May 25, 2011

Encouragement

This post has been on my mind recently, but I wasn’t really sure how to write it down, or what to say. So I’m just going to give it my best shot.

I know a number of women in this business who have children with special needs. I can count up, very quickly, five of them. I’m one of them. This needs to be pointed out, because I want everyone dealing with this particular struggle to know that you can have something for you too. That your dreams aren’t over. That you can still write.

Writing got me through a lot of the bumps in the road with both of my boys. My oldest has a pretty severe speech delay that, at five years old, is finally starting to sort itself out. My three year old son is in therapy for Autism, and he’s only just starting to speak.

The day I got The Call, I was enrolling my oldest into a pre-school that would help him with his speech, and I was doing paperwork to get my middle son started on Autism therapy.

That stuff is hard. Coming to the point where you’re admitting there are problems, problems you can’t just fix. Problems that might not go away. In the midst of that, I was so thankful for the support of my husband, my family, and for books that allowed me to go to another place for a while, either as a reader or a writer.

It’s important to know, if you’re facing this particular issue, or something else, that you aren’t alone in it. And that you can still write.

With my middle son, who I call Danger Baby online, I came to this realization during a talk with my mother: No matter what his ‘diagnosis’ is today, he’s the same child he was yesterday. The same child he’s always been. A diagnosis only helps your child get treatment. It doesn’t change who they are.

And the diagnosis doesn’t have to upend your life, it doesn’t get to stop you, or defeat you. (My plug for early intervention, because it does work!)

I know a lot of moms of special needs kids, with all different kind of problems, on all different ends of the spectrum. They are the strongest women out there. Because it can make you strong. It can make you see life differently. See people differently.

I think my new perception on people has only enhanced my writing. It’s only helped me understand love that much more.

Still, I know it’s painful some times. I know that worry, the one where you wonder how your child will grow up, will they have friends? How far will they progress? Those aren’t fun worries.

That’s the other thing I’ve learned from my Danger Baby. One day at a time. Today, I’m fine with where he’s at. I’m proud of the progress he’s made. I love him more than anything. That’s the important stuff.

And that mindset has carried over into other things in my life in a positive way. One day at a time. Not worrying about tomorrow, because tomorrow will worry for itself.

At RWA last year, Nora Roberts said when she was going through her divorce, she could have paid for therapy. But she chose to write, and use it as therapy, and get paid for it.

I love that. And I find writing can be therapy. A place for me to let my emotions bleed out. A chance to take a brain break from some of the tough stuff.

The bottom line of this post: You aren’t alone. And you can do it.


Comments

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  1. A really lovely post. Worrying about your kids is the most humbling thing, and it really is important to know that you aren’t alone.

  2. Add me to that list. Bionicle Boy (who was once Thomas the Tank Engine all-the-time boy) is on the very shallow end of the autism spectrum pool, but he’s in there. Because I used to work in special ed and was an educational diagnostician, I probably know way more than will ever make me happy about his every symptom and all the things that could go wrong…but I also know enough to appreciate how very far he’s come. Yes, there are still tantrums, there are still other issues, I fear he’s always going to be a bully magnet and I’m still not quite sure how he’ll ever live independently (some of that is just the 11-year-old boy thing, probably)…but he has friends. More than one. He’s succeeding in school. His speech, once so dysfluent, is mostly clear and articulate now. With my daughter, who’s six, I don’t know that I always appreciate these little milestones quite as much, simply because they’re not such hard-fought battles. With her, I don’t feel amazed every time a peer comes knocking at the door to play with her. But there’s an enjoyment and relief in not having to feel that way, too. I think what having a special needs child can do is make you constantly aware of how special all children are, how unique and amazing. And how adaptable parents can be, learning to deal with those challenges.

  3. Del,

    Thanks for sharing that. I think it does bring that unique awe and appreciation to so many things. For me, watching The Girl develop on schedule has been a miracle, and at the same time, every word, every milestone is like a party with Drama and Danger.

    I’m so glad your son has friends. That’s such an amazing feeling. I always think that if Danger can have friends life will be all right.

  4. Julia, it’s true. It puts things in perspective. One of the Sassies has a child who’s ill and that puts the Autism stuff into perspective for me. Hugely.

