Unanticipated Milestones

Unanticipated Milestones

I’ve said it before, books like “What to Expect When You’re Expecting” were not written for me. I don’t think they covered fetal surgery in there. Their follow up, “What to Expect in the First Year” was also a total FAIL in my life. There should be a line of parenting books called, “Hang On For Dear Life!” or “When You Least Expect It… Life is Going to Come Along and LIFE You! (So Expect It)”
Okay, okay those are just working titles. The bottom line is when you have one of those kids that meet NONE of the milestones it can be… oh let’s see, where should I start? “Exhausting” is the first word that comes to mind, followed closely by “frustrating” and “disappointing.”

One of my children wasn’t talking or babbling by age 1 (because she was deaf and we hadn’t figured it out yet) and one who… sat up for the first time at age 3. Took her first steps at age 4. Can move a small game piece around the board without knocking everything over at age 10!

But hey, we get to celebrate and we do celebrate the little tiny things that other people might just miss or take for granted. Nothing is tiny around here. Every accomplishment just about brings me to tears, or at least gives me material for a new song:)

There’s this thing that happens, a sense of loss, like I’m giving up on something, for example~ Lucy’s first wheelchair. I cried! I cried and cried! It was an adorable KidKart! Really adorable and functional but, it was moving my 2 year-old from an unassuming stroller to a handicapped device. She wasn’t going to blend in any more. I felt like I was giving up on the possibility of her ever walking. (Why so personal Rachel?) I wasn’t giving up at all; she has spina bifida and cerebral palsy. Perhaps it’s just watching the future I thought I was going to have, clearly change course.

First Set of Wheels

I had a similar feeling when we found out that Leah was profoundly deaf and we realized that ASL would be best for her. It felt like we were giving up on the possibility of her ever learning to speak. So crazy! Why couldn’t it occur that we were giving her a language that she could be successful with? And why was it still about ME?

It has to be some default reaction, some programming or wiring… and the bottom-line is it most often feels like- “oh, they aren’t going to be like me?” Like I have got it so good? “Just like me” is the benchmark? Silly.

I thought I would start a new category here on my blog: “Unanticipated Milestones” I’ve heard from many of you recently dealing with those first wheelchairs and first hearing aids. Hey we just got our first accessible bathroom installed in our home and a few other cool things, that I never thought I would grow up and have, let alone need.

So, to celebrate: here is the bathroom renovation! I wanted it accessible, but not ugly or sterile looking. Aaron did the whole tear-out and moved all of the plumbing, he put it all back together again, installing a pocket door and painting. The guy is a rock star. He did not set the tile, grout, or mud and sand, he wanted to make that clear:) Also I didn’t take a good “before” picture, but imagine white laminate counter top across the entire wall, and an industrial utility sink… classy, I know.

He is NOT afraid to use that

He takes it down to the sub-flooring, has taken the toilet out… and is tearing into walls. Was I nervous… nah.

Who needs a toilet anyway?

Down to the studs? What a stud!

Wires and pipes and splinters oh my

Is that a blow torch? I had no clue we had something like that!! Does it work for crème brulee?

I was beyond impressed at this point

Photo shot through the new pocket-doorframe. You can see the new sub-flooring and all the plumbing is ready. I for one think it takes a brave man to move a toilet! (And a brave woman to let him)

Putting it back together again

Accessible sink and painted wall. The electric outlets have been moved. Aaron changed the light switch to a rocker panel, and he moved and lowered its location so that Lucy can reach.

Installed the sink to work with Lucys wheelchair height

Tile backsplash around the sink.

And the end result! TA-DA!

Lucy now has a place in our home where she can wash her hands… Oh the things we take for granted.

