclining peacefully in the back. Grins adorned each face. In the fading afternoon light, the picture was idyllic.

“Yes,” we called back. “Three months.” We must have looked it too, with our tired eyes and spit-up stains and my awful too-big-but-still-the-only-fitting maternity jeans.

The parents’ voices were full of sincerity. “It gets so much easier. In a few years, they will be carrying you!” They gestured to their 11-year-olds, cheerfully ferrying their parents around the lake. “Two is much better than one. They’re best friends and we have so much fun. It really does get easier.”

I absolutely believe them.

Keep sending me reminders, universe, that one day all the tiny things I worry about will be a distant memory, that change is inevitable, that the days are long but the years are short.

Remind me that all our problems are the result of abundance – wonderful, crazy, soul-stretching, too-much-ness – and that the thing to do with abundance is to embrace it.

Keep reminding me, universe. It gets easier.

How I Learned that My Child Had Frontonasal Dysplasia

Prematurity Awareness Week 2013: How Do You Do It?

World Prematurity Day November 17In the United States, 1 in 9 babies is born prematurely, 1 in 10 in Canada. Worldwide, over 15 million babies are born too soon each year. While not all multiples are born prematurely, a multiple birth increases the probability of an early delivery. Babies born prematurely, before 37 weeks gestation, are at a higher risk for health complications in infancy, some of which can have long-term effects. Full-term infants are not all free from their own health complications, of course.

In honor of November’s Prematurity Awareness Month, led by the March of Dimes, How Do You Do It? is focusing this week’s posts on The Moms’ experiences with premature deliveries, NICU stays, health complications, special needs, and how we’ve dealt with these complex issues.


The first indication I had that there was a problem beyond how premature my daughters were was a delivery nurse’s comment as the obstetrician removed Baby B from my womb: “There’s something wrong with her face!” Both my girls were whisked away to the NICU, although they did unstrap one wrist to I could stroke M’s hair for an instant while I was sewn back together.

I didn’t get to see my daughters until they were 36 hours old. They were in the NICU, which I wasn’t allowed to enter, thanks to a fever. At first, I was convinced that M hadn’t made it, despite my husband’s assertions to the contrary. I could see the fear in his eyes. It wasn’t until later that the fear was as much for my mental health as for our twins’ physical health.

In those first 36 hours, I was brought conflicting news. The babies were doing fine. They would be given my colostrum as soon as I produced some. No, they’d be on high-calorie formula only. They were on feeding tubes. Only J was on a feeding tube. M was at risk of starvation because they couldn’t insert the feeding tube nasally. She wouldn’t be allowed to starve; they could insert it orally. She had no nasal passages. She might have nasal passages. Of course they’d give the babies colostrum, mixed into their formula. The best news of the day came from my friend Kaylan. As my husband tried to explain to me what had gone on with M’s nose and droned on about blockages, Kaylan cut him off. “She had a really big booger,” she said. Her feeding tube was in place now that her nose had been cleared.

Twin B in the NICU, How I Learned that My Child Had Frontonasal Dysplasia, from hdydi.com

This was how I first saw my little girl.

I didn’t really know what to expect of the NICU, and I was more struck by how tiny both my little girls were, by how many wires and tubes draped their miniscule bodies, than by the difference in shape between M’s nose and J’s or how different my identical daughters looked. The girls wiggled and squirmed much as they had in my womb, but they cried too, almost silent kittenish meows. They were alive and I could hold them. I forgot all about the delivery nurse’s comment and concerns about M’s nose and just held my babies, one at a time. They were feeder growers. There was a little boy on hospice care in the next isolette to remind me how fortunate we were to have relatively healthy children.

Closeup in the NICU, How I Learned that My Child Had Frontonasal Dysplasia, from hdydi.comIt wasn’t long, though, before M’s face was at the forefront of our medical concerns. M’s nose was asymmetrical, large out of proportion with her face, flat and dimpled. It felt more like the cartilage of my upper ear than the hard bone of my own nose. It might be a glioma, they told us, a brain tumour, around which M’s face had formed. I knew better than to rush to the word “cancer” on hearing “tumour”, but that was where my mind went. We were scheduled for an MRI. Since a newborn couldn’t be expected to be still of her own accord, she would have to be sedated. At the same time, we were scheduled for an appointment with a geneticist to talk to us about what genetic tests would show. Facial anomalies frequently accompany chromosomal abnormalities of all sorts, from the relatively common Down Syndrome to a plethora of rare conditions.