  5. My eldest child has dyspraxia/dyslexia plus a mild heart defect, after arriving 6 weeks early. Weeks in hospital, intensive care, children’s wards, paediatricians, cardiologists, occupational therapists, physiotherapists, I’ve seen them all. I thought I knew what fear was before she was born. I didn’t. Do I see things differently because of it? I think so. The day she was born felt like the end of the world, but then the next day came and life carried on.

    Can’t fix yesterday, can’t fix tomorrow. So squeeze every last drop out of today 🙂

  6. Maisey, that was the best blog I’ve read in a long time. Truly inspirational, and you’re right – one day at a time is the only way to do it. Bless your little ones, and take care.

  7. This is a beautifully written post, and very brave to open up and discuss this, in a public forum and in real life. So many people see children’s special needs as something that shouldn’t be discussed, but to me openess and honesty helps both the mother and the child in dealing with their ‘issues’.
    My husbands youngest brother is disabled with cerebral palsy and is also quite severly autistic, it’s tough and 6 years ago when I was introduced to the family I found it hard to know how to act and interact with him, but I have learned that with the right amount of love, honesty, talking and boundaries he is able to lead as normal life as his disability allows.
    And, bravo to you for carrying on going for your dreams!
    All the best
    Xx

  8. Jane, that’s such a wonderful outlook. I love that Thank you for sharing your story.

    Christina, thank you so much. Danger appreciates all the blessings he can get. I’m truly so proud of him. Today he walked up to my dad and said ‘Papa’ Progress!!

    RLA, thank you for the lovely comment, and for sharing about your brother in law. It changes you to know someone with a disability. To really get to know THEM rather than simply see that they’re different. It teaches you to see people in general in a new way.

  9. Maisey, you terrible woman. Tea does not taste so good when one is unable to stop sniffling!

    What a wonderfully honest post. There’s a power in keeping things simple and you’ve just proven that.

    Special Needs. Disability. Long Term Illness. Terminal Condition. Incurable Condition. And perhaps the worst of all, Deadly Disease. Yeah, I’ve pretty much heard them all used in reference to my wonderful boy over the past 7 years. There were times when I thought that the actual physical pain of worrying would kill me, but I’m not dead yet. And I remind myself of this fact every day by never worrying about things that I can’t change. Ok, I lie, but only a little. Of course I worry, I’m a mother of four boys, worry is somewhat necesscary and totally obligatory! I didn’t lie about the change part though, much to my utter heartache, I can’t change my son’s medical history. Have I become a stronger person because of Ben’s diagnosis? I’d like to think I have always been strong, having fought my own battles back in BC (Before Children). But yes, I’ve become stronger because I’ve become more knowledgable. My husband jokes that since that fateful day back in September 2003 that I’ve acquired a whole new life. It’s true. I’ve not studied any of the following in college and it’s very unofficial but I’ve learned how to use physiotherapy, I’ve learned how to complete home IV’s, I’ve learned how to monitor the fat contents of all foods known to mankind, I’ve learned how vitamins really work, I’ve learned to distinguish between a genuine cough and a mere tickle of the throat just by listening to Ben breath. I can put together nebulisers full of foul smelling antibiotics while driving my car and fixing my hair. Alright, so that’s not true but you get my meaning. I can do these things because I have to, because I have the knowledge now and while I would love more than anything in the world to have never needed any of this knowledge, I’m going to do my best with all of it. If I’ve chosen to accept all of the above, chosen to believe that by doing my best will benefit my child, then yes, I’m a hell of a lot stronger now.

    I have dreams of my own and while they mostly consist of wanting and hoping to see my ALL of my children grow up, to know that Ben will at least be given every possible chance of securing his very own HEA (because let me tell you, he SO deserves to), I want something for me too. Writing. It’s my thing, it’s what helps me when I’ve reached such a low that I’m flat on my face. I want to succeed more than ever now, I want to lead by example, I want my children to know that anything is possible if you work hard enough. For parents out there with Special Needs Children, we don’t give up because life has given us a challenge; we rise to it. And by God, do we celebrate every single detail of success, be it a clear chest for an entire month or a single word from a child so precious. We’re truly blessed because we know a love that pushes us to be better people for the special people in our lives.

    Thank you Maisey, for this post, for encouraging us, for allowing me to ramble and make me wonder if I actually made any point in that ramble!!

    Aideen.