Bathroom Renovation Design for Lucy by Brian Clark Designs

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About Rachel Coleman

The opinions and late night musings published on this blog are Rachel de Azevedo Coleman's alone, and are not ever intended to represent the opinions and sentiments of any organization or product that Rachel is, was, or will be associated with. Rachel Coleman is the creator and Emmy-nominated host of Signing Time!, the children's American Sign Language vocabulary building series. She is also the creator and host of Baby Signing Time, Rachel & the TreeSchoolers, and Rachel & Me. Rachel now serves as the Executive Director of the American Society for Deaf Children, a 501c3 nonprofit established in 1967 by parents of deaf children. ASDC is the American Sign Language organization for families who are raising deaf children. www.deafchildren.org Motivated by her child, Leah's deafness, Rachel has spent the last 18 years creating ASL products to help bridge the communication barrier between hearing and signing communities. In 2006 Rachel founded the Signing Time Foundation, a 501c3 non-profit dedicated to putting communication in the hands of all children of all abilities. In 2014, the Signing Time Foundation launched a 50-Lesson online ASL curriculum called "Sign It: ASL Made Easy" that is available free-of-charge to families with deaf or hard of hearing children ages 36 months and under. Apply at www.mydeafchild.org. For those who do not qualify to receive Sign It ASL for free, they can find it for purchase at very reasonable rates on www.SignItASL.com. Rachel and her husband, Aaron, live in Salt Lake City Utah. They are parents to Leah who was born profoundly deaf, and is now a senior in college at NTID/RIT in Rochester, NY. They are also parents to Lucy who has spina bifida and cerebral palsy, and recently graduated high school. In 2010 the Colemans were joyfully reunited with Rachel's daughter Laura. Rachel is proud to be Laura's birth mom. Laura was placed for adoption as an infant in 1992 when Rachel was 17 years-old.

72 thoughts on “Unanticipated Milestones

  1. Bravo! Love the new bathroom. Lucy not only has a place to wash her hands – but it’s a stylish place too.

    Also – your suggested book titles are brilliant and hilarious.

    Thank you for sharing such personal insights about milestones and what to measure up against.

    • Thank you foropening the door to your world and struggles. It truely helps to read how much you have overcome and how much truth you hold in your words by making us realize how good we can have thing and we take them for granite. I have a three year old son diagnosed with Autism. When we first found out why he was speech delayed I felt as if some one had stabbed me in the heart. How ever I later realized the little face I wake up to each day and hold dear in my mind while he’s in school or I am at work is the same little guy. With or without Autism, he is my sunshine. You are a true inspiration to all of us with special needs angels!!! God Bless you for all you do and for sharing your life with us and giving us hope!!!

    • Rachel, wow how cool is that! My son also didn’t take a step till well after four years old without his huge walker. How proud Lucy must feel to be able to roll up and take care of herself. They deserve these moments. Thanks to you both my children have learned a ton of signs that we still use today! Keep up the good work and love on those who love you.

    • Rachel that is awsome. Just reading this post made me think back to my own son who has right hemiplegic cerebral palsey from a stroke in utero. He is not in a wheelchair but does wear a leg brace and took forever to learn to do so much. I remember all the “why me” feelings and it took me a good year to realize that he is amazing for who he is, what he is, how he is. I wouldn’t change who he is so why change what or how he is? He is a blessing. He is almost 8 now and I refer to him proudly as my hero. He has taught me so much! He in his own way has taken it upon himself to raise awareness about pediatric stroke. Check out our blog to see what he is doing!

  2. Loved the book titles too Rachel! The bathroom looks amazing and Aaron–WOW, I am, like, sooo impressed. Another great blog entry. You never cease to make me smile, and get teary, and rejoice over all that kids can accomplish when they have the support and love that they need. Have I told you lately that I love you and your whole wonderful family? Well, I do!

  3. You *can* use a blowtorch for creme brulee in a pinch, but the lower powered kitchen ones produce better results. Even if they are significnatly less awesome.

  4. I have to say that I was totally impressed when I saw the bathroom! I was afraid to use the sink for fear of making spots! It’s absolutely gorgeous, A did a GREAT job. I bet Lucy loves the freedom she has gained.

