Advice I wish I would have followed

In the wake of having a child, especially one with special needs, comes lots of advice. Most of it unwanted, some of it helpful, and a few pieces truly worth listening to. I know I probably either read or was told most of this advice at some point, but I think I was too busy with what was going on at that time to really absorb it. Looking back, these are the things I would tell myself to really take to heart.

Allow yourself to grieve

My mom is so wise. I am finding this to be more and more true the older I get. She has probably always been this wise and I’m just now realizing it, or more likely just now heeding her advice. Right after we found out Noah had Down syndrome, she told me to allow myself to grieve the loss of the child I was expecting. This was some of the best advice I have been given. Everyone expects a healthy, typical baby. No one hopes that their baby will end up in the NICU or have developmental delays or have issues feeding. There is nothing wrong with those expectations. Likewise, there is nothing wrong with grieving that loss.

Stop googling

Seriously, put the iPhone down and STOP looking at what websites tell you to expect of your child. I was so bad about this during the first few months. To some extent it helped to have a general idea of things that I should be aware of or prepared for. But the majority of the time it went something like this:

Noah has small red spots on his stomach. Google “red spots and Down syndrome”. Learn that these red spots are called “petechiae”. Continue reading about petechiae and learn that this can be a sign of leukemia, which you know from prior research that children with Down syndrome are at a higher risk for. You start to freak out. Look at the clock and realize it’s midnight and you’ve been researching on your phone for 2 hours. Shake your husband awake and tell him you are worried that Noah has cancer. Become angry when you are met with “He’s fine. Go back to sleep”. Go downstairs to the computer and email your doctor a photo of Noah’s petechiae and ask if we should be worried. Feeling more at ease, head back to bed. Just as you fall asleep, Noah starts crying. Wonder why you were awake while he was asleep and vow to never google again. Then do the same thing the next night.

More often than not, time spent reading about all of the many health issues that Noah might be susceptible to was wasted. Instead, focus on the positive and read the uplifting stories about incredible individuals who happen to have Down syndrome. 

Trust your instincts

You know what is best for your child. I wish I would have believed this more at the beginning. I had read all of these blog posts by other moms about how you have to advocate for your child and to not take no for an answer. I would always roll my eyes and promise myself that I was not going to be that mom. I didn’t want to have to fight every doctor and therapist tooth and nail to get my way. I didn’t want to be that mom questioning everything and always asking for more. However, what I’ve found in the past 17 months is that you do have to be an advocate for your child, especially one with special needs. That’s not to say that professionals are wrong or don’t want to help. We have some amazing doctors and therapists on Noah’s “team” and I put a lot of faith and trust in them. However, no one knows your child like you do. Bottom line: if you feel like you are not getting the care or answers that you need, switch to someone who will. The first physical therapist that was assigned to Noah was just okay. She seemed to do just enough for me not to complain, but not enough for me to be happy. I really didn’t feel like she was the best fit for our family. After a couple months, I finally got the courage to request a change and I am SO glad that I did. This blog post by Noah’s dad (not to be confused with Cameron, this is another boy named Noah whose dad has a popular blog) was really what motivated me to seek a change. His post says that a therapist should be encouraging, patient and invested. I wanted this for Noah. This person came to our house once a week, I wanted it to be someone whose presence we welcomed and not dreaded. After requesting a change, we are so happy with our therapist and it has made a huge difference. Trust your instincts, mamas usually do know best.

Give yourself a break

At the risk of sounding selfish and rude, I am advocating for preserving your personal well-being. You don't have to be happy all the time. You don't have to be a Pinterest-perfect mom. You don't have to pretend everything is okay. If a stranger in the grocery store asks how old your child is and then proceeds to tell you all of the incredibly advanced things her grandchild was doing at that age, please don’t feel like you have to engage that person in conversation. If a friend makes a comment that you find offensive, say something. If you feel overwhelmed emotionally by the thought of going to a 1 year old’s birthday because seeing typical kids the same age as your son is difficult, then by all means don’t go. If you’ve spent 4 hours at Seattle Children’s Hospital bouncing from one appointment to another and you want to treat yourself to a 1,000 calorie blended mocha even though it would be your second one of the day, do it. I’m not saying to be rude to people or to always let your emotions guide your actions. I just know that I’ve spent too much time worrying what other people think. I’ve learned that sometimes you need to do what you what you can to maintain sanity. And sometimes that means not saying yes to every invitation, or not being the perfect hostess, or speaking out against insensitive comments, or allowing yourself to be indulgent every once and a while. Don’t be too hard on yourself.

