Having a child with ADHD, ASD & ODD

Another Baby?

In 2007, 2 weeks after my husband proposed, I started to feel quite ill. I had felt sick and just generally off for a couple of days, before a friend of mine persuaded me to buy a pregnancy test. I didn’t tell my husband, I just snuck out of bed, very early in the morning to do it. The two lines appeared very bold. I took the second one, just to be sure. Yup. I was pregnant. I just didn’t know how to feel, I was a bag of emotions. At first, I felt shock, then happy, then scared. All very typical feelings of getting pregnant. I remember climbing back into bed, test in hand and wakening him up to tell him. I was so worried about his reaction. We had only been together less than a year. His proposal was still a shock to everyone, never mind a baby. When I woke him up and told him, his reaction couldn’t have been better. He was so happy. We were so happy.

My pregnancy was a difficult one. I was ill for the whole thing. My morning sickness never actually came to anything, I just spent the whole day feeling like I could be sick. It also lasted my first two trimesters. Then there was the fact my blood type is A+ but my husbands is B-, meaning our baby had B- blood, making our blood type is incompatible. I never even knew this was a thing. It meant that both I, and our baby were not having the best time, and I was braced for the fact he may have been born a ‘blue baby’. I also had a 1inch tear in my stomach muscles, from my breast bone, to my pubic bone, from when I carried my twins. It was very painful after having them, but even more so during my pregnancy with my son. I had to wear a back/stomach brace all the time, except when laying down. I became overly sensitive to smells too. Mushroom omelettes used to be a favourite of mine, and one day, my husband was making one, and it literally smelt of shit. It was horrific. I had to open all the windows in the house, and mushrooms could never be cooked in the house again. There were other weird things, but that one stands out in my memory the most, because of how bad it was. I also didn’t like the taste/textures of things that I once did. For weeks, the only thing I wanted and could eat without feeling sick was a Twix. The whole 9 months of this pregnancy was horrible. So, as you can imagine, the day my husband and I picked our date for my elective section was an exciting one! This nightmare pregnancy was going to be over, and we would eventually get to meet our son.

Bouncing Baby Boy

The day our son was born, we were so excited. Everything was going well, everything went on schedule and to plan. Adam was born a healthy 9lbs 3oz, and wasn’t a blue baby! No transfusions were needed. He came out screaming, so we know he had healthy lungs. The only problem is, he didn’t stop screaming. The doctors checked him over, said he was fine. Fine? Really? He literally didn’t shut up. When I held him, he wriggled. He was so strong for a new born baby. He didn’t want to be held. He didn’t want to be put down. He didn’t want to be fed. He just cried. I cried. What was I doing wrong? The hospitals now put little security bracelets on your baby’s ankles. He kicked and screamed that much, he would get it off within minutes! The nurses laughed and found this amusing. As you can imagine, I did not. At all. There was something wrong with him, and no-one was taking it seriously. The first pictures  we have of Adam he has marks all over his face, this is from him flailing his arms during his screaming and scratching his face. Scratch mitts were futile, as he’d get them off too. So I ended up buying baby socks with better elastic to keep them on. Still no joy. I tried different milk formulas to see if that was the problem. Nope. Tried swaddling him. Oh no!! Bad idea. Hated being restricted. Hated being in a baby grow. Hated being held. Hated me? He just kept crying. All the time. Never sleeping for more than a 30 mins to an hour at a time. What was wrong?

My health visitor would visit and tell me that he was perfectly fine, and that he was picking up on my stress. Seriously. That is what I was told. I tried to explain to her so many times, that there was something not right. He wasn’t like my other 3 children. To which I was told that no two babies are the same. I honestly started to believe that I was the problem. I had doctors, nurses and health visitors telling me he was fine, and that I was the problem. I didn’t know what to do. When Adam was around 6 months old, I dropped the older ones off at nursery, my husband went to work, and I just sat alone with him. He just sat in his swing, crying. Again. I started crying. I couldn’t do this anymore. My son hated me, and I was making him miserable. I packed him a bag and called my health visitor. I told her she needed to come and get him. When she arrived, she sat me down and told me that I was suffering from postnatal depression and that she would get me help. I was referred to my GP, who put me back onto antidepressants. These didn’t help. Adam still hated me.

By the time Adam was a year old, he was only just starting to crawl. I put it down to him being a lazy baby. When he started to get moving, he would periodically bash his face, yes nose first, onto the floor. He wouldn’t cry when he did this. Like he felt no pain. He would do so hard as well. So, my husband and I would have to make sure there were cushions, and his play mat around for him to move around on, to soften the blows if he did try to do it. Then he discovered the radiator. He would run his face along the front of it, with force. Very strange! He would also sit and punch himself in the face and pull at his own hair. I took him to the doctor, who told me I was just to do my best to prevent him from doing it. Ummm, well. Thanks Doc! Real helpful.

