Thursday, January 26, 2012

Help A Mom Out: What's your best advice for a new mother?

Every week, I get emails from new moms who read this blog. They often say they're heartened to see how well Max is doing, which is heartening to me. But they're anxious about their babies. They write about struggling to come to terms with what happened, how isolated they feel from friends and family (and even their husbands), how overwhelmed they are. They want information on what they can do to help their babies. They want comfort.

Yesterday I heard from Jewel, a mom of three. Her youngest, Jemma, is 13 weeks old; she had a brain bleed in utero. Jemma has some weakness in her right arm and hand and isn't lifting her head up yet on her tummy. She's on seizure medication. "She now smiles and coos and loves to interact with people and be talked to. You can tell she wants to laugh," wrote her mom. "Any advice with what to do with Jemma, watch for, bring up to doctors/neurologists, tests to ask for and how to better interact with her, I'd love. It's taken me 13 weeks to reach out and look for people/information. I realize it's much better to relate and talk with people who have experienced the same things than to try to conquer/live it alone."

I shared some thoughts with her, and then I said I'd reach out to all of you to see what you wanted to say. Some of the stuff I think is key during that first year (and afterward) when you're a new mom to a child with special needs:

• Get your baby lots of therapy (aka therapy up the wazoo). We had Early Intervention come and do an assessment on Max a couple of weeks after he was home for the NICU, and before that kicked in I was taking him to private therapy. Doctors couldn't tell us what Max's future held, but they were unanimous on one thing: getting babies therapy during the early years of their life, prime time for development, is key.
• Get yourself help. Take up friend's and family's offers to babysit or do things around the house. If you can swing it, hire a sitter once a week or more. You've been through a trauma; you need time to process, heal and get your favorite kind of frozen yogurt, if that's what makes you feel good.
• Find ways to enjoy your child and block out the worries. I've written before about dressing Max up in super-cute outfits and doing photo shoots with him. Going to the mall where ladies in stores would coo over Max helped, too. It focused me on his baby deliciousness and distracted me from the medical hell.
• Don't O.D. on doctor visits. When Max was an infant I made the mistake of making appointments with doctor after doctor, searching for answers about what the future held for him. Nobody could say for sure. Then I met a doctor who did give me his opinion. He said Max's future looked "ominous." I cried hysterically. After that, I mainly stuck with our kind, encouraging, realistic yet optimistic pediatric neurologist. He gave me hope. That's what I needed most in that first year with Max.

What information and/or words of encouragement do you have for this mom? I know she'll appreciate hearing from you.


  1. Carve out time for yourself. Exercise. Get family to help you. You won't be able to think clearly and make big decisions unless your own health is cared for. Trust your gut instincts when you meet doctors and other professionals. Find people to reach out to through blogs. Read as much as you can. Learn the medical terminology. Celebrate the small achievements.

  2. That's my advice as well, make time for yourself and exercise. If you feel good mentally and physically you can handle things a lot better in the long run. and definitely take one day at time. that is my motto!

  3. Try to enjoy the beautiful moments with your babies. Try not to compare your baby to others, as hard as that may be. It will only hurt you. Photoshoots is a brillant point, we do one each year and after I see our pictures I am on cloud 9 for days!!

  4. I guess I have a bit of a different perspective. In retrospect I'm glad that we had little therapy early on because I was able to more fully bond with Ben without the constant stresses of achieving 'goals' and being a mommy therapist. I got to be a 'mom' for a little while.

  5. My daughter is only 2 1/2 years old, so I haven't been doing this very long, but one thing I did do was only do what I could. I found certain things such as birthday parties etc. (and still do) challenging. Try not to turn into a full time therapist or you will miss the fun stuff. Everybody says it, but there's no way to know the future, which was especially hard for me! I constantly googled what my daughter was and want doing to see where she might be. It was unnecessary stress in the end. Seek out support from other special needs parents. I remember when my daughter was 10 months old, we met a boy and his family who had in utero strokes and we left feeling great. You aren't alone!

  6. I'll agree with the exercise -- regular yoga makes me stronger, more energetic, and feel better about myself. I'd also tell her to trust herself and her gut -- it is hard when faced with such big scary issues and the big smart specialists that go along with it, but remember that no one knows your child better than you do. Ask questions, use the fabulous resources for research and social connection that the internet provides, and know that there are lots of people out there who know first-hand what you are dealing with. If we can do it, so can you!

  7. my advice is that it's okay to grieve for a bit if that's what you need to do. and if you feel like no one else understands your grief, go find a parent of special needs support group or a therapist who does understand. i guess it's along the same theme of taking care of yourself so that you can take care of your child.