  5. Hi Rachel!

    I love the remodel and the working titles. I don’t know what diagnosis your late bloomer has, but I am a 29 year old that was a late bloomer. I was 1 before I could sit up on my own. I never learned to crawl. At 3.5 I started walking with a walker. I stayed with the walker through kindergarten. I actually taught myself to read before I could walk and talking was my favorite pastime. I did well in school at everything except math and handwriting. I still much prefer typing as my hands cramp up very quickly when I write. I break bones on at least an annual basis… 35 and counting. I have a myriad of diagnosis, none of which address a cause for the problems, only the symptoms. I have inflammatory arthritis, osteopenea, Vit. D deficiency, anemia, severe allergies, athsma, chronic bronchitis, and vocal chord dysfunction. I have had 15 surgeries and will probably have another in July. I am married to a wonderful man who is totally blind and have two beautiful children. I do believe there is hope. I continue to appreciate my own milestones and hope for a diagnosis, treatment that works, and a long future. In the mean time, I try to make sure every day is productive and never let my health rule my life. It is I who chose who I am, not the body I was born with. I appreciate your positivity and proactive means of dealing with what life gives you.

    • Lucy has spina bifida and cerebral palsy, her other issues are related to those two big ones. Lucy loves to read and doesn’t love math and handwriting. She has an amazing mind and has “total recall” for songs and lyrics. Her memorization skills are off the chart. She just took 4th place in her school Spelling Bee last week. We have always never treated our kids as their disability or labels. They are just our kids! Everyone deals with all kinds of different issues, some are just more visible than others:)

      • they still don’t know what I have, but it sounds like we could be kindred spirits! I was always placing in Spelling Bees too! I also love music. My husband and I met in a choir. Does Lucy sing well enough to sing in a choir? Or would she want to?

      • Hi Rachel
        I am addicted to your inspiring blog!
        Please put up new posts!!!
        And may you and your family continue to overcome obstacles with great positivity and out-of-the-box approaches.
        Did I mention – please put up new posts – I am addicted to your blog.

  6. I could so relate to this post. My twins didn’t walk until a little before age 3, didn’t talk until age 5. They are 13 now and function somewhere around a 7 or 8 year old level. They don’t talk in public or to anyone outside of the immediate family. The only diagnosis we have is reguarding the not talking, and that is selective mutism. Reciently we got communication boards for them for school. I had resisted this for a while. I justified it by saying that I didn’t want to give them a crutch. I know they can talk so why give them something to talk for them. Your post made me think that there may have been more to my resistance than that.
    But all in all the greatest gift my twins have given me is the ability to celebrate whatever the accomplish, big or small. It has made me a better mom to my typically developing daughter, their big sister.
    So here’s to celebrations, for big stuff and little!

    • Hello Kim:

      I have been a special education teacher all of my life. I think there may be more to this than selective mutism. If they are functioning with delays especially. Have you been to a neurologist? Just trying to help. Kelly

    • Lucy wouldn’t talk to anyone other than family for years, mostly because it took SO MUCH EFFORT and most of the time they couldn’t understand her tiny quiet voice. She would look at me in exasperation, like “What’s the point?” As she has gained vocal strength, and confidence through little successes, she has come so far. This morning she ordered two coffees with cream (in Spanish no less!) for her parents while we were getting her food at the buffet.
      *We are in Mexico right now for spring break

  7. It was harder to put our second child on the school bus in her wheelchair for the first time than her little bit older sister.
    I read one mother’s story that she said it is harder to emotionally to raise a child with special needs than when she lost her first child to SIDS because it is ongoing. I have 2 girls 24 & 29 with Joubert Syndrome. So is taking care of them 24 yrs. + 29 yrs. = 53yrs. x 2 (in stress years) = 106 years? Add on suicidal depression, (and child abuse) and it’s seems a whole lot longer. I don’t even see the tunnel, let alone the light at the end of the tunnel sometimes.