Terrible Two’s?

When he was 2 he had limited speech and his motor skills were behind. This was not for lack of me trying to do things with him. He had lots of toys to stimulate his senses. Playmats, bouncers, swings, building blocks, paints, crayons, water drawing mat, teddies etc. I would try in vain to get him to play, but he wouldn’t want to. He would just want to be destructive and hurt himself. When we went for his 2-year assessment, I raised my concerns, AGAIN, and I was told that he was a ‘typical boy’. My GP actually shouted on Adam, got him to look him in the eye, and told me his responses were fine. Shit you not. That is exactly what happened. Oh yes, because if a child gives you eye contact, all must be well. I was also accused of putting too much pressure on him to do things, and to let him do them in his own time. Pressure to do what exactly? Play? What two-year-old is not playing? He didn’t want to play with ANYTHING, EVER! I became exasperated. I was so concerned about Adam, so was my husband, but the rest of the world saw nothing wrong.

The next few years were a huge struggle. Every single day was a fight to get through. He would cry/whine all day. I’m not even exaggerating here. It was all day. He wouldn’t sleep at nights. Adam would throw himself out of his bed, head first, constantly. He was still self-inflicting pain. He was shouting, screaming, destroying, hurting my other children, hurting me even! He loved nothing more than to dig his nails into my arm whilst gritting his teeth in my face. He was such an angry wee boy and I couldn’t help him. I felt completely overwhelmed and helpless.

Adam started public nursery when he was 3, but only part time. The rest of the time he was with a child minder so that I could work. Every single day I was getting letters home about Adam regarding his hitting, self-harm, refusal to play with others/join in, stealing. It was constant. Again, I went back to my GP, raised even MORE concerns. It was then we were referred for him to be checked further. A few months later we attended another clinic, who did some basic motor skills tests, and said that they would need to come out and observe him at home, and then at his nursery. They would also need the nursery to fill out a form, as well as myself, for comparison. This was a long process, but I was feeling hopeful that we were eventually getting the help we needed. Imagine my surprise, that after nearly 8 months, I receive a letter from this clinic telling me that they have found nothing wrong with my son. I also received a copy of the nursery’s reply. They had rated him as a happy child. A happy child, who plays well with other etc. Can you imagine my level of rage? I took this letter into the nursery, along with the pile of letters I’d received from them over the last year and asked for an explanation. I was told that the form for the clinic was filled in by the head teacher, and not them. What the actual….Why did I go through all of that? What was even the point?

Off to School

When Adam got to 5 and it was time for him to move onto School, I raised my concerns that he wasn’t ready for School. The nursery said he was, and he was going. Basically, that was that. His first month in Primary 1, was horrible. I got phone calls daily. I had to pick him up on numerous occasions because his teacher and the other children were not coping with his presence. It was such a stressful time. What was I supposed to do? Just when I thought all hope was lost, I got a phone call from a girl called Melanie. She was a support worker at the school, who had met Adam and felt she could help. I was invited in to talk with her and the head mistress, where it was raised with me that they felt he may have some learning difficulties! HALLELUJA!! I was so relieved that someone else saw what I saw. Melanie managed to get me another referral for the child clinic, and she even came with me to the appointment for support.

During this appointment, Adam had to run laps around the room to be able to focus long enough to answer the questions being given. His motor skills, language and emotional responses were measured. He rated low. Before any formal diagnosis could be given, we had to be sent off for a further referral to another clinic. That took months to come through, but I didn’t mind, because we’d struggled for 5 years, and all thanks to Melanie, we were actually getting somewhere. After about 3-4 appointments, he was formally diagnosed with ADHD & ODD. We were offered medication for him, but I refused. I didn’t want him to be on tablets, I just wanted help. With this diagnosis he was getting a little more understanding and support in class, although, still not enough if you ask me. Adam struggled daily. Every day getting him ready for school was horrible! He would cry on his way there. He would hate me for making him go. He was so angry and disruptive in the class, that he spent pretty much all of his day in the enhanced provision, where he did no work. He wasn’t learning anything. What was the point? I was phoned pretty much every day, and letters sent home about his behaviour. Adam was also being bullied for being different by some older kids in the school and had not a single friend. Not one. I’m bubbling as I type that, because it just breaks my heart. I know why the kids didn’t want to be around him. I get it. He can be such an angry wee boy, but by the same token, he’s my son and I hate the thought of him feeling alone. He spent his play times walking around the playground with the playground attendant. This also made him an even bigger target for the bullies. I spent so many hours in that school, having meetings, discussing/suggesting ways to make things better for Adam, and none of it worked.

