Wednesday, April 28, 2010

How I made peace with having a kid who has special needs



Ken, a thoughtful (and funny) writer over at Blogzilly who's dad to Bennett, wrote a comment yesterday that really moved me. It was in response to my flip post on what Max would say if he had more words. Ken wrote:

"I hope to be where you are someday. In my present state of mind I would be focusing on what my son can't say. Your post shows there is hope to be in a better place and instead have some fun with it and be in a better place."

This is something I've been meaning to talk about. Because here's the thing: I know I seem pretty well-adjusted. I am. I know I seem pretty upbeat. I am...now. If I had started this blog when Max was first born, or even a couple years later, this would be a very, very different blog. It would be a blog filled with worry, hand-wringing, and all sorts of dark thoughts. To some extent, it's taken the passage of time for me to get to this better place, but along the way I happened upon some things that helped:

• I talked about my worries and my grief. With friends, with other parents of kids with special needs, with people in support groups, with a therapist. Now we have blogs, but there's nothing like having a real conversation to get the trauma out.
• I found ways to savor Max. I've written before about how my fears for Max's future would sometimes overshadow the fact that I had a really cute, delicious baby. So I got into taking photos of him. Lots of photos. I'd order prints and meticulously put them in photo albums. I made photo murals and hung them around the house. I'd order photo calendars of Max for Dave and family. I had a photo gallery of Max in my office. The photos brought in the joy of having a child, the joy that can get so easily squashed by all the medical drama.
• I'd make myself remember that as sorry as I felt for Max, he wasn't feeling sorry for himself. He was perfectly content. He didn't know that he was having trouble picking up the toy car because his hands were tight from the cerebral palsy; he just knew to keep trying.
• I'd think about how much worse things could have been. This was a total shift in perspective, because for the longest time all I could think was, Why did this happen to us? Why am I the only one out of everyone we know to have a child who suffered such a catastrophe at birth? But when I'd consider far more awful things that could have happened, I'd suddenly feel a lot better about the present.
• I put together the best team of experts I could find. I researched doctors and talked my way into appointments, shamelessly throwing myself at the mercy of secretaries. I made sure Max had experienced Early Intervention therapists. If someone wasn't working out, I'd go to bat to find a replacement. I fought the insurance company to pay for more therapies. And we tried alternate stuff, too, like craniosacral therapy and hyperbaric oxygen treatment. I was determined to give Max every possible chance at succeeding in life. Taking action was helpful for me, too; I felt like I had some control over a situation that seemed wildly, and scarily, uncontrollable.
• I didn't beat myself up. Between all the therapeutic exercises experts gave us, I could have spent 24/7 working with Max. I did my best, and I refused to feel guilty about not being able to do every single thing. Putting all that pressure on myself would have only made me more stressed, and that wouldn't have done Max any good.
• I forced myself to quit paying attention to major milestones. No more looking at the developmental books, no more updates from BabyCenter. I was only torturing myself by comparing what Max should have been doing with the reality of his delays.
• I learned to celebrate small, everyday achievements.
• I also learned to hunt down the happiness. If I was bummed out, I'd get in touch with one of Max's therapists and talk about the good things he'd been doing. That always gave me a lift. A little wine never hurt, either.
• I finally got to acceptance. It came excruciatingly slowly because it kept head-butting with hope—my hope that Max would completely prove the doctors in the NICU wrong. As time went on, and it was clear Max had challenges, I readjusted my hopes. I was no longer looking for the miracle; I just really and truly hoped that Max would keep on improving. And he has. As our saint of a neurologist has always said, "Don't look at books, don't look at medical records, don't look at charts. Look at your child, and what he's doing."

And so, that's pretty much how I have gotten to this place. If you regularly read this blog, you know I still have the sad moments. I cry on occasion, including when I write posts like this that take me back to the early years. I still have a streak of denial; I have Photoshopped the drool out of photos. I have freakouts about Max's future. But I have come a long way, both in years and in my mind. I've learned. I've adapted. I've adjusted. I no longer see myself as a person who had a really horrible thing happen to her; I no longer see Max as a poor, unfortunate child.

I am a mom of a very wonderful kid who has some challenges, a kid whose smile heals me every single day.

If you have any words of advice to add, or you have a question you'd like to ask, please do.

38 comments:

  1. Hmmmm-- beautiful post as always. My word of advice is that most of us need to stay in the present or at least work hard toward staying in the present. I have been walking this path for fifteen years and what I've noticed the most is that acceptance and grief and joy and everything else come and they go, come and they go. I so appreciate your articulation of acceptance and how you got there, but I'd add that for some it's a long, much longer journey -- and that is all right, too.