    • Sometimes it seems impossible, the amount of worry, courage, stress and hope that can go into just ONE day. In Lucy’s first few years a couple of her similarly diagnosed friends passed away. I was a wreck! I thought of all of the hours and tears, and therapies and planning that the parents had done and then… your child can just die? I was furious! How could a child just do that? 😉 I know it sounds crazy, but it was really something I had to deal with.
      (On a more personal note check out www.landmarkeducation.org and specifically the first course: The Landmark Forum. When I was ready to “go to the store” but really just keep on driving and never come back to my life, this program helped me find my strength, my purpose, and a pile of courage that I never even knew I had.)

  8. I have read that although it’s the number one pregnancy book it is also the most hated. I got a second hand copy after I had my son & didn’t think much of it. I have the others because I got them for free, but I never got around to reading them. I guess I didn’t miss much.

    • I was laughing last week wondering if there was something we should have you guys paint while you were in town:) Glad you were there to witness my family’s emotional implosion 😀 Couldn’t be more real, could we?

      • You know I was thinking the same thing… ‘what should I paint while here” LOL As for the family emotional implosion, thank goodness you are real!
        Next time the visit will have to be longer… or permanate 🙂

  9. Thank you for your honesty and sharing some of the emotional parts, especially the part when you realized you were resistant to your daughters first wheelchair, because it was about you and not your daughter. I think a lot of parents whose children have special needs go through that and don’t realize it. Heck, I think parents in general go through that. Life happens and makes no excuses.

    Beautiful bathroom! Thank you for sharing parts of your beautiful life with all of us! Thank you for your positive attitude, it brightens my day!

    • Tiffany, the wheelchair gave Lucy so much freedom! She didn’t resist it at all. I asked her today how she feels about her wheelchair and she said, “I love it! I can’t walk and I can barely roll over, so getting around would be terrible without it.”

  10. Thanks for sharing! Awesome job on the bathroom!
    Yeah for Lucy being a little more independent!
    I can totally relate to celebrating the unexpected milestones.

  11. Thank you for giving me a definition to what I have been doing with my own daughter. When you explained the sense of loss you feel when you have to let go of something ‘typical’ to no longer blending in…that is exactly why I have been procrastinating on becoming fluent in ASL. My daughter Ava is almost 5 and I’m coming to the realization that she still can’t talk. She has severe Apraxia as one of the many symptoms of Worster-Drought Syndrome. We have used all of your dvds to give her a way to communicate since she was 2 yrs old and she has been amazing in using it. I kept thinking by now she would have been talking so I’ve held off on becoming fluent and actually using this as her main language. Now I get why- you defined it beautifully. I feel like I’m giving up on her actually talking. And yet as I write this, that seems so selfish. And I realize it’s not giving up on that milestone- it’s just giving my daughter a language she can use to communicate. Were you overwhelmed at the process of learning ASL when Leah was first diagnosed? What is the best way to become fluent? Thank you for sharing your thoughts.

    • Christy, I just read your post to Aaron and he said, “YES!! IT IS THE EXACT SAME THING!” It is so NORMAL to feel like you are giving up on the hope of your child ever speaking, when you accept ASL as their first language… SO VERY normal. Now set that aside and imagine the FREEDOM you will give that same child when they have access to a language that REALLY works for them!!! (makes you want to RUN, not WALK and get it moving!) Speech is a skill that your child has her WHOLE life to master! It’s just a skill! Right now your child needs (NEEDS) a language and it doesn’t sound like it will be a spoken language. Hire a Deaf Mentor, look for a Master Signing Time Academy Instructor in our area www.signingtimeacademy.com if you have a Deaf Community Center go there and ask about classes, playgroups and anything else they have to offer.

  12. Any milestone is wonderful. Like you, two of my girls needed special attention over the years. It is the small things that have a big impact. Thanks for sharing. The bathroom looks great!

  13. The remodel looks great; so stylish that the naked eye wouldn’t think of it as being designed for accessibility.

    I have to agree about those WTEW books. My son was also born with SB, but the Occulta form, and the only things covered in the WTEW books were for the type your Lucy has. He still required surgery and still has issues to this day, but do they cover being behind in the milestones or the different milestones that come along with SB and SBO? NO!

