Archives for category: Special Needs Families

When I stop and think about it, one of the most daunting parts of my life is being a therapy mom. Because two-year-olds do not naturally choose to do things that are uncomfortable and difficult, moms play a major role in supporting the therapy process so that the child has many opportunities to practice the therapy exercises. However, making therapy fun for a toddler is a challenge! Day-in and Day-out we are always working on gross motor, fine motor, and speech skills and I am Nathan’s main therapist.

Therapy Mom

I thought I’d give a little run-down of the types of activities we include daily so he can continue to develop and hopefully achieve typical development one day.

  • Walking. This sounds ordinary, but considering that Nathan still struggles with basic walking, especially on uneven surfaces, it’s a super important part of our day. Now that he can walk, I ask him to do a lot more walking than I might a typical kid. If there’s ever a chance to walk on uneven surfaces – the bed, playground woodchips, ramps – I ask him to do it. And if he falls, I ask him to get up on his own so he can exercise those muscles too.
  • Climbing. Our therapist had a boy scout make us some solid wood, nesting steps for an Eagle Scout project and we use them a lot. They are scattered around the house, although sometimes we pull the together for a big climbing fest. We tried to place them in areas that will encourage him to climb up and down. I also have him walk up steps when possible to practice. Our library has the perfect size steps which are not too high and we often walk up those with me always verbally reminding him of the process of taking a step.
  • Using two hands. Nathan’s left hand has adapted well to being the dominant hand and he can do so many things with it. Too many things sometimes! His right hand usually hangs straight by his side and I have to remind him to “use two hands.” It could be in opening something, holding paper down while he colors, grasping something, turning book pages. There are thousands of daily ways to get his hand practice being used, but he often needs to be reminded. I have also come up with two hand tasks for him. When we have cherries or grapes, I do not de-stem them for Nathan. He gets the whole thing and de-stems it himself so that he has to use two hands. He thinks it’s great fun with the greatest reward at the end – fruit!
  • Right hand grasping. Because he doesn’t often choose to use his right hand exclusively, and for good reason, I have to set up tasks and tell him that he can only use his right hand. We might play with his shape sorter, but only use right hand. Sometimes we throw balls, but only with the right hand. He and I both love puzzles and we’ll work one with only the right hand. This helps his brain create connections and reminds it that his right hand is there and able to be used. It has slowly increased the amount of spontaneous use for that hand, but it’s not usually Nathan’s favorite activity which is putting it mildly.
  • Talking. Our speech to Nathan is filled with exaggerated and slowed down words. We often say the first letter over and over and then slowly say the rest. Then we’ll most likely ask him to say it too. Usually this gets a shake of the head as a response, and I will let it go. Early on we tried playing hardball with his speech to see if we could create enough frustration to get him to talk. It quickly became obvious that 1) hardball does not work with this child and 2) his speech problems are way more complex than playing hardball can fix. What often comes out is his best attempt and it usually sounds nothing like the word, but has the proper spacing and intonation as if it really was English. We praise him to the skies for trying to speak and when he does spontaneously talk, especially a new sound or word, we go bonkers and throw a little party. The praise works much better for encouraging him and tells his brain that whatever connection fired in his brain to make that sound come out was the correct one.

I’m sure from the outside, some of our life looks strange. Why is she making that boy get up all on his own? Shouldn’t she just pick him up? Why is she talking that way? I though kids learn speech best by being talked to regularly? Why in the world is she making that boy walk up those steps? I’ll offer to carry something for her so she can pick him.

I know it looks strange, but it’s all designed, with guidance from our wonderful therapists, to help Nathan achieve as close to typical development as possible. When I get discouraged and think that it’s too hard to think of one more clever way to fit in a therapy task, I just remember how hard Nathan’s bran is working to learn all these things. That gives me the encouragement I need to keep going so we can unlock all his potential. He’s a remarkable boy and it’s a pleasure to help him explore the world.

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Today is our first Forever Family Day – the day we met and held Nathan for the first time. These thoughts are inspired by the importance of this day.

Forever

On the spur of the moment I sing new words to an old song.

 I am your Mama

Your forever Mama.

I’ll never leave you, you’ll never leave me.

I’ll always love you, forever and ever.

I am your forever Mom.

*to the tune of You are My Sunshine

I then continue into another…

I’ll love you forever

I’ll like you always

As long as I’m living 

My baby you’ll be.

*to a tune I made up

and then I finish it off with…

I love my baby boy

I love my baby boy

I love my baby boy

to the moon and back!