I asked whether J should also undergo genetic testing, given that she was M’s identical twin. If there was a DNA-based issue, chances were huge that J had it too. My concerns were tabled until we had a diagnosis for M.

The geneticist saw us before we even left the NICU. It was strange to attend an appointment with a doctor for a person who couldn’t be present. Our NICU was part of what was then Austin’s Children’s Hospital, and the geneticist we saw was housed in the same building, but M still couldn’t leave the NICU to attend her own appointment.

The geneticist was incredibly kind. She could see how terrified we were. She was able to give us the good news that there was nothing obviously wrong with M from a genetic perspective, but we were no nearer a diagnosis. The only thing that was still on the table was glioma. We decided early not to include my family in the conversation; I knew we needed positive energy and we weren’t going to get that from them. Even a conversation with my ever-positive mother-in-law brought me to tears, tears I had so far withheld, as she told me all she had learned about St. Jude Children’s Research Hospital and its amazing work on pediatric cancer.

We had to wait for M’s MRI to know anything more about what was going on. Her breathing seemed unaffected, her pulse-ox consistently healthy.

M and J were out of the hospital and I had returned to work before our MRI appointment day came. In fact, M had done better in the NICU than J and was released to come home at 16 days old, not bad for a 33 week preemie. J joined us less than a week later.

On the day of the MRI, we had to withhold food from M. It broke my heart to pump her meal into a bottle instead of feeding my poor hungry crying baby. She was so tiny on the hospital bed they wheeled away from us through swinging doors. The waiting was awful, but eventually a nurse came out to get us. Only one parent would be allowed in the recovery room as she awoke. My husband and I looked at each other in horror, but he made the call. “You go,” he told me, “’cause she’ll want to nurse.”

She was asleep in the enormous bed when I went to her, an IV in her hand. She wiggled a little before opening her eyes groggily. The nurse gave me permission to hold her, and she hungrily rooted for my breast before giddily guzzling her next meal.

We were told to expect answers in a couple of weeks. On day 14, I had heard nothing. On day 15, I called the craniofacial specialist who had ordered the MRI. I’d met him at M’s bedside in the NICU, but I couldn’t remember which white-coated man he was. The receptionist who answered the phone didn’t know why I hadn’t received a call. I told her that I just wanted to know whether my baby had cancer or not. It had been months since we found out there was something wrong. She heard the urgency in my voice and put me on hold, returning to tell me that it wasn’t a tumour. Why they never called me with the results, I will never know. I guess it wasn’t urgent to them because she didn’t need immediate treatment. Well, it was urgent to us.

I made an appointment to talk to the craniofacial specialist. The wait was excruciating. There was an answer out there, but we didn’t have it yet.

Frontonasal dysplasia in one identical twin, from hdydi.comFinally, our appointment came, and with it the answer. M had frontonasal dysplasia. It was a condition in its own right and not indicative of any additional problems. In short, she had a facial cleft, not unlike a cleft palate, but higher in the face. We were told that corrective surgery was an option, but that M might not need it. We should watch her activity level and let them know if she seemed short of breath, which might necessitate surgery. Around age 7, kids might begin to tease her, so we might want to consider surgery for social and confidence reasons. They showed us photos of other kids with far more advanced frontonasal dysplasia. M’s was a minor case.

We had our diagnosis by the time the girls were 5 months old. M was perfect. So was J.

M is pretty and her special nose fits her face, frontonasal dysplasia and all.

Tell me she’s anything less than gorgeous. I dare you!
Photo Credit: Lifetouch

Today, at age 7, M has come to learn that her special nose is something that some people notice. Most people just look at her and see a vibrant, energetic, smart, beautiful chatterbox. Her frontonasal dysplasia is part of her story, but not a defining part.

Sadia (rhymes with Nadia) has been coordinating How Do You Do It? since late 2012. She is the divorced mother of 7-year-old monozygotic twins, M and J. She lives with them and their 3 cats in the Austin, TX suburbs and works full time as a business analyst. She retired her personal blog, Double the Fun, when the girls entered elementary school and also blogs at Adoption.com and Multicultural Mothering.

Differences in Spiritual Maturity

The HDYDI community is a safe place for MoMs (and DoMs. Come by, dads!!) with different parenting styles, life circumstances and beliefs. It’s hard for mommy bloggers to write about their kids’ religious training without delving into murky waters that reek of judgment or limiting their readership to others of the same faith.

I’m in the uniquely fortunate position to be able to talk about my daughters’ spiritual growth and religious training without coming across as condemning of other faiths. I don’t share the faith in which I’m raising M and J.