  14. Gorgeous bathroom remodel! Thank you for sharing this.
    Our most recent unanticipated milestone was the celebration of my son being able to do his first jumping-jack at the age of 9. I cried like a baby.

  15. I am an OT and I love, Love, LOVE your remodel! It shows that functionality can also be elegant! You and Aaron did an amazing job!
    I also love how you all have shared your lives and through that given inspiration, support and hope to so many people.

    I am so happy that all your moments to celebrate inspire more songs!

    In a slightly (un)related note, my favorite songs on your DVDs have always been the ‘end credit’ songs (Show Me a Sign, The Good, We’ve Got Love etc). Sometimes I felt like the songs and their messages were written for me! So when you blogged about the birth of your daughter, Laura, I found out about your CD and thought – wow, that is perfect for me! (Somehow I had only shopped for DVDs and never looked at the CD section). But life is busy and I never got around to ordering that CD that was perfect for me. Fast forward to a few days ago: I had been entering your sweepstakes everyday, not even looking at the prizes; well, imagine my surprise when I won the CD “Shine.” Thank you so much to you and all your staff. I can’t wait to receive it and sing along with it to my little ones.

  16. I absolutely love the title “Unanticipated Milestones” because that’s exactly what us mommas deal with. We didn’t plan for this, but when it happens it is a milestone, some are easier to celebrate than others. You do a wonderful job advocating for the specialness of all children, Rachel. Thank you!

  17. Beautiful bathroom !! Thanks for sharing. We too, continue to celebrate milestones that others may take for granted. Our daughter ( hearing impaired and adopted from China in 2010) has just started doing so many things lately – jumping,babbling, talking, playing with chalk,puzzles… I feel like I am watching a butterfly unfold !!! ( and she LOVES signing time too)

  18. Oh the KidKart chair 🙂 I remember when my son got his KidKart and how hard I cried for the exact same reasons as you…I thought I was giving up on my little man ever walking (he also has spina bifida). Now we have a wheelchair and the other day we had a HUGE accomplishment of him pushing his wheelchair on the deck and maneuvering around his little sister’s bottle of bubbles! All the PT and therapy at school couldn’t get him to move that darn wheelchair on his own and here he gets a little sunshine and is a rockstar 🙂 My son just turned 6 the other day and we’ve had many of these accomplishments that you don’t ever expect to have as a parent.
    PS. The bathroom looks great!!!!

  19. Thank you for sharing your life with us. The Bathroom looks amazing, it is so nice to see that you can make a functional accessible bathroom that still looks beautiful, we all need more beauty in our lives. While both of my children are “normal” my brother was a preemie so I grew up being the other child in a special needs family. I think we often fail to remember that every child hits milestones in their own time, even the so-called normal ones, even parents of normal children worry about it. We just don’t realize that it’s okay. Thank you for inspiring so many people.

  20. Hey, how about “It’s not about me!”? I think that this title is what best describes the life we are living. Miss you all and wish that our “surgery family” was not so far apart.

  21. Beautiful bathroom!! For us, the most recent milestone was getting my son a tracking bracelet. He has autism and once in a while he escapes us (almost 10 years old and smarter than I am so it happens) ~ I know in my head that I am happy to have it, but my heart hurts when I realize I have to track my son like a dog because he doesn’t have the common sense to stay out of danger. So many emotions involved in raising these special kids, it is great to see them written down by someone who gets it.

    • Wendy, I just read your post and I totally understand…my 7 year old daughter is autistic and visually impaired so I am always worried about her wandering off. We have had 2 episodes where she went out in the yard without telling us and we couldn’t find her. You aren’t treating him like a dog…you are treating him like the gift that he is that you don’t want to lose. And goodness knows that we have enough issues to worry about so way to go for taking one out of the mix! Hang in there…we are all in this together with Rachel leading the way!! 🙂

  22. So nice to read another great Rachel story. Great because your writing gives us all something to relate to and uncovers an honestness about how we see ourselves and others see us as well. I have also been thoroughly enjoying the 10th anniversary interviews with the ST family.
    Super cool bathroom, and way to go Handy Manny, I mean Aaron. Just like the bathroom, sometimes we have to be broken down and rebuilt to be more accessible.
    Anita 🙂