Enough is enough

Now, I don’t mean this in the way that your parents used to yell at you when you had driven them to their breaking point. I mean that whatever you can do for your child is enough. Just do your best with what information you have and what you can handle at any given time. You can’t do everything and you don’t have to. I read some blogs that make me feel overwhelmingly inadequate with what I’m doing for Noah. Should I have Noah on dozens of vitamin supplements? Maybe should we transform our spare bedroom into an in-home gym optimized to work on his low muscle tone. Noah’s current therapy of once or twice a week is nothing compared to some kids. Would once a day be better? And there are so many options: physical therapy, occupational therapy, speech therapy, craniosacral therapy, massage therapy, aquatic therapy, hippotherapy (does not involve hippos, just horses), the list goes on and on.

The perfectionist in me still struggles with this. A year ago I would have wholeheartedly disagreed with this “good enough” mindset. I was all about 100% all the time. The reality is that you can’t always give 100% and even if you can, you can’t sustain it 24/7. Plus, kids need time to just be kids. While Noah can benefit from therapy to address his low muscle tone, he can also benefit from me just sitting down and playing with him, or getting a visit from his Amma, or by Cameron playing the guitar for him, or from watching Landon. You will always feel like you could do more, but more isn't always better.

Comparison kills joy

Mark Twain hit the nail on the head when he said “Comparison is the death of joy.” It is so, so hard not to compare your child to other children. It’s ingrained in our culture, this focus on milestones and development. I can’t tell you how many times I’ve wanted to scream at someone who innocently says “Oh, he must be walking all over now!” or “How many words is he saying?” when they find out I have a 17 month old. I know those are completely normal questions and statements, so I can’t hold it against anyone. But it drives me crazy how focused we are on milestones and accomplishments, even for our little babies. Why can’t people just ask how he’s doing, or ask if he’s happy, or just say that he’s cute and end there? My advice is to try as hard as you can not to compare. Maybe that means removing Facebook from your phone so the comparisons aren't staring you in the face. But for me it is more of a mindset change. Letting go of expectations and allowing Noah to do things in his own time. My sweet boy is exactly who he's supposed to be. I can't change him and I don't want to. I can only celebrate who he is and what he is doing right now.

Jess

Tagged as: Noah, Down Syndrome
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Comments (23)

Katrina

January 2nd, 2015

5:59 pm

Amen!
 

Lynda F

January 10th, 2015

2:26 pm

Jess you are a wonderful mom, wife, daughter and special neighbor kid. We love you!
 

Shellie

January 10th, 2015

3:31 pm

Fantastic advice. Thank you so much for sharing with honesty and vulnerability.
 

Carly

January 10th, 2015

6:31 pm

Jess, I really enjoy reading your blog. You so courageously share such vulnerable and personal reflections and scenarios. It is inspiring. You and Cameron are (from what I can tell from afar) fantastic parents! So much love for you and your family.
 

Gloria

January 10th, 2015

7:47 pm

I love this! And SO agree. Thank you for wording this so perfectly. I would add one more: Learn to ignore other people (tuning out the things that aren't relevant, the advice that's not appropriate, etc.). :)
 

eric jonsson

January 11th, 2015

2:27 am

Nice read, tomorrow is a great day.
 

Marren

January 11th, 2015

3:09 pm

Jess you are an inspiration to all mothers. I hope I can be more like you.
 

Judy

January 12th, 2015

12:03 am

Well written and spoken from the heart.
 

Kelsey

January 13th, 2015

3:34 pm

WOW oh WOW! My nephews are the luckiest boys in the world to have you as their mom and my brother is VERY lucky to have you as his wife and I am VERY lucky and truly blessed to have you as my sister. You are truly amazing and what great advice. LOVE YOU!
 

Megan

January 14th, 2015

3:37 pm

Your words really hit home for me! You so eloquently wrote about all of the things I have been struggling with as well. Thank you!
 

Sheryl

January 29th, 2015

12:12 pm

I absolutely love this and I relate so much to your mindset on things. Especially with "Enough is Enough." I'm a single, full time working mommy. As much as I would love to be more diligent with therapies for Jadon on a daily basis, it just doesn't happen. I've made complete peace with that. Plus, it also allows for mommy/son time where I do just sit and play with him. I never want him to feel like mommy is the drill sergeant and we have to work, work, work. He's a toddler...who does what toddlers do. Who am I to rob that from him. I work with him, don't get me wrong, but there comes a time when "enough is enough." Oh and as for the 1,000 calorie blended mocha...yes, I do indulge that. Momma needs her sanity and somehow, I gain it through espresso/caffeine lol. I also have stopped googling so much. My goodness the torment that put you through and the thought provoking "illnesses" that we swear our little ones have because of Google...ugghhh. I know I do not know you, but I can most certainly tell you are a great momma! Your words say so, and the passion and realness in them as well! Thank you for this!
 

