*long, raw, real post*
Since I posted the link "10 Things Parents of 'Normal' Kids Should Know", by Jami Ingledue (on my FB page) Ive been thinking that i want to share a bit about real life in our family.
What Im writing is in direct relation to the article. For those that dont know, we are parenting a young child with ADHD, ODD (oppositional defiant disorder), anxiety, impulsivity and sensory issues. She also has a lot of trouble with math (possible discalculia). Its quite the combination.
1. THE PROBLEM IS NOT THAT WE OR OUR CHILDREN JUST ARENT TRYING HARD ENOUGH
I cant even start to tell you how hard we are trying and feeling like we fail more times than we succeed. Our daughter does so good at school and yes, she melts down at home. This can mean anything from shutting down and going to her room to full out fits which include hitting, scratching, throwing objects, yelling, not eating.
2. WE'VE TRIED EVERYTHING
I can not begin to list the things we have tried. And I dont mean we try once and give up. We try a method for weeks, sometimes months, to see if its going to work. 99% of the time it doesnt.
Yes, our child "should" be doing a lot of things, like getting herself dressed in the morning and in the evening for bed. I mean, she is nearly 10 now...however, even this task can be too great for her to handle. Dont even talk about teeth brushing or hair combing (thankfully she likes her hair cut short) or bathing. Yes, we've tried everything. And dont tell me that "something" will work for her, we just havent found it yet. No, there isnt "something" that will work.
3. WE'VE AGONIZED OVER THE DECISION TO MEDICATE
Yes. Yes. Yes. We decided to medicate. After being told by her grade 1 teacher that she isnt cut out for school (in any language), we had to do something. A month later, the teacher was impressed with how much better she was. We see a specialist every 6 months to review her meds. With her being on max amount of meds, she tests on the "normal" line. Too bad max dose only lasts 4 hours. Most of the day she is under medicated. She also needs melatonin to sleep at night. A lot. She can not settle on her own. So yes, I lay with my almost 10yr old EVERY night for about 20 min so she can calm her body down. If im not there, she is too distracted by anything (& her room is basically empty except for necessities). Medication is not right for everyone, but it is for our family.
4. NATURAL CONSEQUENCES DO NOT WORK LIKE THEY DO FOR "NORMAL" KIDS
She will not eat typically in public (except rice or McD's). She will not complete her homework if she is getting teased at school for not doing it. She will not learn to listen and eat the next night if she goes to bed hungry because she had a melt down and missed supper the night before.
5. A TOP-DOWN, AUTHORITATIVE APPROACH DOES NOT WORK FOR THESE KIDS
The more we try to tell her what to do "cause we are the parents and you must listen and obey" does not work. A meltdown will happen in the most amazing way. She will assert her ODD in a way you can not even imagine. We must parent in a way that will get her on board with what she needs to do (including simply getting dressed in the morning or eating during the day). We must watch our words and our tone of voice. The use of the word "no" is not recommended. Sometimes redirection works, sometimes it doesnt. We must pick our battles.
6. THERE ARE HOURS UPON HOURS OF UNSEEN COACHING GOING ON BEHIND THE SCENES THAT YOU DONT SEE
Last week we had to talk her out of an anxiety attack because of big winds (caused by a typhoon that was on its way end...that anxiety attack is a whole other story). This is not the first time we've had these discussions. Last week it took about 5 min to calm her, the first time, about 30 min. There has been years of talks to get her to calm down. We talk after EVERY anxiety attack and meltdown on how things could be handled better the next time. Sometimes she remembers, sometimes we are right back where we started from.
7. IF WE ARE LATE OR MISS AN EVENT, IT'S NOT BECAUSE WE ARE UNORGANIZED OR WE DONT RESPECT YOU
This has happened. More than once. Often it's because it has taken too long to calm her. Too long for her to come out of her ODD or anxious state. I wish we could attend everything we are invited to, but we just cant. We must always think about how she will react. Will we be home in time for bed? Will her medicine run out of her system before we get home, if so, how will she be (answer: we never know how she will be)? What is her mood like? We can not predict her mood ahead of time, so we may say yes at the time you ask, but when the day comes, things couldve blown up by then and going out just isnt an option (or having people over).
8. IT'S NEVER-ENDING
Never. It takes a very special person to watch her (yes, even now when she's almost 10). Sending her to camp is not an easy decision. She did well this past summer, but who knows how she will be next year.
Freedom of a normal nearly 10yr old. Nope. Cant do it. I wish we could.
9. WE FEEL ALONE
The writer of the article says "It's hard to talk to other parents honestly about our kids and their achievements. Your kid made the honor roll? Great. Mine didnt kill herself. Yay! Not exactly good for conversation."
This sums it up. Im so happy for those who can brag about your kids achievements. It really is good. But know that a part of me dies every time I read a status like that knowing my child will likely never read at her grade level, never mind above her grade level. My child will likely never be able to tell time using a hand clock or do math. She wont be on a sports team. She wont have sleepovers.
And about not killing herself - you may think this is sarcastic. But you know what, when she has a meltdown, this is so true. Oh, and lets add in that she didnt kill any of us. Because, yes, when she is a full out fit, she says and does things she doesnt mean. She doesnt know what she is saying. So, no, this isnt sarcastic. It is reality.
10. OUR KIDS ARE OFTEN EXCLUDED AND HAVE TROUBLE MAKING AND KEEPING FRIENDS
Thankfully, she has friends. But she is not at the maturity level most of her peers are at, so I dont know how this will play out as she gets older. Right now its ok. And her twin makes sure she is included. But, kids tend to gravitate more towards her twin than her.
So, if we are late, if we are on edge, if we are unsure, if we dont jump up and down for your child's accomplishments, it really isnt because of you. Honest. It has everything to do with our journey, our family dynamics and sometimes our feelings that our child can never measure up. And we know you arent posting/sharing/saying things to upset us (i know this never even crossed your mind). And we really want to be happy for all of you and your families. But sometimes its hard. Especially on a meltdown day.
Have compassion and try to understand - but I know that is so hard if you arent living in it. Please dont share some cliche phrase or bible verse or some "my _______ is like that and it can be hard when i watch them" type of story in hopes it will give us encouragement. Chances are it wont.
DO listen. DO care. DO let us rant. DO let us cry on your shoulder when we've had a tough moment (which seems never-ending) or day or week or month. DO call/email/text us. DO ask us how things are (& be prepared for us (ok, me) to breakdown if its been one of those times) with the intention of really wanting to know. We arent looking for you to solve things, but talking it out is sometimes all we need.
Just be there for us. 100%.
No comments:
Post a Comment