I know. I know that sounds crazy. I’ve only met one other mother who’s made this choice, and she was my college roommate’s mom. Like me, the mother is atheist. Like my daughters, my roommate is Christian. Specifically she’s a member of the Religious Society of Friends, colloquially known as Quakers.

To make a rather long story short, I’m an atheist and my ex-husband is Catholic. Before we conceived our daughters J and M, we agreed to raise them within the Catholic faith until they were mature enough to choose for themselves. Since my ex was frequently deployed, religious training and church attendance fell to me. Now that he sees the kids a week or less a year, the religious upbringing falls on me all the more.

At the beginning of this year, my 7-year-olds attended church with a babysitter and decided that they would rather become members of her non-denominational church than continue attending Catholic mass. We’ve been going every Sunday since, except when we’re out of town. We also recently began attending weekday Bible study. I’m “out” at church as an atheist, and people have been extraordinarily welcoming, understanding that I’m seeking an ever-maturing understanding of what my children should be learning and a community of mentors who can provide them what I cannot in the ways of religious training.

Last Sunday, a friend from ballet class invited my daughters to go to church with her. They had a great time and asked me whether they could switch churches. This wasn’t a decision I thought should be made lightly, so I asked them why they wanted to switch. It boiled down to rewards. Their friend’s church’s children’s program gave the kids tokens for good behaviour that could be traded in for toys. The church we attend has no such program.

spiritualMaturityI challenged my daughters. Church, I reminded them, was to honour and learn about God and Jesus. Were toys really important in that context? J got my point immediately. She was embarrassed, she told me, that she had lost track of what mattered. Of course Jesus and making decisions he would be proud of were more important to her than a cheap toy. I commended her for 1) acknowledging her error 2) discussing her embarrassment with me despite her discomfort and 3) setting her priorities where they belonged.

M wasn’t quite there. She pouted about it, finally agreeing to go along with me and Sissy, but clearly not getting the larger point. J was rather annoyed with her, but I took her aside and let her know that M didn’t share her understanding of religion yet and she needed to be patient. M would come around, in the same way that J would eventually come to share M’s confidence and vocal control when she sang. J was more ready for church. M was more ready for choir. It’s okay to learn things at different times.

A few months ago, I “came out” as atheist to my kids. We had been discussing something, I don’t remember what, that could be looked at from several different perspectives and I’d tried to fairly present them all. J asked me what I believed, and so I told her, explaining that I didn’t believe in God. M was unfazed, but J was truly bothered by my revelation.

The next night, J asked me to stop saying bedtime prayers with her, explaining that she considered it disrespectful. I now tuck the girls into bed, kiss them goodnight, and leave the room after reminding them to say their prayers.

J has had quite a few questions for me about where I stand spiritually, each of which I’ve answered honestly, to the best of my ability. Yes, I respect and try to emulate Jesus, but as an inspirational historical figure, not as the Son of God. Yes, I read the Bible, but as a document of ancient peoples’ best attempt to explain the world around them given their limited experience. No, I don’t find her Christianity to be in conflict with my atheism, and yes, I want her to be the best Christian she can be. I go to church because I made a promise to do my utmost to raise my girls within Catholicism unless they wanted otherwise, and to support their religious training to the best of my ability.

The other day in church, J and M elected to attend the adults’ service with me instead of going the kids’ class. At one point, J asked me whether something in the sermon meant that she was supposed to love God more than she loved her sister. I told her that was correct. She looked at me in horror. She couldn’t do that. She couldn’t possibly love anything more than her sister. I did my best to explain that I thought that she would come to that feeling in time, that her love for M was part of her love of God, but she wasn’t buying it. “You don’t understand,” she wept. “You’re an atheist!” I sent her to the row in front of us to talk to an adult friend whom she’s known since she was 2. They had a long whispered discussion, and J came away from it still a little teary, but at peace.

M doesn’t have J’s level of religious or spiritual maturity. Church is fun for her. She loves reading Bible stories, doing crafts, and memorizing verses. While she does her best to apply the lessons she learns to her life, being a Christian isn’t as core to her sense of self as it is for her sister. She’s only 7. I honestly think that J’s maturity is the anomaly.

It’s been interesting for me to observe these developmental differences in my daughters, given that they are otherwise so evenly matched. They hit developmental milestones in concert. Their academic performance is almost identical, although M gets 100% to J’s 98% in math and J’s analysis of the fiction she reads is a little deeper than M’s.

In what areas do your kids differ in maturity? Do you think that J’s understanding of religion at age 7 is the anomaly, or M’s relative nonchalance?