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  2. Wow, thank you! I will be printing this out so I can read it again. I keep typing and erasing. I don't know what to say but this is a journey. Some days are actually ok, others are dark. I am learning to be ok more. I am seeing joy in this new identity as a mother of a child with special needs. Somedays I am actually happy with my life...really happy. I never thought I would get there. And my son...he has no idea life could be any other way and he seems to be having a grand time. I wish I could soak that in more!

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  3. Yes. Yes. Yes. And also Photoshopping drool? Best idea ever.

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  4. Sebastian is going to be two next week. I still have some of those moments from the early years you mention. But I have hope from all the blogging moms of kids like Max who are older now. I am in Egypt so I don't have the support network for talking so I am so thankful I have it from other moms online. It's also helpful for me to know how hard it was in the early years for others when I am feeling so alone, I know that we will get through it.

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  5. Yes Ellen! I always want to scream it from the rooftops that time will dull the pain. When I see other parents like us with special kids who are little, they often are in that struggle for acceptance. They want it but it's just not there yet. I don't even know when it knocked on my door, it slowly snuck up on me in the last year or two. But I sure feel better than I did the first 4 years!

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  6. Wow - incredible post - I feel as if I could have written it - you say so much of how I feel. Today is my T-man's 5th birthday and I am almost to where you are Ellen. My whole perspective has changed over these last few years and I am in such a better place now. Thank goodness! It was so difficult to imagine how I would feel or how things would be after we found out some of his diagnoses. I have come to realize that he is happy and that is what really matters. Our life with him is challenging sometimes, but always rewarding - just like any other child. I do still feel sad at times, but that goes away a lot faster now.
    Thank you for a lovely post as always. You are such an inspiration, as is Max.
    Kristen

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  7. I think that your neurologist said it all really - and I'd like to share that comment if I may?

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  8. Of course you can use our neuro's quote. Wise words from Elizabeth, as always. And I am sooooo glad this resonated with you guys. I can't even tell you how often I've wished I could literally reach through my computer screen and give a big hug to all of the new moms out there (or moms with newly-diagnosed kids).

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  9. Ellen, thank you so much for sharing this, it's so true. And I really, really appreciate that you included the bit about photoshopping drool, because it might seem so minor to parents of typical kids, but sometimes it's those little things that make all the difference.

    I always look for your posts first in my reader. It seems like a lot of bloggers have been shutting down their sites lately. I'm not a frequent commenter (too self-conscious), but I appreciate your words more than you can know. Well, you probably CAN and Do know, actually. :)

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  10. Yes - I sure hope I'm in a different, better place in a few years or so. I think everything will come and go, but even in just the last year, we've come a long way. Thank goodness for other people who "get it"

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  11. First? Thanks for the nod. Though when I re-read my comment, I realize that last sentence was brought to you by the Department of Redundancy Department. Oh how I wish I could edit my comments after I have left them.

    But anyway...good post today, and I understand a bit better now. I guess a lot of what is bumping around in me is still fresh. It's only been a teeny bit over a year that Bennett even had his first seizure, and hasn't even been 6 months since the PDD/Autism was made 'official'.

    Anyway...thanks for clarifying that aspect of your journey. It gives people like me a chance to think...'Yeah, maybe, someday.' That's why I enjoy your blog so much.

    TO THE MAX!

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  12. I'm still very much in the receiving advice stage, rather than giving. But the one thing I was told from day one is that this is a long journey. Don't burn out the first year. I'm not sure exactly how to do that, but it has stuck with me during this first year post diagnosis.

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  13. Ellen,

    Having 'known' you from the beginning, I can say that yes, you have come along way. I was just going through some of the early emails! Your a wonderful mother, blogger and friend! I am proud of YOU!

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  14. -Beautiful!
    I struggle every day to accept my kids and self for what we are and not what I wanted. Everybody has something to overcome whether it is an obvious handicap or a learning disability/ disorder that is not so obvious. I find that since there is so much support and understanding of people with special needs that it is easier for me to accept it. It was harder when I thought it was all my fault that my kid was acting out!

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  15. What a nice post. I wrote one the other day about how I hate Cerebral palsy. I think at times I go through mouring and then right back to the grind. I watch a lot of friends with Autistic kids who are sure they will find the cure and drop MILLIONS of dollars to cure them...

    Cure.. what a word. Instead of Cure how about we ACCEPT and do our best

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  16. Touching and beautiful post and I am so thankful for your honesty, Ellen. Truly. I hope you do not mind that I linked to you through mine because I think this is such a great post of hope - and thoughts that we all have, whether we admit it or not. And it is ok!

