I’ve often wanted to write a book about my life, not a biography but a book about the difficult years of my life. I want to share it in the hopes of just one person reading it and being able to use it to move forward or at least just try to, but to be honest, I simply can’t! I wish I could but it still hurts too much and at this time in my life I need to focus on myself and my son and not the pain that lies in the past. If I start writing it now, it wouldn’t turn out to be at any use, it would be too soppy and I want it to be constructive and useful for others to read.
I often say that what’s in the past doesn’t matter but that’s not all true because the past is playing a big part in how we develop, how we grow, how we see life etc but I do think we should all try to live in the present and that means RIGHT NOW!
Maybe one day I’m capable of facing that dark time in my life and write it so others can read it and feel inspired.
This blog post today is dedicated to ALL the parents to children with special needs! Let’s just call them ‘special kids’. Throughout the blog post, I’m going to write ‘he’ instead of he/she because it just makes it easier.
I know firsthand how difficult it can be, how alone you might feel and how weak you feel at times.
We’re in the same boat!
I’m a single mom to a special boy without any diagnosis and I don’t think I’ll ever get one but to be honest, the diagnosis wouldn’t change a whole lot for me. No matter what, I’ll always fight for my son and to see if I in any way can help him to become better. Not a better boy but a better version of him. I want him to live the best life possible.
Are you a parent of a child who has special needs?
First off, I want to say…. BREATHE!
It’s NOT the end of the world.
Was it your dream?
No, of course not!
But we need to deal with the cards we’re given. They change all the time but it’s up to you how you play them and by that I don’t mean or think that we control our lives completely but we sure can try to change our state of mind. Don’t think that I’m still not struggling and I still don’t feel defeated from time to time because I DO! But I’ve become better at handling my own worries and struggles, but most importantly I’ve become better in telling others when I have a bad day or if I need help. Before I kept everything to myself and that’s not healthy. It’s very important and actually crucial that you surround yourself with people who will be by your side when needed! I’ve lost a lot of friends in the last couple of years because my life is dedicated to my son and I don’t blame the ‘ex friends’ because if they can’t handle me when I’m sad or worried, they don’t deserve to be in my life. It sounds selfish but you can’t be everything for everyone. You need to pick your battles.
If you’re like me, having a child with no diagnosis, just know one thing, your love is ALL he needs! (along with the basic needs obviously such as food, drinks, care etc)
I’ve searched all kinds of illnesses on the internet, at one point it was so bad that I couldn’t sleep at all and I was walking around like a complete zombie and my mood, well you can guess it was BAD! Sure, all that searching around made me wiser on different diagnoses, but did it help my child? NO!
I’m not saying you can’t search different things yourself and especially if you’re having trouble with doctors and hospitals as I have or did because finally I learned to say enough is enough and wrote a complaint about the way they treated both my son and me but that’s a different story! But try to tell yourself that it’s okay to try to let go of the control, just a little. I know it’s difficult. I’m still struggling with that.
I have days where I just let go and see where it takes me but I also have a lot of days where my inner control freak takes over and I’m desperately looking on the internet. It can create quite some worries because my son and his symptoms fit a lot of different illnesses but when it all comes down to it, he can’t be placed in that certain box. So it makes me even more frustrated but I finally think I’ve learned to relax a little and be more constructive without being obsessed. Surely we all want our children to be well and if they aren’t, we’ll do whatever we can to help them.
My son’s medical journal is HUGE and he’s been tested for all kinds of different illnesses. I’m still looking the internet but mostly because I want to find a doctor who can help or something. So far, mission has failed. So what can I do?
Be the best mommy to my son. Take one day at a time.
Many have told me that they’re amazed in how well I’m dealing especially since I’m a single mom to a sick child and the fact that my son’s father isn’t helping at all, he’s not even supporting. Also the same people have asked me many times how I’ve done what I have and how I can still be standing.
