My year 2021 started in much cold feelings. My 12-year-old son did not want to wake up anymore. He was in the bed for more than one week refusing to go to school or talk to anyone but me. What happened and why?
He is neurodivergent child, a child who has Sensory Integration Problem (SI) or Sensory Processing Disorder (SPD). Since he was a little boy, he had something different in him which I could not understand or describe. He did not sleep and had stomach pain and cholic. He was shouting in the shape of macaroni before and after breast-feeding. He woke up something like 14 times a night. What a terror for all. When he grew older I felt he is really special. I never asked much help or if I did I was belittled by health care staff or people around me. I felt like an idiot when tried to raise these issues in front of professionals.
SI -problem came in front of me when boy was 2,5 years and already I knew he is totally opposite from other kids. Sounds, smells, food, clothes, bathing, sleeping, cutting nails, combing hair, being alone, tolerating mistakes. Seemed that everything in him needed extra care and effort. On the other hand I was raising a boy with much happiness, smiles, positivity, joy of simple things, sharp mind and clever thinking and somehow spiritual vibes talking about souls, after life and life before, making very sharp comments about adults life being only very young at age. Understanding big complex issues very young making him look older than he is. But same time struggling with basic things like not letting me comb the hair or brush his teeth, eating always same food or wanting to hear same stories over and over again. Much stubborn and easily going off the track. Emotions went over and he bang his head against the floor if there was something he did not like. I was sometimes too afraid to ask help. Response was always related to something what I do. That I am doing something wrong.
How to raise neurodivergent child in the world of much information and food for senses?
I think neurodivergent kids and adults are here to teach us. My son has woke me up so many times with his clever realizations and logic. When he was six he asked why we cut the trees to get paper for advertisements which are full of plastic crap we don´t need? Same age he learned which companies are supranational and should be avoided. For my 90 year old and more grandmom he explained about abortion policy in North-Korea. But same time he could not tie his shoes (still difficult), peel his potatoes or fruits (except bananas), never had visited barber shop in his life and writing with pen was terror for him. Now you see and understand how his brain works.
What is my strategy as a mom? Well, I never put much effort on the idea how things should be. He is my first child so it took time to understand that he is special for real. Also denial from closest ones kept me quiet for too long. I decided at some point to raise him as I wish. Like there is no rules for growing kids. Even he was doing many things quite opposite I did not mind. I was much with him, he needed me around very long time. I prioritized him and his needs (even so much my own wellbeing went off-balance).
When child with neurodivergent diagnosis comes to this world you can imagine that every sense is extra. Sometimes it can be extra less so not feeling at all. I did everything with my son with my own mother instincts because we did not get much help. He did not easily go into something but when he did, he easily fell in love with that something. Like with swimming. First refusing to go to dip lake but after long process he finally did – and then it was beach life every night many hours. Neurodivergent kids – like any kid – need much praising and support. Much repetition and loving comments. Because when they feel supported they are so lovable and loving that there is no limits. They easily get off mood and lose their nerves and think they are bad or stupid and dramatically throw things away and get angry. Also failing in schoolwork can make him want to do suicide. So much patience and support.
What kind of emotions have I had as his mother?
Raising a kid is a huge priviledge. But this child took much energy and effort from me. I think not many of my friends realize how much I have to do with him. Everything had to be prepared well before. Since he was two years old I started to verbalize his feelings and people in healthcare and in kindergarten were amazed how verbally clever he is explaining emotions, understanding what happened when someone is crying or hurt. My biggest feeling as his mother has been sadness. I am sad that I was not taken seriously when he was a baby. When he was a toddler. When he was in first grades at school. When I have been talking to people about his issues. I have only few people who seem to feel what I go through and those are mothers who have similar kids. I have felt sorrow I have not been able to discuss “normal” things with other parents, I have no such experiences because everything is upside down in my son´s world.
My biggest feeling as his mother has been sadness. I am sad that I was not taken seriously when he was a baby. When he was a toddler. When he was in first grades at school. When I have been talking to people about his issues. I have only few people who seem to feel what I go through and those are mothers who have similar kids.