  8. As a dad of a special needs child, and a husband to his mother, I would have words of wisdom to the fathers: "man-up" and not only be a support to your wife but take on responsibility as well. I sat back for a while and grieved about not having the "perfect" son but after a few days of carting our other kids around and having to care for them while my wife spent the first month in the NICU with our son I developed a new appreciation for what she does. I wrote this blog post as we approached our 20th wedding anniversary last year In good times and in bad...
    If you have a husband that needs to talk, I am available...Kevin

  9. Understand that your daughter now has her own timeline for milestones - and that's okay!!

  10. Definitely time for yourself, that is important, even if it is just a hot shower in the morning, some time to gather your thoughts.
    And trust your instincts, you know your child better than anyone else.
    Simple goals help,too.
    Every evening I make a list of five easy things to do the next day, and if I achieve them I consider the day a success. Today's list was : hug , read a story about space , draw ,watch "charlie and the chocolate factory" and do the laundry. It's not much but it helps feeling like we got things done!
    I think the most important thing to remember is that as long as you are doing the best you can - you are doing enough. Don't feel like you are not.
    Hugs to you!

  11. I agree with everything Ellen said. As usual, it's timely and helpful.

    I also agree with the over-therapy part. Just like any injury, brain injury heals faster and better, the earlier you get to it. Though the brain doesn't completely mature till you're there's time to make improvement.

    There's plenty of ways to make therapy and bonding work at the same time. Since my son has sensory issues, I used babywearing. I also took therapy breaks.

    As far as the future, no doctor can tell you exactly what will happen. They can only make an educated guess. So if someone gives you a bleak outlook, just ignore it.

    I love the photo shoot thing! I do that too! It's great!

  12. Enjoy your baby! I didn't do that enough because I was so upset. Be nice to yourself. Take things 1 day at a time. And definitely seek out other parents who can relate. That was a HUGE help to me.

  13. I think that is perfect. Therapy therapy therapy and more therapy!! Also finding others to talk to, either online or in person.

  14. There is no better advice than to love your child! When my son was born he suffered a major stroke. The neurosurgeon in the NICU told me that there is nothing more important than providing a loving and nurturing home environment. Those words have proven to be so true. He is doing things the doctors said were never possible. Rejoice in the small things! You will find that the love you have for your special needs child is like no is truly a gift!

  15. Find your child's strengths and run as fast and hard as you can with them. Brag about everything your baby accomplishes. You earned it.

  16. Please take yourself and your child/children out in public, not just to therapy, doctors visits, school, put to places like church, to park, to pizza, to the shopping center. Take your camera for pictures of your kids in these areas learning and enjoying life. Don't let other people make you feel bad, they are not in your shoes and do not see your childs potential.

  17. ditto Louise @ BLOOM & Bea's comments.

    More is not always better and quality counts. Find therapists that are a good match for you, your child and family. If you trust them, their advice is valuable and reassures you.

  18. This is all such amazing advice. And as it turns out, it doesn't just apply to new moms. I got a lot of good reminders here.

    To Anon #2, who mentioned taking your child out in "public"—bravo. I felt like I was in some sort of special needs ghetto that first year with Max, because our life was all about therapy and doctor visits. It was isolating and depressing.

    Joeee, I think the grieving is a long, drawn out process. It's most intense at first, and then it eases up. I wish I'd had blogs to read when Max was young. You can find amazing support and comfort in this space.

    Louise, I jumped right into therapy, so I never had the chance to be Max's mom without that in our life. I have no regrets but I do think you raise a great point about balance, as does Anon #1 who said "try not to turn into a full-time therapist." Over time you learn that not everything has to be about therapy and that it's OK to just PLAY with your kid and not feel guilty that you're not doing therapeutic exercises.

  19. You truly have to mourn for the child you thought you would receive and prepare yourself for all the beautiful things you will experience and learn in your new life. Also, make it a mission to prove doctors wrong. ♥
    I completely agree with the other Mom's. Eventually the dust will settle. At that time, do not to forget to take care of yourself or put yourself back on the list. I almost "lost myself" after a few years AND I ADORE my daughter. Please do not feel guilty for a few moments or hours alone either. Last but not least, surround yourself with positive, incredible people. {hugs to our new mommies}

  20. Your child will exceed some expectations that doctors and therapists set. Remember to take the time to enjoy those victories. Allow yourself time to grieve over the ones they do not.

    People are really just trying to give you hope when they share a story about someone they know with the same or similar medical issues that is now completely healed. Do not compare your child to that one; your child is not on the same timeline even though they may share the same diagnosis as another.