*a song and tune I made up

Nathan breaks into a wide smile at the first mention of forever, but as I continue his eyes get serious, only an occasional flicker of a smile crosses like a bit of sun on a cloudy day. Most Mamas sing these types of songs to their babies, but not every child soaks them up like a parched flower as much as my boy does. He needs to hear these words. In the deepest part of his spirit is a place that isn’t quite sure that my love his forever, that this family will last, that he can trust me, and that he never has to be alone again.

You might have heard and taken as truth the idea that trauma that happens to young children does not affect them because they are too young to remember. This is a myth. Fiction. A lie.

When children, even babies, experience trauma, it becomes a part of them. Even before the sorts of conscious memories we associate with the word memory form, our bodies have an ability to remember. It gets hardwired into a baby living in an orphanage that they might not matter and that they cannot trust people to care for them. The way this works out in their life varies depending on personality and situation, but the damage is the same.

New mothers hold babies close, cooing, feeding, and staring into their eyes out of instinct, yes, but also out of necessity. This is how babies survive to grow up. Humans need to know they matter and that their needs will be met. They need to know there are constants in life that they can trust.

For a child who has not had early nurturing, who has known months of not having all needs met, who has been moved from placement to placement, fully capable of fear and sadness but incapable of understanding what is happening, life is forever altered. You can heal the scars with care and love and compassion, but you cannot go back and erase the damage.

So I continue to sing my songs and whisper my love in his ear, willing my words to reach down deep inside him and give him the assurance that I hope becomes his bedrock: that he is loved, that he matters in this world, that his life has weight and purpose, and that he never has to be alone again.

Weekend Links 2 7.20

Here’s a few of things I read this week that had me nodding my head:

Summer in The City – Heat Proof Makeup Tutorial

Lisa Eldridge is my go-to makeup consultant. I love how authentic and grounded she is and how she leverages her access and influence to help the everywoman feel beautiful. Her heat-proof makeup tutorial from this week was wonderful and I imagine will work well in our 100 degree heat as much as it does in London’s “scorching” 80s.

Lemon Ricotta and Almond Flourless Cake

This is a light lemony flourless cake that will be perfect on a beautiful summer/spring afternoon

When Families Fail Parents of Children with Special Needs

She points to two big reasons family can be out of touch with what a parent needs — good intentions based on decades-old knowledge and, yes, sometimes simply the general inability to be compassionate.

“They do not see all the work, the therapy visits, the doctor visits, the specialists, the research, the cost, the [evaluations], [Individualized Education Plan] meetings, the emotional drain it takes to produce this ‘cute little girl.'”

Ludicrous Things Said By Yoga Teachers

weekend links yoga

Alright Okay

Friends, there has to be a better way.

A better way to support one another when they are walking a painful path.  There has to be a better way to encourage and uplift and love without undoing the brutality of the journey, without negating the reality that for some, it doesn’t get “all better”.

This is about Love.  Support.  Encouragement.

Validation.

She isn’t crazy.  She isn’t neurotic.  She isn’t being ridiculous.

No matter what the outcome turns out to be.

Because it really will eventually be Alright and Okay.  It’s just that Alright and Okay are tricky words whose meanings change depending on the details.

And you want to be there for her in the case that she must navigate a new path to Alright and Okay.

The Importance of Doing Things Badly

God doesn’t hover over us with a hammer. He knows we need the freedom to do things badly. He stands cheering and waiting for the right moment to share His perfectly portioned wisdom.

While most people know that Postpartum Depression (PPD) is common, it’s not well known that Post Adoption Depression (PAD) occurs with the same frequency. I have first hand experience with it because I suffered from Post Adoption Depression for several months. Just as with PPD, PAD has nothing to do with not loving the child or not wanting to be a mother. It’s the result of the complex physical, emotional, and mental demands of motherhood.

It must have surprised people who knew how much I wanted to be a mom that I was feeling so depressed after realizing my dream, although I was also very isolated during those months so many people never knew. You don’t post on Facebook, “I’m so depressed I can’t see a future anymore.” Well, some people do, but I didn’t want to be one of “those” people.

My depression was triggered by many things. It was a challenge to hit the parenting road full throttle with a traumatized toddler with special needs. It was physically draining – from the jet lag, suddenly carrying around a 23 pound child all the time, and the sleepless nights. It was emotionally draining. I am an emotional person, it’s part of what I have to give to the world. I’m highly sensitive and empathetic and to experience the raw trauma of my beloved child was traumatizing to me. I’m not done with that yet. Maybe won’t be ever. God and I can talk that over face-to-face one day. It was also mentally draining. I’m the most introverted type of introvert. Alone time is what feeds me and I was suddenly never alone. Jason works long hours and it was all on me. Also, the learning curve for navigating his special needs, both from adoption and cerebral palsy was steep. And lonely.