To be honest, I haven’t done that much. But yes I’ve tried numerous of different alternative treatments for my son (this is a very expensive way of trying to heal your child so please listen to your heart in all of this because I’m sorry to say this but there are many frauds out there, just wanting your money and unfortunately parents with sick children are the easiest victims), been to psychologists, therapists and so on.
But two things I would recommend if you have the possibility is to try Marte Meo therapy with your child. Especially if you have a child with no language and you therefore find it difficult to ‘communicate’ or read your child. But also it’s brilliant for children with outward reaction. Marte Meo is where a therapist comes home to you and videotape you and your child together. They don’t film for that long, maybe between 5-15 minutes and it’s just footage of your everyday life. Then the next time you get together, you’ll watch the video filmed the last session. It’s NOT about your flaws or weaknesses! The therapist points out where the communication is very good and the relationship. Of course you can go through what you might want to change. But this therapy is amazing because you get to see your child and yourself on video and believe me, it can be quite the eye opener.
Just to give you an example:
We started with filming eating situations because my son wouldn’t sit by the dining table at all and he just screamed and kicked and wanted to get away. After filming one of those nightmare situations I saw it all from a different angle. Just seeing myself looking so tense and stressed and my son being that frustrated helped me a lot. 3 months later and my son sat nicely by the dining table and I could feed him with no trouble.
As parents to these unique children, we can be quite stressed and there might be something we’re missing while being with our children. So Marte Meo is brilliant!
And the second thing I really think you should look into is to change your child’s diet. I don’t want to preach but changing foods can make huge changes. I’ve done it myself with my son (and me) but we haven’t done it for that long yet but already his stomach has changed A LOT! Before he had constipation all the time. His skin has improved and also he’s more curious and more alive. What I’ve done is to cut away gluten, grains, dairies and soy! I’m getting help from Micheal Hilton to make the best diet. But let’s not call it a diet but a new lifestyle. I’m not saying it can save your child but please take the time and look into it.
But back to people asking me often how on earth I keep standing and how I keep fighting. What do I do to deal with my child when we’re not talking treatment or searching for those.
Of course I’ve fought everything I could and I’ve never compromised with whatever professional or doctor has told me. I’ve always listened to my gut and heart. But how have I dealt with my child?
Every child needs a whole lot of love! A special child is no different.
Every child needs smiles and laughter! A special child is no different.
Every child needs kisses and hugs! A special child is no different.
Every child needs encouragement! A Special child is no different.
I could go on but okay the special child might need a little more encouragement than a ‘normal child’.
Oh and have LOADS of patience! Whatever you want to achieve, just remember it can take a long time but DO NOT give up!
Something that most special children might need little more than ‘normal children’ is closeness and extra attention from you to make sure that they’re okay.
Since my son can’t talk anymore, I really need to look at him a lot, read his eyes and body language.
According to several doctors my son shouldn’t been alive today, and they say that even though they have no clue on what’s wrong with him. Ignorant people!
Are you too looking for a diagnosis for your child?
PLEASE remember that even if you ever get one, don’t let it ruin your inner fighter!
Miracles are out there!
I know the fight can be tough and sometimes I just want to crawl under the bed and stay there but that doesn’t make the reality disappear and it won’t help your child. Some people tell me that I need to stop being naïve and face the truth (some = my ex = the father of my child!) But what’s the truth? The only answer I know to that one is that I love my child endlessly and no one could ever make me give up! It’s perfectly okay to keep dreaming! But don’t let it stop you from loving your child in the middle of the struggle. Your child needs you!
Always tell your little one how much you love him, how precious he is.
Every night before bed time, I tell my son that he’s superman and the best champ I’ve ever met. I always tell him that I love him, several times a day! Of course this is something you should do no matter if you’re a parent of a ‘normal’ or special child, you need to let them know that you love them!
I always tell my son that I love him just as he is and how much he has blessed my life!