  23. Oh, Rachel!
    You are a woman of wisdom! I was thinking this all along about my Grandson, Luke, but didn’t know quite how to express it!!! “Unanticipated Milestones” says it all. Luke has Moebius Syndrome and is more affected than average. We are just this week at 26 months celebrating that he is just starting to crawl a few steps. Last month’s celebration was that he could sit up from laying down. He is trached and vented and so does not speak. Baby/Signing Time has opened up a whole world of communication for him. Signing Time is the only show on TV or DVD that he actually watches/wants to watch. I think he learned the signs for ‘Baby signing time’ first – so that he could tell us he wants to watch it. He knows more signs than I do (I need to catch up)… Since Luke’s birth I have looked in disdain at all the baby books and development books out there. Luke has a Kid Kart also (his is red). Your family gives us all hope for our special children! Great job on the bathroom!!!! It is so great to have a handy husband!!

  24. You’ve shared so much and inspired me, my daughter, and my wife more than you know. I felt this was an opportunity to share something with you that may help.

    Several years ago I went through the worst time of my life. When I started putting my life back together I moved to rural Iowa to get out of some bad situations I had put myself in and used that time to get my head together. I spent a lot of time in quiet contemplation and had a number of epiphanies.

    One of the things I realized was that I was very focused on making others happy. But what was the point if I was miserable? So, what did I need to do to make me happy? I concluded that there is no such thing as a truly selfless act. We do things, no matter how good they may be, because they make us happy, they make us feel good about ourselves, they’re necessary, but we get something out of it.

    So when you ask “Why so personal, Rachel?” it is not only a valid question, but one that is necessary. I think I’m safe in saying that it makes you happy to care for your girls. It makes you happy to make them happy and give them every opportunity possible. I know I feel that way about my daughter. When she’s happy, I’m elated. When she’s sad, I’m despondent. I do everything in my power to be happy by making my daughter happy.

    Don’t apologize for making it about you. It is about you as much as it is about Leah and Lucy and Aaron. Am I selfish? Hell yes, and I encourage everyone else to be too. Just make sure you’re selfish for the right reasons.

    I hope that all makes sense, puts things in perspective, and comes out the way I mean it.

    Shine,
    Steve

  25. aaron is a rock star! i can say that officially now i think. 🙂

    loved this post. 🙂 things that life you…all about me…wonder how many all about mes you channeled when you wrote this? haha!

    love you lady. 😉

  26. I love reading your blogs. This one really touches home for me. I have felt that there should be a book that tells us what to expect for special needs children. I like you book title ideas. I to cherish all the small milestones that a lot of parents take for granted or never notice. Like the first time my daughter discovered her shadow, at age 5. My daughter has PVL, mild spastic quad CP, sensory processing disorder, developmental delays, fine and gross motor delays and speech delays. She is 7 1/2 years old and developmentally 3 years old. She is very small for her age so she looks like a 3 year old. She loves watching Signing Time and loves it when she sees Lucy on them. We taught her how to sign using your DVD’s. She didn’t talk until she was 5 years old, she is now at a 2 year old level in speech and still uses sign for words that she is unable to say. Sign is still her first language.
    Thank you for your inspirational blogs and your wonderful DVDs and music.
    Jenny

  27. I love the idea of creating a new blog category for the “Unanticipated Milestones”. We’re facing one right now: first replacement set of earmolds. Calyssa’s ears have grown so that the first set no longer fit tightly and her aids squeal. Never would’ve guessed I’d be judging my child’s growth by the size of her ears!

    • We still have all of Leah’s earmolds. Just couldn’t throw them away. I thought about taking a photo of them all lined up for this post. It seemed she outgrew her shoes and earmolds at about the same time, I swear!