Medication

I eventually gave in and agreed to put him on medication. At first, he was on a stimulant tablet that had to be taken 3 x a day. This medication takes time to build up in their system, so we didn’t start to see results until about a month in. initially, he seemed to be a bit calmer. Still just as angry, frustrated and whiney, but not as hyper. As the weeks went on, I was getting less phone calls and letters home, and he was actually starting to take part in class. Winning? No. He started to become very depressed, and would often talk, in detail, of how he wanted to kill himself. He was 6? He would sit and tell me about how he doesn’t want to be here anymore and how he hates being alive. My husband and I were besides ourselves hearing this. We would give him lots of cuddles and tell him how much we love him, but this didn’t help. Initially his doctor chose to up his dose, to the maximum legal amount for his age, but this just made the suicidal thoughts worse. I just took him straight off them. I’d sooner have an angry child, than no child.

Due to the suicidal thoughts, his doctor suggested a slow release tablet, a new one on the market, that has had good results in trials. This one he takes once a day.  We find he is much better on this medication. His learning is coming on leaps and bounds, and he is even at the top table for Maths! The fact it helps him with School is great. I am thankful for this, but, it doesn’t help with everything else. Medication for ADHD is not a cure. It merely gives them the help they need to string thoughts together, to help them concentrate. That is it. Adam still has suicidal thoughts, but not nearly as much. He still gets depressed, angry, whiney, destructive, compulsively lies, steals etc. I think some people are naïve enough to believe that medication is the answer. It isn’t. It’s merely a help.

Sensory Issues – ASD

As well as his ADHD, Adam has always had sensory issues. He’s never liked wearing clothes, certain materials, sounds, smells, foods, textures etc. I noticed at a young age, if taken him into a public toilet he would have a meltdown if someone used the hand dryer. He couldn’t cope with the hoover being on at home. If a sudden noise came on the TV, he was difficult to calm. He would take the physical heave with certain smells and obsess about others i.e. we still cannot go to a super market and not have him seek out the ginger to sniff, or the candle aisle. When he was about 8, I took him to the funfair with a friend of mine, who’s son has autism. Sarah had been telling me for a long time she felt Adam had Autism, but I would just say that it’s all due to his ADHD. Well, when at the funfair, Adam had realised he was now tall enough for the fun house. He was so excited to go on. I paid for his ticket and off he went. He hadn’t even got to the stairs, when the gentleman who I bought the ticket from started to talk into his microphone to entice more people over. Adam started shouting, putting his hands over his ears, and spinning around in a circle. He was so disoriented and scared. I threw the stuff I had in my hands at Sarah’s partner and tried to climb the railing to get to him, when a steward stood in my way and told me I couldn’t go on. I started shouting at him and the man in the booth, telling them he has ADHD and doesn’t understand what’s going on. All the while the man in the booth is still doing his ‘Roll up’ routine! I proceeded to shout at him “SHUT UP!!! YOU’RE UPSETTING MY SON”. He just looked at me, rather unamused. Adam was still spinning around, and I’m still being blocked by this steward. Eventually the man in the booth shut up, but not before giving me a going over for not making them aware of his issues. I was then able to gently coax Adam off and we swiftly headed home. He was badly shaken, and we have never gone back.

At his next appointment I raised this with his doctor, who said that they wanted to refer him for an ASD test. This was another long wait, and given my previous experiences, I wasn’t holding out hope. After only two appointments, he was diagnosed formally as having ASD as well as ADHD & ODD. They were also able to tell me that he has the emotional/mental age of a 5-year-old. This explains a lot. I was so relieved to have him formally diagnosed, but at the same time I’m so incredibly frustrated at the fight I’ve had to get him the help he needs. As a parent, all you want to do is make sure that your child is happy and healthy. For the last, nearly 10 years, I have fought so hard to try and make him happy and I’ve failed at every turn, because I don’t understand him.

What does it mean for a child to have ADHD, ODD & ASD?

 

Well, try and think of a child who has limited emotional understanding, with high logical intelligence, without the capacity for attention, who likes to argue about absolutely everything! That’s the black and white definition, and we still have all the grey areas. He is a very colourful child, who, when not being negative and aggressive, can be quite caring and loving. There are days when I can see him far enough, and quite literally must put him ‘out of sight, out of mind’, by sending him to his room, because he’s just upsetting absolutely everyone. Then there are times when my heart breaks for him, and I just want to make it all go away.