Courtney

January 31st, 2015

11:58 pm

Jessica-thanks for writing this. I hope I can meet you soon at a playgroup or other event. My baby boy with DS is 16 months.
Also loved the article on the sleep study. Very detailed
 

Angelica Humiston

April 21st, 2015

3:44 pm

Thank you Jess! I was feeling blue today about everything because during my son Physical therapy I was told that there might be something wrong with his eyesight. So I went back to that place where I felt like grieving, and just a reminder of the DS. I read this and I feel better now. I love my son just the way he his. ♡
 

Nancy

April 21st, 2015

4:44 pm

Came upon your story on Facebook just now.......wanted to simply say that there will be good and bad days ahead, just as with any child........BUT you will encounter MANY very special blessings because of this "little one"...........I know, mine will turn 55 in a few weeks..........God Bless!
 

Sawnya

April 21st, 2015

7:44 pm

Thank you for sharing this :)
 

Ashleigh

April 21st, 2015

11:56 pm

Awesome! Love the bit about the 1000 calorie drink. When my daughter had open heart surgery at Seattle Children's we spent over $200 at Starbucks! I don't want to think about the calories but the cafe was ghastly. You can check out our adventures at www.ambitiousviolet.tumblr.com
 

Tonya McLouth

April 22nd, 2015

2:46 am

Thank you for writing this post~ in here you have said what I could not find the words to say. As the mom of a 3 week old baby girl with Trisomy 21 and a heart condition, I needed to know that someone else was thinking and feeling these things.
 

Lou

April 22nd, 2015

3:22 pm

Our Bella is DS. All you need to do is love.
 

Grace

April 23rd, 2015

12:02 pm

our son, age 21 was born before internet access.... i count this as a blessing! we did get books from the library (some horribly outdated) and soon learned to look at the sources, and dates they were quoting. our best contacts were other parents who had kids with ds, and we met face to face...at least monthly, if not more. today, we still have a core group of friends from 'those days so long ago' who have inspired, encouraged, and pushed us to do what is best for our kids. hugs to you.....enjoy your journey, document your joys, document your sorrows, and keep on writing! you are great! (ps my so now tells everyone he is old enough to drink...aaarrrghggghhhh....just wait!!!)
 

Valerie

April 23rd, 2015

12:44 pm

I'm a a motjer of a 30 year old daughter with DS. If I could give one more piece of advise would be sarcasm is a lovely thing . Enables you to put people in their place with a smile.
 

tanya gwizdalla

April 23rd, 2015

3:49 pm

Thankyou for sharing your beautiful raw and honest story. I can relate to lots of it...our son Rafael was born in 2001 with down syndrome and I too grieved for a day or too on the son I thought we were going to have and very quickly came to realise we were in for a different kind of wonderful journey with Rafael, when i watched my now ex husband who is the greatest Dad ever walk down the hospital corridor with his arms wrapped around Rafael I saw a beautiful love story emerging and to this day he would climb mountains swim oceans and anything else difficult for his son. The most challenging for a while was strangers or not so close friends saying "oh I'm sorry" it took me not very long to return the line of no actually I'm sorry you don't have a child with down syndrome because we feel very blessed to have him in our family he teaches us every day presence to be in the moment to be grateful and to see the simplicity of everything admist the seemingly complexity of raising a child with special needs. 7 months later we added CF to DS he has cystic fibrosis as well and somehow down syndrome took the back seat for a while. He brings such a beautiful texture to our lives and many others and not a day goes by we don't feel blessed cliche i know but very true for us. He has a great sense of humour and a very big heart, he knows he has CF but doesn't understand the full implications of what that means and we are grateful as he takes everything in his stride. To be the "guardians" of Rafael is a gift and yet we treat him the same as his brother who is extremely close and protective of him at 11 and 13 they still snuggle together to sleep.
 

Debbie Lorenz

April 23rd, 2015

10:54 pm

You have a great attitude and Noah is fortunate to have such a loving mother. I have a 19 yr. old daughter with DS and she is the joy of my life - she's given me far more than I've given her. One thing I think you'll realize as Noah's growing up is that you'll always need to readjust your expectations. But, this is true with any child. My Katie wouldn't be considered high-functioning in the sense of being able to go to college or work outside the home, but I've made my peace with this and I just celebrate who she is in all the moments (even the difficult ones). She does have one extra special gift though. She has a sixth sense that tells her when people are hurting emotionally and always is there for them with a understanding and compassionate hug. She's been this way since she was a little girl and has blessed many people with her hugs. She has four older sisters (all grown and married) who love her dearly so I never wonder who will love & care for her when I can't any longer. And without that worry, it frees me to live in the moment with her and enjoy our day-to-day lives. Which, by the way, I can't imagine without her!
 

Jodi Baker

April 24th, 2015

6:47 am

I can relate.... I remember thinking what would mine want to hear me say in response, what would they wait to see.... And I thought.... "They are great, both of them have special challenges but they don't even seem to know it! She is a go getter, I can't keep up with her. And she is miss priss! And you should hear them sing!" ....... I guess I realized sitting there in their strollers must be hard not seeing mom light up about them... Always hearing me say they have special needs... And hearing my sad voice... I decided to light up about them when asked.... Granted in my soul tears for more reasons than other mothers will ever realize still flow.....
 

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