Finding out my son was autistic didn’t come as a surprise but rather as a relief, yet realizing he has a mental illness as well, wasn’t such a relief. It made me feel helpless, guilty, and posioned my mind with so many “what if?” questions.
“What if I had rested more during my pregnancy?”
“What if it had been him born first?”
“What if I had less stress in my life while pregnant?”
“What if I had eaten healthier?”
“What if I believed in God more?”
“What if I was a better mother?”
And the list goes on, and deep down I know it is ridiculous because it doesn’t matter what I did or didn’t do none of it would matter – he was born the way he was born and he has so many strengths that are simply amazing.
However, that being said it has got to the point where some days are almost unbearable. We have had several issues with his meds not working as they should and the one psychiatrist kept changing his ADHD medication first which of course did nothing because that wasn’t the issue. Finally the mood stabilizers were changed but still nothing except major mood swings.
Lets get this straight though – unless you live with someone who is bipolar or has some other mood disorder you have no clue what I am talking about. These mood swings are not just simply a child having a tantrum or getting pissed off at a sibling – no these are extreme! They can be very rapid and happen frequently through out the day as children tend to present symptoms in a completely different way than adults, and can look something like this:
Happy one minute and playing nicely or watching TV / playing video – whatever, suddenly someone can walk into the same room, look at him funny or do nothing at all, when suddenly his mood explodes into anger which can last up to an hour with screaming, swearing, punching walls, the list goes on, or he can suddenly become over the top silly and giddy laughing over nothing for a while, or he can get sad and start crying for no reason….. and so it continues like this throughout the day. This cycling can happen many times in one given day.
For me it is emotionally draining.
Then there are the voices, the not really remembering the rages, and the sureness that others have said things about him or planning to harm him. Oh and of course I wouldn’t be really telling you the whole story if I left out the attempts to kill himself, the self harm…. We at times get rapid talking – I am talking fast, fast, fast! So fast you can’t keep up. there is also the times when he is constantly taking things apart and rebuilding them (like a computer) or thinking he knows everything there is to know or that he can read minds.
Finally a month ago I said enough is enough and demanded a referral to CAMH (Center for addiction and mental health). I was tired off trying to get him asleep at 3am or his rages upon waking which result in me or his siblings being sworn at, yelled at, bossed around. The waitlist is typically 6-8 months. He had his first assessment last week. His wait was 3 weeks.
Our appointment lasted almost 4.5hrs. The psychiatrist is the Head of psychiatry and specializes in co-morbid diagnosis (more than one disability / mental disorder etc..) Him and his collegue spoke to both myself and Joshua individually and together, and read through several reports. They asked questions nobody else had over the past 10 years, and actually listened and didn’t judge. After a draining afternoon they shared that they thought he has many strengths but also some disturbing symptoms. They want to dig farther into the past and gather reports that have been done, they plan to talk to his teachers and they will not change his medication until they know exactly what is going on!
FINALLY SOMEONE IS LISTENING! FINALLY SOMEONE IS LOOKING AT ALL THE SYMPTONS AND NOT BLAMING AND FOCUSING ON JUST ONE ISSUE, such as the ADHD, Aspergers, and OCD behaviours.
Now I feel some type of relief that a Dr really wants to help him and is willing to dig farther.
Over the next few weeks, the psychiatrist will be contacting other psychiatrist / psychologists who have seen my son in the past, as well as his teachers.
Never be afraid to push for second opinions or demand your child be seen by a specialist. Sometimes we not only have to be our children’s biggest advocate but the biggest bitch of all can come in handy too!
Children who live with some form of mental illness everyday may look just as typical as any other child, but never be fooled. Some days for them can be a living hell, not just for them but for their family and friends as well who constantly feel as thought they are walking around on eggshells never knowing when one may crack.
There is so much stigma when it comes to mental illness, but please don’t walk down that side of the path. Instead become informed and involved. We as a society need to break the stigma and be more accepting of these wonderfully talented children.
Until next time,
Momof8crazymonkeys.
Wow, you truly are an amazing mom. I am in the midst of figuring out my daughter’s mental health issues, which are nowhere near as severe as what you descirbe. I fear for her future because her issues prevent her from attending her grade 9 classes for weeks at a time. I feel like it drains me of every bit of love and patience I have!
Kudos on you for making sure your son gets the attention and help he needs, and for recognizing his positive qualities as well.
Good luck!
Hi Nancy. I am just curious – does the school your daughter is in provide anything for her such as a laptop? This may be a great help in her communicating with teachers and such even though she is young, it is amazing how much these children know about computers! There are also many other types of typing tools that they could offer. Given that she has a diagnosis she is also entitled to an IEP. If they haven’t offered one yet then you need to request an IPRC meeting with the school board so that you can state your case and request that she be deemed exceptional – communication (this is what most children with autism are deemed as). It sounds as though you are a great advocate for your daughter so she is very lucky! Keep pushing for her rights because no one else will. You may want to check on line and see if there are any suppost groups in your neighbourhood. Other parents who have children with the same or similiar diagnosis may be able to help you out more with the school stuff. Good luck, and keep me updated:)
Chantel
My daughter – 6 was recently diagnosed with Selective Mutism and so often I’ve seen people (adults mostly) look at her when she doesn’t speak with them when they say ‘Hi’ etc like she’s being rude – especially from those adults that don’t know her or her diagnosis. Even with the diagnosis, I’m finding it difficult in the school system to navigate how I can push for help as they’ve never had a child with SM in their school. She’s learns just like everyone in her class although assessing her is proving to be a challenge with not being able to speak in front of the class and with difficulty to her teacher. Good luck with your son!
That is the hardest part Kath – the fact that others cannot see mental illness. My son quite often appears very typical to the outside world and many can’t imagine what he is capable of. Never feel hopeless – you are a great mom. Keep fighting now matter how hard you have to punch the walls:)
Thanks Sara – my son was also diagnosed with ADHD when he was 7 however, there is a big question mark there now as to whether or not he really does have ADHD because quite often a mood disorder can present itself very much like ADHD as they share many similiar symptoms. As well, in some children the ADHD medications can actually bring on more manic phases. Have you asked for a second opinion on your son? With massive mood swings and irritability it might be worth it:) Good luck and yes I will keep everyone posted:)
I have a profoundly gifted 10 year old who also has ADHD and an anxiety disorder. I sometimes wonder whether he’s bipolar as well because of his massive mood swings and his irritable nature. I worry about him constantly. We are dealing with it day to day and it’s often really hard and stressful, so I think I know how you feel. I hope that it works out at CAMH and I am very happy for you that you are finally feeling heard. Looking forward to reading further posts on your experience there.
Chantal, as a parent of a child with severe internalizing disorders (also co-morbid)…I HEAR YOU LOUD AND STRONG. I was just crying about it today and feeling sorry for me/her because it is “an invisible disease”. My girl is highly intelligent and just appears “normal” to everyone. Except she doesn’t have the same capabilities as other kids her age. The thing is, to look at her or even to talk to her or know her superficially, you’d never know. So people tend to expect her to behave “normally”. When she can’t…well that’s when the stigma kicks in. It kills me. I feel your pain, and I’m happy you’ve found some respite. I’ve been “fighting” the system here for so long that sometimes I feel completely hopeless.
the relief must have just been immense! it sounds like you’re “not out of the woods” yet but there is someone who can guide you through. you’re an amazing parent…never forget that.