In fact loneliness was a major theme of those months. Our social worker labeled us “pioneers”. I tried to suck some courage from that label, but it was cold comfort. I have no close friends or family who have adopted internationally. I have no close friends or family who have adopted a toddler. I have no close friends or family whose child has cerebral palsy. I also suddenly dropped out of my social circles. For months I barely saw anyone. It was just too difficult to make the effort and  friends and family didn’t know when it would be a bother to reach out to us and when it would be welcome so my phone stayed silent.

On top of it all was a crushing sense that I was disappointing everyone. Our friends and family were so excited to meet Nathan, but we needed to keep Nathan very close to home, protecting his tender heart and working hard on attachment while also making up for lost time with his therapies. This made people angry and they let us know. I do not like to make people angry – in fact it makes me physically ill to be in conflict with people – but I had to choose between doing what was right and doing what would make people happy.

Add it all up and you have a full-blown case of Post Adoption Depression.

Jason and I decided to seek professional help last fall. I found a counselor and spent some time working through all of these factors.

It turned out that the last one – disappointing people – was the crux of the matter. When I began to focus on what my actual responsibilities were vs. my perceived responsibilities, the depression began to lift. {You can read more of my thoughts on disappointment that I posted a few weeks ago.} I was also able to verbalize in that safe place some of the grief I feel about his rough start in life. It was the catharsis I needed.

I knew I was getting better on New Year’s Eve when I felt my usual excitement about the coming year and all its possibilities. Life felt livable and vibrant again. The challenges didn’t go away, but my hope came back.

My goal in sharing my story is to help you not feel so alone if you too are suffering from PAD. And if you do know someone who has adopted, be prepared to reach out. Your loved one needs you, but may not be in a place to ask for help.

I wear several “hats” during the week. Depending on when you peek into our life I may look like a house-cleaning-cooking casual Mom, a put-together-working Mom, or a teaching-therapy Mom.

Therapy Kazoo

Nathan learning to blow on his therapy kazoo.

 I usually describe myself to others as a stay-at-home Mom. By that I mean that my “career” is caring for Nathan and that is my number one job. It’s been my choice to take that on and I love it. I do about 95% of the care-taking as Jason is gone from about 6 am to 5:30 or 6 pm, and longer on days when he has clients after work. I’m able to fit in the housekeeping and cooking during these hours with my trusty toddler helper by my side.

I also work part-time. My goal is to do 20 hours of work and to try to fit in about 40 hours of work into those 20 hours. I don’t always quite manage the full amount, but whatever hours I manage to put in, I do cram full with intense, concentrated work. I work with my brother and Dad so the hours are flexible, but I do put aside specific time each week so 1) I can be sure I fit it in and 2) Nathan can have some consistency. I played around with his childcare for this work time the past year. What I found to work best is to have a babysitter come to our house for a full day, one day a week. Nathan does best when he stays in his routine and we were having trouble with night terrors and general dis-regulation when he was spending a day or two away from our home each week. My philosophy is that home is best, especially for the toddler/preschooler age.  I also have a second regular work day each week that varies in length depending on the week. Two weeks a month he spends a half day with my mom and his cousin on a playdate then comes home and naps so I work those hours, and on the other weeks Jason has a day off in the middle of the week and he is the primary care-giver those days so I can work. Other than that, my work gets shoved into nap times, early mornings, and late at night.

And finally, I am a therapy/homeschooling mom. Nathan has three therapies: Physical therapy, Occupational therapy, and Speech therapy. The therapists come here to our house so we have 2-3 appointments each week which I schedule to be on one of my three non-work weekdays. Each therapy comes with its set of “homework” for me and Nathan. We do gross motor tasks, fine motor tasks, and speech tasks constantly throughout the week. Trying to get a toddler to do uncomfortable, body and mind-stretching exercises is a not easy and I spend a lot of brain time coming up with ways to sneak it in or make it seem really fun. Some weeks we are extra busy when we have a doctor’s appointment or two. We do some basic preschool work with him. I use June Oberlander’s Slow and Steady Get Me Ready and mix and match activities that will work with his delays and suit his personality. Each week we pick a letter and number from his alphabet and number posters that hang on his wall. We will talk about them during the week and find things that begin with that letter or have that number of items.

In my “free” time I write, blog, read, watch movies, and hang out with Jason. All of those activities are usually in the early morning or after Nathan goes to bed, although I do try to take a couple nap times each week to just relax.

I wish we could do more playdates or that I could get involved in a Bible Study, but I have yet to find a way to fit it around his therapies which take schedule priority.