Second biggest emotion has been joy and happiness. How I am happy that this boy was sent to me of all the mothers in the world. This boy has woken up my own spiritual progress. He believed even before me that there are souls inside us and everything living has a soul. When other kids play football and do normal boy things my son was walking with me in forest and talking about forest spirits and guarding the nature. He even planned WWF 2.0. When he is older, he can run it.
Also I have felt shame. When someone tells me this age kid should do this and that and I cannot really reply anything. I have felt shame and I don´t like myself like this. Also shame about have I failed somehow as a mother. When boy has long repetition periods and he is stubborn and repeats some sentence like 200 times and I go crazy and shout him something terrible I think I am not normal anymore. I am like a monster mother. I can see how evil and bad I can be. How I can hurt his self-esteem and vulnerability by blaming him and acting like a child myself.
My long term emotion or feeling with him is tiredness. I was first tired about staying up 3 years when he could not sleep. Then I was tired of being his support all the time. He wanted always me as his security and safe. Nobody else he shouts. Nobody else he did not hit (he quit hitting in the age of 6 with the help of therapy). This animal rage he had sometimes – it was opposed to me. I have kept him in bear hug hundreds of time. I have wrestled with him on the floor hours because of his temper and anxiety attacks. I have taken him to martial arts trainings. I have taken him to aerial acrobatics to get body balance and control. Family aerial circus. I have arranged him help in first grade in special class where he was directed to normal class because of no problems in academic skills, just sensitivity. I have traveled with him. To Paris (where sun shines), to Portugal, to Sweden, to Hungary Budapest, to UK, To Estonia and Germany. Many trips in Finland. I have offered him everything I could.
Now that I am single mom and responsible for him alone I feel quite often overwhelmed. How did I do all this? Where all the energy? I am working mom and have my own health issues.
What happened this spring after being week in the bed then?
My son had just decided to give up. I was hopeless. I felt I cannot do anything. After 5,5 years in school system he had had enough of it. All these years he had been bullied badly. In our old home city he had three different schools during three years, last one was changed because of heavy bullying and nobody´s response for it. Soo shamelessly bullied. Physical violence. Mental abuse and manipulation, bullying and nasty comments. We moved to Helsinki and I thought now it is over. But it was not. After six months started problems. )I think the school system and how it does not reply on bullying deserves another writing.) Now the reason was outlook. Fatty! Faggot! You should die or kill yourself! Your clothes are ugly and you are ugly! You are poor and you don´t have design clothes. After my son melt his nerves at the school yard and lifted one boy up on the wall we started to get some help. But we. Because boy did something. Bulliers never got responsible for their actions. Never I met their parents even I asked for that.
Boy´s school started to go down. He had no motivation and he said everything goes so quickly at the classroom. He is just watching out from the window. He did not want to go to school. It has been bad place and bad experience for him. He has no good feelings about it. Heavy background. How would you feel walking in your office and someone says you should kill youself? Every day. Year after year.
In January we got results from boy´s psychological tests. It was said he suffers from trauma-based depression because of bullying and anxiety problem. Also SI-problem and maybe ADD traits. What can we do then? Doctor wanted to prescribe anxiety pills. Only after blood tests. But because of SI, my son refused of all tests so we did not get medical help. Even talking with psychologist did not change his mind. He got big anxiety attacks, usually at home before school and after. My own work went off tracks and being single mom and entrepreneur was really hard. I did not get much income or help anywhere. I slept something like 4 times naps per day. So tired I was last spring. I did not eat much because I did not afford to buy myself proper food and I did not feel like eating. Because of COVID gym was closed so my body weight went up and motivation to move down, everything was on pause. Just me and my son in our own bubble. My son shouting he wants to die and me wondering how long will I survive like this?
Just me and my son in our own bubble. My son shouting he wants to die and me wondering how long will I survive like this?
What kept me optimistic and going on then?
