My list for you.

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Our family has been on this special needs/mental illness journey since my son was 6. I’ve got almost 9 years under my belt being a mom to a child with multiple diagnosis. As such I’m often asked an array of questions, which I will always take the time to answer. I am not new to this area of motherhood, but plenty of people are walking away from a life changing appointment everyday. So I’ve created a list of things I wish someone had given me. Blunt, honest and real but with love, kindness and understanding.

1.  They are them, no one else. Having a diagnosis does not change them from who they were yeterday. And they are not their diagnosis, their diagnosis is simply a part of who they are. They are still an individual who has their own personality, likes and dislikes. Sometimes an illness can play a big role in these, but they are still them, don’t mistake symptoms for the person.

2. Grieve. Yes grieve the  life, or happy go lucky child, or expectations you had dreamt of while holding your new baby. Not because they won’t still be successful and worthy people but because reality doesn’t always follow your visions, and we all have visions. It’s OK to be sad, angry and heartbroken that your child will face hardships, appointments, judgement, criticism and disappointments many others won’t. All we want is the best for our children, and when they don’t get the best, it crushes a mom’s hear. So yes grieve, it’s OK to cry and scream and wish for easy.

3. Let go. Now once you’ve gone through the grieving process, accept the reality. And that reality can be just as amazing as your dreams. Accept the diagnosis and your child, accept that though we may not like it, it is, and denial will help no one especially your child. Let go of the what ifs. You will always have days of wondering why, but try really hard to not get stuck there. Accept and learn to live this life. Because it really is beautiful!

4.  Educate. Educate yourself and your loved ones on the diagnosis. I mean really, delve in. Learn all you can in order to support and help your child to be as successful as possible. Read, a lot. The old saying ‘what you don’t know can’t hurt you’,  is the complete opposite when it comes to your child and their needs, what you don’t know CAN hurt them.

5. Commit. Yes seriously, being a special needs parent is isolating, time consuming and expensive. Commit to your child, and all they need. You might miss out on coffee dates and parties, oh well! You are the biggest part of your child’s life, you are often the only person who truly gets it. Yes you will put many miles on the car, you will be nurse, doctor, therapist and pharmacy all at once, all the time. You will need to do things at home more important than homework, you will have to make sure things run smoothly. Sometimes it’s hard and it sucks and you don’t sleep for months. Be patient. Because when you commit the time to the special needs of your child, one day sooner than you think you will see the successful outcomes of doing so. Those hard moments will become easier and you will catch your breath and be amazed at how far you and most importantly your child has come. We only have them for a little while.

6. It’s not about you.  Sorry but your child’s special needs are not about you. Don’t make them such. Of course they impact you, of course as a parent you struggle along, of course you hurt for the struggles your child will have. I can honestly say I have not once asked “why me?”,  because I am not the one living with it. Sure I’ve wished my child’s life was easier, that he had an easier go. My heart hurts often, but not for myself, for him. As exhausting and hard as it can be for us, imagine how exhausting and hard it is for them. We are the parents, not the one living everyday with battles only ones self can truly understand. Be empathetic and sympathetic to them.

7. Advocate. You will most definitely have to find your strength and your voice. And when you do (it may take some time), use it.  There’s more people who don’t understand than do. Your child can not advocate for themselves, you must become mama bear. In the school, in the doctors offices, in society. You’ll face unrelenting critism, discrimination and up hill battles, fight them. The more you do, maybe one day there will be fewer battles to fight. Take care with this role. Be kind but be firm. Educate but don’t belittle, ignorance truly is bliss. Be graceful while fighting the battles.  You are your child’s voice, use it well.

8. Be kind to yourself. Don’t expect to know everything, don’t expect to get it all right all the time. You can only do the best you can with what you know. And because the life of a special needs parent is ever learning, I promise you that doing your best is better than doing nothing. Forgive yourself for the mess ups, it’s OK! You are doing the best you can, and that IS enough. We are human after all.

9. Support. Reach out. Make sure first and foremost your child has the support they need, but also that yourself and other family members (especially siblings, as special needs can be confusing and frustrating for them), also have support. Be it friends, professionals, family or all of the above. Support is crucial.

10. Love. Nothing is bigger than a parents love for their child. Love them, as they are, not for what you want them to be. These kiddos teach us so much. The little moments become big moments and life is appreciated that much more. We are often reminded just how precious life and love is, we don’t take it for granted. We love deeply and we love the good, the bad and the ugly. Because we know that even the ugly is beautiful.

Wishing all starting the special needs journey, love, strength, patience and kindness. You are amazing!

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