  10. What a lovely post. My son is mildly dyslexic, but as an articulate mother I found this so frustrating. It was, at one point, in danger of derailing our relationship as mother and son. Then one day I came to a decision – I stopped home being a place where I tried to ram education and spelling down his throat. I told school that the majority of the education part would have to be down to them. I concentrated on helping him read his Playstation magazine (swear it was better than school readers for getting him interested in words), engendering his love of history through battle re-enactments and castle visits and above all concentrated on developing our loving relationship (I was a single parent at the time). He still struggles with reading and writing, but is not severe enough to get help. So proud that this child who I thought would leave school with no qualifications, battled to obtain 10GCSEs, 3 A levels and an AS and after a false start on a Physics degree, has just completed a Business and Marketing degree. Best of all we are friends. My main message is – your child is still your child whatever their imperfections, love them because and in spite of those and enjoy life with them. Mx

  11. My son has a seizure disorder. He’s in his early thirties now and still lives with us out of necessity. He never reached his full potential. But early on we knew he wouldn’t. We’ve accepted it for so long that…well, sometimes we forget what a struggle his life is.

    This week, his younger cousin got engaged. He was quiet, sullen. In the car on the way to Walmart he quietly told me that he would have loved to have had a wife, kids. But he knew he couldn’t. Medicine makes him slow. He can’t work. Couldn’t be trusted alone with a child, if only for the fear of a seizure.

    He can’t drink alcohol with his cousins and brother. No bachelor parties for him. He goes to bed early. He can’t have a job…or drive.

    But what he does have are integrity and courage. He tells me all the time that he knows neither his brother nor his sister could have handled this struggle, so he’s glad God gave it to him.

    I know the rest of his road will be hard. But I also know he’s up to the challenge.

    And, yes, mom’s of kids with disabilities can write. We can search out the time to express ourselves or to just take a few minutes or hours to do what we love. That’s part of the way WE stay sane.

    susan meier

  12. Maisey

    Thank you for such an amazing post and for sharing something so personal – like Aideen it caused some sniffles here as well!! .

    Your words: “Coming to the point where you’re admitting there are problems, problems you can’t just fix. Problems that might not go away” “No matter what his ‘diagnosis’ is today, he’s the same child he was yesterday. The same child he’s always been. A diagnosis only helps your child get treatment. It doesn’t change who they are.”

    Those words really spoke to me – it’s where I’m at and it is hard.

    But our children are who they are and we love them for that uniqueness, for being them.

    And yes I will keep writing and I did take encouragement from your post and I am going to try to take it one day at a time (not something I am very good at!!)

    Thanks Maisey

    Nina x

  13. Aideen, you’re about the strongest lady I’ve ever known. You’re a prim example of how being a mother brings out the best in you, even as life hands you the worst. I can’t say enough words for how you, and Ben, and Andrew, and all of you, inspire me.

  14. Morton, I think that’s a great story. You found ways to help your son get around his dyslexia. My brother is dyslexic, along with some other learning issues, but he loves computers and he’s brilliant with them. He’ll read to learn now, and that’s helped him hugely! It’s all about finding their interests, I think.

  15. Aww…Susan, bless him. What a sweetheart. How heartbreaking for him to have those moments where he realizes that there is a limitation. But I truly believe that every person has purpose, and that we’ve all been given what we need to fulfill it. Good for him for having such courage and integrity. The world is short on people with those qualities, and that’s the honest truth!

  16. Nina, I think those are the hardest times. That point of acknowledgement and decision making. The part where you have to give a name to what you hoped you were quirks, or ‘being behind’. But it gets better from there. That’s why I truly value one day at a time. Last night my Danger (he’s 3 1/2) walked up to my dad and said ‘papa’. That’s a huge accomplishment, one that deserves being savored. That’s why it’s so important to say ‘today he made progress’ and call it a good day. Or, ‘today he was happy’ and you call that good too. My favorite is ‘today was hard, but it’s always harder before they have an increase in their development’ (something I’ve observed that’s actually been true for him)

    My oldest son also finished his special preschool yesterday and will be going to mainstream Kindergarten in the Fall. We had a pizza party. Celerate every victory. 🙂

    And that place you’re at, with the uncertainty and anxiety, it gets better from there. It really does.

    Sending prayers for you and your family.