So that’s how I fit it all in each week. Rinse. Repeat.

Celebrating with Special Needs* This picture isn’t really related to the post, but it’s so adorable I had to share.

A holiday is coming up. Maybe even your favorite holiday. Dreams of relaxing and celebrating, enjoying good food and time together as a family bubble up in your brain. You hope and you dream and….then reality sets in.

Life as a special needs family can be lonely. So many typical family activities are not possible for one reason or another. But, after awhile it’s easy to live day-to-day in your reality because, well, it’s your reality. It’s your normal. And it has to be done. But on a holiday when everyone is celebrating it can magnify just how atypical your family is.

As a mom of a special needs child, I spend a lot of time doing therapies, working on the back-end coordinating care for my son, and protecting his time so he gets plenty of rest and good food and a calm environment so he can spend his energy learning and growing. I don’t have a lot of time during the week to foster relationships with other moms. Going to playgroups is not an option when you’re trying to fit in 2 or 3 therapy sessions a week, plus other doctors appointments, and work to earn a paycheck. Weeks go by without me having meaningful conversation with anyone but my husband (I don’t count talking to therapists about my son). Then a holiday comes up. I of course haven’t had time to plan anything, and everyone else has made their plans without me because people forget to ask because I don’t have time to put into making the relationships a priority week-to-week. This isn’t anyone’s fault. It just happens.

So here are some ideas I’ve come up with on how to make holidays a celebration, even if they really end up looking a whole lot like a normal day.

  1. Special Food. I love to eat. I love to eat seasonally. There’s always something I can cook or prepare (or grab from a restaurant) that will help us experience the season at its best. Watermelon in summer. Apples in fall. Coffee in winter. Asparagus in spring. Plan a special holiday menu that feels special, even if you’re eating it at home at 5:30 pm so your toddler can get to bed on time.
  2. Special Movie. We may be the only ones who do this, but Jason and I categorize movies by season. In summer we watch 500 Days of Summer and Elizabethtown, in fall we watch Amazing Grace, in winter we turn on a Bourne movie and you get the idea. We also always watch certain movies at Christmas (White Christmas, Desk Set, and It’s a Wonderful Life) and on November 5th we try to fit in time to watch V for Vendetta.
  3. Special Music. Turning on tunes that fit your mood, or maybe change your mood to something more celebratory, can turn a ho-hum evening into something fun. It could be Jazz, Top 40, Broadway, Country. Something that fits.
  4. Special Time Alone. I think on the spectrum of toddler TV watching, I’m on the conservative side of moderate. Nathan watches Curious George almost every day, but only for little bits and he doesn’t really know about other options. But the occasional extra TV viewing that allows me to have some refreshing time alone will not hurt him. That way, even if I’m solo-parenting on a day when most people are celebrating a holiday, I can get a “mini-holiday” on pinterest or in a book or in the shower.

Cheers to celebrations!

I don’t feel like I have adequate words to express what I want to say, which considering what it is seems strangely appropriate.

I did a lot of preparation for motherhood. I built on my natural mothering instincts, which were strong, with classes and books and an insatiable interest in what motherhood would bring. Our son’s cerebral palsy diagnosis put a different spin on these preparations and I’m not sure I was able to fully come to grips with what this new life would be like before he came home. But I soldiered on, and we all fell in love, and we’ve dug in and worked hard and been so rewarded. This has been a sweet year, beyond my imaginings in many ways.

But almost one year later, it’s beginning to be obvious which delays will be short-lived and which are probably around for the long-haul. And realizing this makes me catch my breath sometimes. And feel tired. Then I feel bad for being tired because I love my son so intensely and fiercely and it feels like a failure to admit this is so hard.

But the truth is, it’s so hard. It’s hard for all of us.

I long to have a conversation with him. A real conversation. He is a bright boy, and that’s not just coming from my say-so. His doctors and therapists marvel at him, estimating his development in almost all areas to be months to years above average. Having all those big boy thoughts and all those important memories trapped in a mind that is making it difficult to speak must be so frustrating. I know as the Mom I just wish I could fix it. I wish I knew what it was and could tackle the problem and make it go away. I’d get violent if I had to. For him, for me, for our family.

Until we can break through, we will make do with our dozens of signs and gestures and pointing and guessing. I will turn and look at him hundreds of times a day, making eye contact, suggesting words and ideas to see if that’s what he meant to tell me. I will repeat back the word for every sign so he can be sure I really understood. We will celebrate each new sound that makes it past those lips. And we will pray that God will open the channels from his mind to his voice so we can learn even more about this remarkable boy we call Son.