The older Adam is getting, the more he’s noticing the differences between him and his peers. For example, due to his sensory issues, he has been given ear defenders to wear in school for assemblies and things. As you can imagine, kids are very mean to him about this, so now he’s refusing to wear them, but is now struggling to cope. At lunch times, the mixture of smells in the dinner hall, cause him to feel sick and this makes him anxious because he’s not allowed to leave until he’s eaten. Words have been had about this, and I like to think more leniency will be taken in future. Adam tells me often he wishes he was like everyone else, because he hates being different, and he hates having no friends. This absolutely breaks my heart.

Stigma

My Dad has told me several times over the years “There’s nothing wrong with him. He just knows how to play a room!” and “He just needs a good smack”. Yup. This kind of attitude is still around. My Dad has complete contempt for Adam. He’s not nice to him at all. Has no empathy or understanding. Adam has said to me, more than once, “Why doesn’t Grandad like me?” or he’ll declare “I don’t want to see Grandad, he’s always horrible”. That saddens me. I’m raising this because it’s not just my Dad who has this attitude. There is still a lot of ignorance towards people who have ADHD & ASD.  It’s thought that ADHD & ASD are new. Made up to excuse bad behaviour. Yes, very good. I guess Cancer is new too? Never mind the fact that cancerous cells have been found in mummies. ADHD & ASD are not new, but rather our understanding is evolving and recognising that these are issues. How can it be, that in this day and age, we will have this complete and utter ignorance? I cannot comprehend it. Is this because I live with ASD & ADHD? Or is it because I’m empathetic? Or both? I honestly don’t know, but something needs to be done to break the stigma. People need to wake up and stop being so narrow minded, and be more understanding.

Why should Adam have to conform?

I watch Adam having to conform to ‘our ways’ every day, and I watch him struggle. There is no simple solution, cure, off switch to flip and just make it all go away. His literal and logical mind, makes it impossible for him to have a joke and a laugh with people. His sensory issues make being out in public hard, and overwhelming. Adam will fixate and obsess over things. He doesn’t just like a TV show, he LOVES it. His whole world becomes watching it, talking about it, and thinking about it. His most recent obsession is death. He is obsessed with worrying about me dying. Not his Dad I hasten to add, just me. A boy in his class lost him Mum about a year ago, and Adam is just so sure this will happen to me. If I so much as get a cold, he cannot cope and is convinced it’s more sinister. Having him think this way, doesn’t do much for my health anxiety I can tell you that. He’s also obsessed with us being poor. We’re not by the way, but he’s worried that we will be and we wont be able to afford food. Not sure where this has come from, but let me tell you, it leads to many embarrassing moments when out shopping. “Mum, are you sure we can afford this?”, “I don’t want us to go hungry! Please don’t say we will?”, and these are just random outbursts, that cause fellow shoppers to look at me with concern.

Yesterday we went shopping, and when I got to the checkout I realised I’d left my purse in the Cinema. I turned to my daughter to explain that I was going to have to phone the cinema, and Adam started to cry and shake. He was flapping his hands and saying “Does this mean we’re poor? We can’t buy this food? Mum I don’t like this feeling, it’s horrible in my stomach”, he then starts to hyperventilate, so I took his hands, started to gentle rub them and asked him to look at me. I got him to breath in for 3 and out for 6, whilst getting him to use the grounding technique I learned about last week. Slowly he started to calm down but was still quite shaken. Other shoppers were just staring, and I could feel myself getting quite angry with it, not that I voiced or showed that I was.

Every day Adam and I have a battle of wills to get him to conform to daily social etiquette, attend school, learn, be ‘normal’ etc. This causes him no end of stress and anxiety. I find he’s at his happiest when he’s running his energy off, playing sports, being active and learning in his own time. This leads me to think, should we really be pushing children like Adam to conform? Or should a little more understanding be shown, and a change in the way they learn be given? Adam will never grow up and work in an office. He would hate that. He will most definitely work outside and with his hands. He likes to be on the go. So why am I forcing my child to be in an environment that only makes him feel stupid and inferior? Every day he tells me how stupid he is, because he’s not like the other kids. This really pisses me off. Is the problem Adam, or the way our system works? I’d say the latter.