    Thank you again.

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  17. I love this. You mind if I share?

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  18. What a wonderful post....my son is 3, and I'm taking step after step to get to where you are. You invited questions and I hope you won't mind this one...how do you go about or make adjustments for other kids reactions towards Max? (or for anyone that wants to answer your kiddo). My son just started some limited pre-school classes, one is special education based with multiple therapist one is not...(for the record, he's Autistic, and has Apraxia but the one that effects him the most is the sensory sensitivity disorder). He really wants to make friends and be friends, but he's so easily over whelmed with sensory issues and so behind verbally that it's really created a wall around him. If he does attempt to respond verbally, he's very quiet and slow and I've seen numerous kids, get impatient standing there waiting for him to respond and just leave. As he stands there lip quivering. And then on the other side of the spectrum, if kids start playing tag and screaming (happy screams, mind you), he will get completely overwhelmed and run to the corner, squat down and cover his hears and start stemming. Outside of blinking back my own tears, it's not the other kids fault, at this age, they are too young to understand, none of my son's delays and challenges are obvious to the naked eye (okay maybe some of you parents might pick up on them, but most won't). I can't shelter him and I don't want to be one of those bossy mom's either...there must be a fine balance, but I have yet to find it. And to be honest with summer social activies coming up, I am honestly dreading them...I am ashamed to admit that, but so far, outings or group/social things, family excluded have been such a struggle. Sorry this is so long.

    Jen

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  19. Thank you for this... I just sent it around to all of the family and friends who have helped us since Owen was born just eleven weeks and five days ago... Again, thank you.

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  20. I didn't get into how cathartic this blog has been for me, but it has been amazingly so. Partly because I can vent/share my feelings, and partly because I know I'm sometimes reassuring to moms who are in the thick of it. Rebecca, Jamie, Kara Melissa, Sari, and everyone else, and I'm glad it helped you. And Jamie, Owen is just adorable. And you are welcome to share this, Suealeen.

    Jen, I've also struggled with how to handle similar situations. First, here are two relevant posts I did you might want to check out:

    http://lovethatmax.blogspot.com/2010/02/developmentally-delayed-parents-and.html

    http://lovethatmax.blogspot.com/2010/01/mama-bird-ha-i-am-mama-pterodactyl.html

    I wonder a few things: Have you had a conference with the teachers/principal/speech therapist at school about this? It seems like they could be facilitating things for your little boy, and they could also offer suggestions that could be applied to summer activities. I mean, they could make it so that they set him up with one or two other kids on the playground so that he's not overwhelmed—maybe he has a cool toy or something that would draw kids in. (A little different but, when Max was 2 and he had a walker with wheels, he was the hit of our neighborhood.) The teacher could also have a classroom discussion where kids talk about what scares them, and it would be a chance to for the teacher or son to say loud noises scare him.

    Max also has sensory issues about new situations/noise. When he was really young, we just had to not do the big noisy group activities and arrange for one on one playdates. Or we just hung out with him a lot, with my mom and my then-single sister. Sometimes, I had to contain my own eagerness to get Max to do typical-kid things because it wasn't best for him. Do you know what I mean? It's great that he has family to hang with. Maybe that's enough for him at this age.

    Anyone have other ideas for Jen?

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  21. I agree, my daughter at that age was overwhelmed too especially by crowds on playgrounds. Try asking the staff to set up one-one first then slowly increase the group size. Why not try a short script? Like "hi my name is __ what's yours?" Mine is ___. Let's do a puzzle." etc. Hope this helps! Ayda

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  22. There is a wonderful website called The Common's Cafe: http://thecommonscafe.com/Home.html
    and an amazing little book that spawned the site. The book is called "The Badge ~ God's words to a wounded child" and is written by my dear friend Nan Mac who is the mother of a 24 yr. old handicapped child. Their story is amazing and truly inspiring. I count Nan and her son Dan as "Heroes of the Heart". I hope this helps in some small way...

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  23. Hi, I have a three year old severely disabled child (does not eat by mouth, walk, sit up, speak, etc.). I also have a 4 1/2 year old and a 1 1/2 year old.

    Regarding your autistic son having a difficult time with kids, perhaps the preschool environment isn't the right thing, right now. Liam had the opportunity to attend preschool, but he wouldn't have gotten much out of it. Thus we are having home based services.

    Your son might do much better in a really small play group with perhaps another child with some challenges and some "normal" siblings. I found a friend with a disabled child through my birth to three therapists. Ask everyone you know who is involved with special needs kids if there are any parents who have similar children or if they know any parents you might hit it off with...