  21. congratulations to Jewel on the arrival of Jemma xx Hindsight is a wonderful thing and if I had my time over I would stress less, share more cuddles and less stretches, have more kisses and less crying, join a cp playgroup/mums group asap, access online support, access counselling for myself and trust that it will all be okay, you will be okay and your child will be brillant x

  22. As much as I agree 100% and echo all of the things said here, I find there is one thing missing that is CRUCIAL to your success and well-being as the mommy of a kiddo with special needs, and ironically, has nothing to do with Jemma!!
    It is IMPERATIVE that you carve out time for you and your husband! He will be your oasis, and you his, in this difficult journey. Remember not to forget about your marriage! The parents of kids with SN face an 80% divorce rate!! That makes me SO sad, because we are the ones who need each other the most!! MAKE yourself get away with your husband. I wont tell you, like a lot of new moms to spend that time not talking about Jemma, I'd encourage you to really hash out your feelings. He is feeling all the same things you are, and is probably the safest person to reveal those sometimes dark thoughts to. You need each other more than ever now, and making time for your marriage will remind you of those vows, "for better or worse". You two are in this together, the team is ALWAYS stronger with two than one.
    You will do all of the necessary medical things for Jemma because you are her mama, your instincts will kick in and you'll naturally become proactive. Your other children will continue to thrive and become wonderful compassionate kids because of their sister, it's a natural progression. But your marriage will be the thing you need to work at, it will be one of the first things to be neglected, because it's not instinctual. If you already have a great marriage, it WILL be tested. But I GUARANTEE, a regular date night every week, or every other week will make you feel like you can conquer anything!! I KNOW I could not have survived the last 8 years of my life with out the love of my life, and I know he feels the same way. He and our marriage is what makes me continually feel normal in a life of ab-normalcy!

  23. Our son requires blood sugar checks (and response to that) approximately 3 times (or more) each night. My (fantastic!) husband and I alternate nights. This way we each get 3-4 nights per week of good sleep. It's a great set up for us. Early into diagnosis I never thought of rearranging rooms (thinking outside the traditional house set up box)to accomodate our new nights. Once we did and moved things around to all be closer at night - things are much easier. I also use my night "on" to stay up late and work on projects/or clean house. I figure if I'm gonna be tired the next day why not enjoy (or be productive) during "my shift." Staying up in a quiet house from 11pm-2am can be kinda nice :) ...once in awhile.

  24. Billy, who will be 56 tomorrow, has Down syndrome. He was born at a time when we had no early intervention or other services. The pediatrician who diagnosed him said "Take him home and love him." This is the best advice I can offer.

    In our ignorance we raised Billy like our other children. Now, as a responsible adult, he has a part time job, ushers in church, and has a strong sense of responsibility.

    I know it's hard to look toward the future but it starts now. My good wishes to all of you young parents; your life will be challenging and rewarding.

  25. My advice to a new Mum is TRUST YOUR INSTINCT. In my nearly 9 years of parenting a special Princess, I have learned that so far, with the big stuff, I have been 100% right when something has been wrong or not tracking as it should.

  26. There is so much good advice here from allowing yourself to grieve, to getting lots of therapy, looking after your marriage and yourself.

    I think it is very important to not cut yourself off from your old life. By that I mean, don't lose your old friends, stay in the real world. You need your new support systems and friends but you also need your old support systems and old friends.

    Be normal, do what you would have done with your beautiful new baby. I know your life will now fill up with appointments and therapy but there is still time for beautiful long hugs, coffee with a girlfriend or your Mum and sleep. With any baby you need sleep, grab it when you can because the emotion you are experiencing at the moment and the extra work is even more tiring.

    And finally be kind to yourself, if you hear yourself criticizing yourself or being negative, remind yourself that you are doing your best and that is all you can expect yourself to do.

  27. Plenty of therapy, plenty of time for yourself, and you don't need half as much "stuff" as you think you do.

    Also, the more you laugh, the better you will feel. It isn't a tragedy, it's a bump in the road. Don't forget to have fun, and lots of it.

  28. Do all the therapy you can! Depending on your state and county there are programs that can help you. Other moms are the best source for information. My daughter has cerebral palsy but she has come a long way. Our first neurologist said she would probably never talk or walk but she has proven him wrong:) You do give up some of your normal life and that's ok. Do what you can to keep your marriage in tact but do everything you possibly can now for that little babe and it will pay off. You will at least be able to look back and know you did all that you possibly could.

  29. I think all the advice above are great and I just wanted to put in my 2 cents based on my assistant's experience (her baby was diagnosed as having ventriculomegaly in utero). The internet is there and it's so tempting to look up medical research after medical research in an effort to gain some kind of comfort or optimism about what the future would be like. For your own sake, DON'T. It will only bring you more grief, especially the medical journals that can sound so terribly unfeeling. Surround yourself with people who are there to support, love and enjoy your baby, have time for yourself, and face each new day with a smile. :)

  30. There is already some great advice here! I just want to offer a specific therapy suggestion to you. We started working with the Masgutova method ( with our son and have seen some remarkable improvements in his physical abilities. My only regret is that we didn't know about it earlier, so that we could have started doing this with him when he was much younger. Hope that this might be helpful to you as well!
    ~ Keri


Thanks for sharing!

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