Adam is a very clever boy! He loves to watch medical and science videos on YouTube and can tell you all sorts of random facts. For instance, his favourite metal is Gallium because it melts at body temperatures! I hadn’t even heard of Gallium until he obsessed about it. He loves to watch minor surgery videos and told me that he wants to be a doctor to help people. I explained that he’d need to get A’s, and he got really upset and said, “Well that won’t be happening then will it? I’m too stupid”. He’s not stupid. With the right support in place, he has the capacity to learn. Just not in the classroom set up we have in place. He absolutely hates school, and I don’t blame him. I don’t have ASD & ADHD, but I know I struggled in the classroom environment. I still do. I absolutely hate the whole, read about it, write about it, now you know it, bull shit. I’m a hands-on learner. Don’t tell me about it, or make me read about it, SHOW me! Let me do it a few times, and voila, it’s stuck. So, I can only imagine what it’s like for Adam.

In an ideal world, what would I want for Adam?

 

First and foremost, I want understanding. I want the world to sit up and recognise that everyone is different. We were not all made to conform to societies standards. It is said that everyone falls onto the Autism spectrum, just people like Adam, rate higher, therefore are classed as having ASD. We’re all different, and our differences should be celebrated and worked with. Not squashed and made to conform. It just reminds me of the movie Divergent, where they pigeon hole everyone, and if you’re an anomaly whereby you cover several different ways of thinking, you’re killed. Ok, so I get we’re not that severe, but it’s true. We’re taught all these regimented subjects in school, some of which are not even bloody relevant. When was the last time you tried to find the fucking area of a triangle? Eh? Exactly!

A friendlier, more accepting world would be next. Instead of staring at someone, who is not coping in a social situation, carry on about your business. Or, if this person is distressed, with no-one around to support them, maybe step in and see if you can help? Don’t just stand and stare, with that judgemental look on your face, thinking you know, when you don’t. I guess this ties into understanding, because without it, how can people be more empathetic?

Adults raising better kids, to help them realise that all children are different, and that differences are OK! Children get their beliefs from their parent and their peers. So, if your child is a bullying little shit, you may want to assess what you’re teaching them, or the people you’re allowing them to hang around with. I hate when people say “Oh, but you can’t just blame the parents”. Yes, you can. You very much can. As a parent, our children are our responsibility. We are to talk to them, teach them, monitor what they’re exposed to, and do our best to raise them to be nice human beings. If your child is not. That is on you. Harsh? Yes. True? Most definitely. You cannot sit and blame social media, movies, computer games, their friends etc, when you are the one who permits them to use social media, watch the movies, play the games, and have those friends. That responsibly is on you. Now, my writing this does not suggest that my children are whiter than white. I have had to step in and deal with my older children when they have had their moments. All children have the capacity to be horrible, but the fact is, I have dealt with it and not put the blame on anything/anyone else. They were also very young, and I’m pleased to say, are not that way inclined anymore, and they no longer associate with the group of ‘friends’ they once did, because I put a stop them seeing each other. They now have a much nicer group of friends and are much happier.

I would also want Adam to have friends. It’s so upsetting to know that he doesn’t have any, and that he cannot just go out and play. He’s starting to realise that he’s missing out, as when in school his peers will talk of what they’ve done at the weekend, and he knows he’s left out. This really upsets me, and I’d give anything in the world to change it.

Given it’s not an ideal world, what can I do?

I can make the evenings and weekends as painless as possible. I don’t give him is medication on the weekends, and I just let him do his thing. If that is running about the house, going to the park, playing his PlayStation, playing out in the street, watching a movie, then so bit it! This is his time. I don’t feel the need to hold his concentration for any of this. I also find he’s so much happier at the weekends. A lot less stressed and anxious. He eats more too, which I think contributes to the better mood, and it certainly makes me feel better to know he’s eating for a change.

Recently he’s taken up skateboarding, as his brother and sisters have their skateboards/longboards, so he liked the idea. They often take him out on skates, and he’s loving it. I think this might be his thing. The next Tony Hawks? Probably not, but you never know.

Conclusion

Having a child with ADHD & ASD is hard. Very hard. It’s stressful and makes you wonder if it will ever get better. When will this shitty cycle of arguing and fighting with Adam to just do basic things stop? When will he realise I just want the best for him? That I’m doing right by him? WHEN? God only knows. I do look back on the journey so far and I realise how far we’ve come, and how much better he is today. So, whilst it’s still a struggle, and he can stress me out, it’s not even close to what I was dealing with when he was a baby. Now we have some level of understanding and reasoning, which does make our days more manageable.

I appreciate that my ideal world wishes won’t happen. Which is sad, but true. I can realistically hope that I’m doing my best by him, and that he will grow up to have a better understanding one day and know that everything I’ve done has been for him.

 

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