      • I have kept all of my daughter’s ear molds too!!! I thought I was the only one 🙂 She has a CI now, so no more ear molds but I love looking at her first pair…they were so tiny (she was only 3 months old!)
        Reading your posts ALWAYS reminds me that it’s okay to celebrate the differences, and I love the ‘Unanticipated Milestones, there truly isn’t a better way of saying it!!!

  28. You are so right about the books “What to expect when your expecting” and “what to expect the first year.” They are good books and help ed some with my first daughter. Three years later I gave birth to a beautiful daughter who has Down syndrome. It came as a surprise and I remember laying there that night holding her wondering…so do they make a book for this? Things that I so took for granted would now be different? The next day in the hospital she had the new born hearing screening and she failed the test three times. I then thouhgt…ok so is there a book for this too? I left the hospital feeling overwhelmed and scared! A week later we learned that Maggie could hear and it was a mild/moderate hearing loss. At three months I had her signed up for PT, OT, Speech and we started attending a parent/infant program here in Maine. That was as when we were introduced to your Signing Time. Your DVD’s have changed our lives. At eight months Maggie started with her first sign “milk” and “mom” followed shortly after. From there Maggie just took off with the signing. She loves your DVD’s and we watch them daily. Now at 4 1/2 she is so much more verbal, but still continues to sign. I wish I used sign with our first daughter! I love the idea of “unanticipatted Miliestones” it would be a great place for us all to share! See you in Maine in May! Thanks for all you do! Amy

  29. Congratulatiuons to you all… I know you had been looking forward to getting that all set up for Lucy. Exciting!!

    Thanks for sharing…. you are a great mom!!!

  30. Rachel, I so look forward to your posts. Thank you for taking the time to share your incredible life with us. I love that the bathroom is accessible and stylish! Although my fav picture is the one of Lucy – what a cutie!

  31. wow….did I just find the post for me or what? 🙂 Your words are exactly what we seem to be living. My husband and i try to celebrate all of our daughter’s personal milestones. for us, it’s things like starting to babble at 2, stringing together multiple signs to ask for things independently, and recently learning how to crawl. I always seem to take each set of “bad news or failed tests” about my daughter so personally (even though I should expect her not to meet traditional milestones at this point!) for about one day before I can shake myself off and be reminded by something simple that she is the most incredible little person and I am lucky enough to help shape her into the incredible woman that she’ll become. Thank you for helping us to know that we’re not alone and also for giving us the gift of communication. without BST or ST, we wouldn’t have half of the words that we do.

  32. Congratulations on the beautiful new bathroom! I can only imagine how Lucy must enjoy this new special freedom.

    Thank you Rachel for being so honest and for putting into your own words what I’ve been sharing with my family and friends for the last almost 18 months. My son Tyler was born with hearing loss and while it’s not the worst thing that could ever happen to him or to our family – as a parent there is a natural mourning for what I’d hoped and wanted for my child. We all have dreams for our babies and – we’re going to have many a heartache as our children learn, try, fall, get their feelings hurt, and get back up in every area of life. I love how you have raised both Leah and Lucy with all their *uniquenesses* … just as your children. I look at my son Tyler and I pray that he’ll understand from me that everyone has differences and is special and gifted in our own ways. Some differences may be more evident on the outside. All we have to be is the best US we were created to be. =)

    Thank you for sharing your gifts of singing, writing, music and faith so that more of us know that we are not alone.

    Love and Peace,
    ~Lisa

  33. Great job on the bathroom. Yes, I agree that many people take things for granted. Thank you for your honesty.

  34. LOVE, LOVE, LOVE the remodel! Wow – Aaron is very talented!!!

    I recently stumbled upon this blog and I must tell you, Rachel that you and your family are SUCH an inspiration to me!!! I started teaching my daughter ASL when she was 8 months old and she is turning 2 tomorrow. She loves to sign and it has opened up a whole new world to her. We bought your entire collection and even my husband knows all of your songs and we are learning all of the signs as well. I knew he was hooked when he called me from work one day and mentioned that he couldn’t get the signing time theme out of his head!!!! Thank you for what you do to motivate and inspire children and parents/caregivers alike. Looking forward to reading more posts from you in the future!!!