Here comes the yoga part. Because I believe this boy is my teacher. I am his mother because nobody else would not be capable of this. I have been optimistic and happy, like my mental state usually is. Some weeks are pure darkness in my memory, but even if I was there in my darkness I kept thinking this is just a phase and everything is well. I did meditation and kept myself calm. Not always so well, but that is life. Sometimes I could not meditate, I just laid down on yoga mat and cried my eyes out. Asking for help. And usually it helped. Struggling with money is familiar for me because of my past. That´s why it was the thing that stressed me less but I felt again failed sometimes. But only sometimes, most of the time I counted my blessings like I have food today and roof today and electricity today so all is well.
I keep balancing myself concentrating on this moment. I have great trust in Universe, God, Nature and my Guruji or higher dimensions. So I knew I am taken care of even sometimes I felt losing hope.
After this you might want to ask what happened to my son after spring?
Well he got to upper grade (two subjects almost missed) and in new school. After that he changed a lot. He is going to school and coming from school without anxiety attacks. He is not the sharpest kid on the class or getting high grades but I don´t mind. He has tough past with 6 years of being bullied and traumas to heal. And I am here supporting him as a teenager. He has no school motivation but he is quite ok. He enjoys some subjects and that is enough for now.
He is a teenager with voice getting down and pimples on the face, sometimes overwhelming emotions and so much annoyed with mother. But this is a good sign! I almost lost him this year so I enjoy every bad word he shouts me. Come on! Let it come! Show your despise on me! Hate me! I am here for it!
And how we did survive without help?
Well I am a yogini. I have nerves of a cow (Indian cow of course). I am human too. I have my mantras, meditations and breathings – manaspujas and asanas. My body did crack this year badly but this is other story to tell. Also I had my teacher with me all time and support from new friendships and love.
Kriya yogis are said to be much powerful. I don´t know if I am like that but maybe believeing I am had helped a lot.
By the way I called psychiatric unit on February that my credit and batteries are now empty, please help me. Guess if we have had any help since that? Well you guessed righ – nope. Just meetings and meetings. And two tickets to zoo last week. That is the support for neurodivergent teenager´s single mom family in this wellbeing country.
But I am not sad or mad. Just frustrated many times. I know many parents have no batteries left. I tried to seek help.
Finally some closing to this subject, which is:
How to support neurodivergent family and kids if you are a relative, friend or social worker/healthcare staff:
- Don´t assume you know. Because you don´t.
- Ask can you help somehow. If you cannot help don´t ask.
- Don´t tell how strong they are. It is killing me every time someone does. I am not strong. I am human and weak sometimes. Saying you are strong might cause burnouts and belittles the problem
- Don´t belittle. If going to the dentist needs all day preparation it might need all day. Just because your kid goes there alone and happy may not be your excellent parenthood but your kids temper issue and personality is different.
- Sometimes ask how are you doing. And listen. Sending virtual hugs and love and light may annoy sometimes more than you can imagine. Send love and light for real.
- Tell parent how well she/he is doing. Probably he/she hears everyday how bad she/he is.
- Don´t bemoan on social media about the kids behavior you have seen on bus/market/street if you don´t know who they are. Probably someone who is a parent of neurodivergent child will see your moaning and feels much little and failed because their kid does that too. If you see this situation you can smile to parent or ask can you help.
- If the parent tells about problems take it seriously. Say something like you must be tired or you must feel devastated instead of increasing drama. Try to calm down the parent.
- Can you share some wellbeing with the family/kid/parent? Cook food for them, take for a walk, offer your help in smallest things like making a cup of coffee. Yes please, it would be a nice thing.
- Last but not least, do not leave them alone I repeat, do not leave them alone with their problems. So many friends I have lost, with zero energy to keep contact myself. I am sorry but shame, tiredness, stress and anxiety might cause the feeling that I am not capable of being a friend for anyone anymore.
Please feel free to write you comments, likes or not like here below. You can ask for help too, or tell your story. I would be happy about it. Good luck if you are a mother of a neurodivergent child or children. And enjoy the ride with big heart ❤️🙏🏻