Doctors told me that they don’t think my son understands but I know he does! He smiles when I compliment him and he laughs when I say silly things. Believe me, these kids understands more than you think! If you’re child isn’t brain injured, he will understand. He might not be able to express himself with language but he hears you. Keep talking! Always!
To me it’s crucial that my son doesn’t think that I’m fighting this hard because I want to change him, because that’s far from the truth! I just want to make sure that he gets the best life possible and that he’s not in any pain!
Do I want my son to be ‘normal’?
I would love to hear him say mom again! And I would love for him not having to go through life in struggle or not having a good life in general. But my son smiles and laughs a lot so he’s happy and not sad about his life.
So why do we, parents, keep fighting? Is it just because we want them to fit in? Is society too rough on those children? How far are you willing to go?
No! I’m not just trying to get my boy to fit it, I’m all for individuality but I do want him to be well and be able to play and have fun. Right now he can’t play, he doesn’t use his hands. About society, well maybe it depends on where we live in the world. I can honestly say that I’ve seen some very ugly cases on how bad society treats people with difficulties and what poor offers there is.
I’m willing to go all the way!
If you want some ‘pointers’ on how to improve your special child or at least just the relationship between you, I’ll give you some ‘advises’. These are just from some of the things I’ve learned and experienced with my child. I’m not in any way saying it will help your child and again, please don’t think I’m feeling better than you. We are all equals! I just want to share because maybe one person out there finds it useful.
1: Look at your child. Don’t just stare but show your child that you’re smiling and you’re there to help.
2: Massages are very good for us all but it can be a great thing for special children, not only because it improves their acknowledgement of their own body but it also creates a little break for the both of you and it’s gives security and calmness. Don’t hesitate on spoiling your special child.
My son often always falls asleep when I give him a scalp massage, he enjoys it a lot and becomes very relaxing. My son has these stereotype movements with his hands but when he gets massages, he relaxes completely.
Also a stomach massage is brilliant if your child is constipated. Search the internet or ask a therapist how it’s best done. Your child will love it. Maybe not from the start, but it’s all about creating new ‘habits’.
3: Compliment your child as much as possible. Acknowledge him! And don’t be afraid to exaggerate! Many special children react to this in a positive way. I’m NOT saying you should talk to him as if he’s a baby because if you’re child isn’t brain injured in any way, he’ll understand! And we don’t want to put them down in any way.
4: Hugs and kisses! Exaggerate! Why? Often special children find it difficult with that kind of closeness. Don’t force it but train every day. It’s important for us all to feel loved. And what better way of feeling loved than getting hugs and kisses? Again, don’t be silly about it and kiss your child all the way to the grocery store.
5: Mention what your child is doing. Such as: You’re smiling…. or if your child is angry/frustrated it’s perfectly okay to say: I can see that you’re frustrated and it’s okay. A child needs to be guided but it also needs to be understood, especially if having no language.
I could make more but try to think about it yourself and see what would fit into your family and what your child enjoys the most.
Feel free to contact me if you need to talk or ask.
Dear parents, please remember yourself in all of this! Don’t let the struggles overtake you. Believe me, I did for years but finally I think I’m on the way to remembering myself and what I need and want. Of course, my son will always be my main concern and he’s always first in line! No doubt! But to be the best parent possible you need to accept that you can’t change the world over one night. It’s perfectly okay to relax sometimes.
I hope you enjoyed this blog post and that you might be able to use it for something. I’m not trying to sound like I know better but I know about having a special child and how lonely we can feel at times especially if the system fails over and over again.
YOU are the best parent to your child and please don’t ever give up or let anyone tell you that your child can never be well. We might never get our children to be 100% functioning compared to ‘normal children’ but we’re fighters. Remember it’s your child and you know best.
Keep smiling, keep believing but most importantly keep asking! Don’t compromise and don’t just let the doctors tell you what’s wrong without them giving you solid proof thereof.
Take care of your children!
Ps: I know ALL children are special and unique!