  35. I worked with children with special needs in a grade school for 10 years and love reading your blog. I have purchased the complete signing time dvd sets and additional cds for my 4 grandchildren and they love them. One of my daughter’s daughter has a friend (she is 2 1/2) with Down’s who goes to a Deaf School and for a long time would not do what his teachers asked of him but would do what my granddaughter asked him to do, so off she went to school with him. She “speaks” sign language very well but only to people who she knows cannot hear. She will not sign much to the rest of us. I am on the other end of the milestone stick right now. I am taking care of my mother (in my home) with Alzheimer’s Disease and I watch her milestones slip away one by one. It truly makes you appreciate all the skills and things our bodies do that we take for granted. EXHAUSTED truly is the word for either end of the life cycle.

  36. You are an amazing mom. I have a deaf toddler who also cannot be measured by the same tests that they use to assess other children. I am so grateful for your videos, books, and your projected strengths and struggles. I feel much less alone in my own venture forward with Sawyer. I hope you come to the Capital Expo Center one day to visit your Virginia friends.

  37. You two never cease to amaze me! We’ve been Signing Time fans for years but I’ve definitely become a Coleman family fan, too! The bathroom remodel looks beautiful and just awesome how much more functional it is for Lucy!

    ~*~*~*~*~
    I am a teacher for children with Autism. April is Autism Awareness Month. I’m dedicating my blog all month to Autism Awareness.

  38. Pingback: Creating an Accessible Bathroom | UTAH SPINA BIFIDA

  39. Absolutely AMAZING! Love the entire post, love the “love” that went into creating that place for especially for your girl.

    And thank you so much for your honesty. As a spina bifida mom, I TOTALLY GET IT! My daughter has that silly apraxia too, and therapists seem to be so against my continuing ASL with her. Makes her too “different” and unable to communicate with anyone outside of our home. But GOODNESS, the girl has language!!!! How can that be bad?!?! (and she loooooooooves you, btw. She’s only 2, but requests that I sing the Signing Time theme everynight at bedtime. Except for us “it’s Signing Time with Mommy and Brooklyn… it’s Signing Time with Mommy and Brooklyn”…) I digress. 🙂 Anyways, thanks so much for the Unanticipated Milestones. It encourages SO MANY of us and our precious kiddos!!! It’s not about ME, but God gave her TO me, fearfully and wonderfully made. HUGS from Houston!

  40. Thank you so much for continuing to share your story. My 13 month old daughter was diagnosed as profoundly deaf at about 10 months. I am struggling with the decisions I have to make and am glad to hear that I am not alone. There are others who have felt that same way as I do through this journey.

  41. Milestones, such a tiny inconsequential word to most – huge to others. I am blessed to find you, your daughters, your nephew, your DVDs, and your blog. Sometimes it is what gets me through the day. Our children are very different – but it seems struggles, challenges and joys are universial. My older son Michael blew through the milestones to this day – talking and reading at ridiculously young ages – he still will not stop talking to me. My Sammy, will not stop kissing me, he is 4.5 and has a rare Chromosomal Disorder that affects him a little more than we are comfortable admitting – but we do not believe in limits and try to rejoice in all milestones. Yesterday, my 4.5 year old pointed (yes, isolated his index finger and pointed) to something he wanted. It was a huge day here, and it is funny that as thrilled as I am – it is hard not to see the same joy in the others faces with which I share these tiny triumphs because they just don’t get it because they can’t or don’t want to really understand the magnitude of the challenges ahead of us. I so relate to your stroller story, there are so many little items and toys that we need to outgrow or put aside (whether we have mastered them or not) that affect me deeply. We are transitioning Sammy from a crib shortly, and I am scared to death~! His fine motor is slow coming but I sign to him as much as I can, teaching my older son and husband – Sammy will sign – but not as much as I would like – but I perservere! Signing Time is the reason I can communicate with my son, and I thank you for it.

    PS_ Love the bathroom~

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