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    Replies
    1. FYI Disabled, handicapped, special needs kids and autistic ARE antisocial words. Normal decent people do NOT use words like that. Who talks like that?! Shame on you- you should know better! And to both of you, get with the times please.

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  24. What an amazing post. I think that every parent of a child with needs should read it. It should be mandatory reading material before you leave a NICU, or when you get an unwelcome diagnosis. You are so inspiring. I feel the same way about my daughter, but could never voice it as eloquently as you did.

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  25. As a yound adult with Cerebral Palsy, and knowing how long it took me to get to this point with myself (actually, I'm still not convinced I'm fully there), thanks for sharing you're perspective of how you've gotten there. It's something I've always wanted to ask my parents, but never have.

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  26. Hi. I came over from Ken's blog and I am so glad he shared. I am currently trying really hard to make peace. I am trying to live in the moment and stop thinking so much about the future. It is hard, though. It is a whole mind shift and your post today has been really helpful. Thanks.

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  27. I think you are amazing. My family has... health issues. while I was pregnant with my daughter I was so afraid she would be born with something wrong with her, and worse that I would hate her for it. I was so afraid of that possibility that I almost put her up for adoption. I dont know really what to say other than I am in total awe of you. I really hope someday I am as awesome and well adjusted as you.

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  28. Wow, what an amazing mother you are to your two children. I cry almost everytime I read your blogs and am thankful that my children are for the most part healthy and can't imagine what you and so many of your readers go through on a daily basis. I think you ALL are such strong people and don't know what I'd do in your shoes. I almost think of you now sometimes when I get frustrated at home with my children and how your life must be even 1000x more difficult at times. Your an ispiration and I love reading your blogs, even if they make me cry alot :o)

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  29. My former less than two pound preemie who will be 27! in 23 days taught me that our children are just children. They are perfect, just like other children. They don't need to be fixed, just loved and supported and guided like all other children - and keep fighting until you get whatever help it is they and you need.

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  30. Thank you thank you thank you. As a mom early on in this "developmental delay" process (and having a particularly pity-party like day after a rough PT session), this is exactly what I needed to hear today. I remembered happening across your blog months ago, and just found it again hoping for some inspiration, and just a few posts down, found this. Thank you. I NEED to believe that this dark place will be lighter someday, no matter what the future holds for my sweet girl.

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  31. Hi Ellen, just wanted to ask was it healing to have another child? Im feeling that my heart will never be truly healed because I didnt get to experience "typical" even in tiny things like crying typically.

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  32. Marie Clare, that is a really good question. For me, it wasn't so much that having a second child healed me. It was that she helped me to not obsess and worry so much about Max, because I had less time to do so. My little girl balanced my brain out. Also, it was thrilling to experience a typical birth and newborn phase. I think it somehow gave me newfound confidence as a mother. But what ultimately healed my heart was Max. I eventually stopped looking to the past and grieving about what had happened. I stopped trying to look into the future and see what he'd "be" like. I learned to be grateful for his slow yet steady progress, and to appreciate the child he is, not the child he could have been.

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  33. Hi Ellen,

    Loved reading your blog about Max. My wife pointed it out to me because Max and our son Victor look so much alike. We also feel very much the same as you do about him and has taken as as long to find out. Here is his blog. I'd love to add one more item to your list: I've learned to count up and celebrate the things Victor can do instead of counting down and mourning the things he cannot do.

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  34. A beautiful post...and encouragement for you today.

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  35. This is just a beautiful, beautiful post. I wish I'd had it to read six years ago when my Leo was born. But at least I have it to read now. And I couldn't agree more with every word!

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  36. Hi,
    My name is Heidi... I just randomly came across your blog when I searched for songs for kids with special needs... the songs of love is perfect and I'm going to suggest it to my mom!

    My younger brother is severely disabled and I've always wondered how my mom managed to deal with it all. Reading your blog brought me to tears, because I think I just got a glimpse of the journey my mom has been through all these years, but never expressed in words to us siblings.

    Though you don't me, I will look forward to reading your blog from now on... It helps to see there are other families out there like mine!

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  37. GREAT example of 1st person "making peace - moving toward Positive Acceptance" work - just backlinked it to "The Stages of Grief Following Diagnosis" on my attentionally focused WordPress blog.

    Madelyn Griffith-Haynie, CMC, SCAC, MCC
    - ADD Coaching Field co-founder -
    (ADDandSoMuchMore and ADDerWorld - dot com!)
    "It takes a village to transform a world!"

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Thanks for sharing!