  17. My son is a sweetheart. When he was younger, we would tell him, You’re not different. You’re not Special. You are Michael and this is Michael’s life. His teachers told us he was their most well adjusted student. Because he always knew who he was. Didn’t push or fight or even get angry with less than stellar grades. He accepted a lot and still found ways to enjoy his life.

    It’s not often that he gets sad or upset over what he doesn’t have. That in and of itself is a blessing.

    Sometimes the best life lesson to learn to to play the hand you are dealt.

    susan meier

  18. PS forgot to mention I love your celebration idea. Every good thing, every step, deserves to be celebrated.

    susan

  19. Hi again,

    I hope it’s ok to hijack your blog here Maisey, but I couldn’t in all honesty just sit back and read all of these heartwarming stories without commenting further.

    It’s my opinion that women in general, are fantastic creatures!! Yes indeed. But the wonderful women who have come here today and shared their heartaches and triumphs are beyond amazing. We are told often enough that we’re not alone in our battles, that there are others out there going through similar, sometimes worse, situations. This post has reinforced that point greatly for me today. I personally feel better off already, just knowing that all of these ‘challenging’ kids (adult kids included!) have been blessed with such incredible mothers. It’s half the battle, right? And if I can just say to Susan, your son has not only broken my heart a little, but he has blown me away with his amazing acceptance of life as he knows it. We could all learn from him.

    Nina, hang on in there. There is light at the end of the tunnel and it’s ok to doubt that I’m telling the truth. But honestly, there really is and one day you’ll be dazzled by it again.

    Thanks, again, Maisey. It’s been so therapeutic I feel like you ought to have charged us!!

  20. What a lovely post Maisey. I never had children (although I do have a step son and grandson), but it really struck a chord with me – and many others I’m sure.

    Caroline. p.s enjoyed your recent posts – but bad Blogger has been playing up and I’ve not been able to post a response.

  21. I love you all. Now I’m teary. Really. Such wonderful women!

  22. Bit teary here too. Thank you Aideen and everyone else for sharing. Sometime that is such a hard thing to do in itself. I know I am blessed with my lovely children but sometimes it doesn’t seem fair for them and some days are tough for us all. But other days are ‘pizza party’ days and I’m going to make sure there are a lot more of those! .
    And Maisey now not only has your blog given me some wonderful writing guidance, some fantastic hours of reading its also offered me some therapy!
    Nina x

  23. Oh, Nina I know the it’s not fairs well. I would sometimes resent that my other friends babies were pointing and saying ‘fish’ when my 2 1/2 year old still couldn’t. But we do have to hang on to the good days.

    Thanks for the lovely compliments. Therapy for me as well!

  24. I have to say that this was just what I needed to hear this week. As a mom who has been fighting to get the right treatment for a child, it is extremely discouraging attempting to get doctors, insurance companies, and the community to realize they are people not just stats.
    Reading your battles and triumphs helped me see that if I live in the moment and focus on the person no one can take away his right to be treated like a human not just a number.
    In our house we celebrate the good days and rejoice in the “normal” days. Thanks for bringing encouragement to a discouraged mom. 🙂

  25. Carla, I’m sorry you’re having such a struggle getting treatment. We have so many resources there’s no reason for someone to go without! He’s unique, and wonderful, and deserves to be treated as more than a stat, you’re absolutely right.

    Rejoice every chance you can! It keeps the sanity. 🙂

  26. Maisey, this has to be the most honest and inspiring blog post I’ve ever read. You are amazing.
    x

  27. Thank you, Sarah! I aspire to do my best every day. My Danger Baby, and my other two of course, only push me harder to do that. In the very best way!

  28. Thank you so much for this wonderful blog post, which made me quite teary. I just starting writing romantic fiction after two years of being really sick. My condition is ongoing and I am unable to work in any usual way but I am learning to manage it to a degree though my life has completely changed. As you say, one day at a time. I find I can write when I am good and think about the plot when I am not so good. It is a blessing to find your blog as it has helped me so much to think about how to go about writing this genre. Hope your children have wonderful lives full of joy and laughter – and you too!!

  29. Annie, thank you so much for your comment. You made me teary too. Sometimes one day at a time is all we can do, but the beauty of it is, we can see the blessing in each day…or be thankful that a day is so short, and that in the morning, there’s something new.

    My prayers are with you. For your health and your writing.

  30. Thank you! 🙂

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