Nov 12

Looking for joy! Sometimes us mommas of kids with NB special needs have to look pretty hard…

"Overwhelmed" by Ursula Vernon.

“Overwhelmed” by Ursula Vernon.

So y’all –

I have about a million blog posts in my head. I’ve been teaching a webinar on fetal alcohol spectrum disorder (FASD) based on the teachings of Diane Malbin, a FASD guru, my mentor, and my trainer, and there is so, so much I can share about the experience. It has been very humbling to present research-based approaches to parenting and helping a person with FASD and at the same time be parenting a person with FASD who is intensely complicated and putting all that I know/learned/am teaching to the test.

At the same time that I’m humbled and want to share what I have learned with you, since I believe it applies to all people with neuro-behavioral special needs, not just people with FASD, I am also feeling overwhelmed. Here’s why:

  • Each week I’m doing 2 webinars about FASD/other NB Special needs
  • Each day I parent my child with FASD
  • Each day I struggle with outside institutions (e.g. school) that don’t “get” my child, who read his behavior as a way to manipulate the system and get what he wants. In reality, his behavior is a clue to getting what he needs – which is not what they provide. So hard decisions are ahead for us.
  • Each day I work towards creating a non-profit to help families impacted by FASD: FAFASD
  • Each day I try to find more training opportunities so I can teach people what I know. You would think this would be easy, but people don’t know what they need to know automatically. It’s proven difficult to find training opportunities – even if I offer to do it for free. I’m available, by the way. Just email me: adrienne@fafasd.org
  • Each day I work on writing projects about NB special needs, which is what my publishing company publishes. Our next book is called The Resilient Parent, by Mantu Joshi, a dad to 2 children with special needs, a pastor, and a very wise guy.
  • And each day I log onto Facebook and read posts from parents of kids with NB disorders that occasionally make me laugh, but mostly make me worried and scared because of their desperation. I know we have a great community in the Easy to Love but Hard to Raise Facebook page, the FAFASD Facebook page, and the Mom’s View of ADHD Facebook page, but sometimes it gets to be too much for me. Adding to that the 300 of 500 “friends” I have on Facebook who are parents of kids with special needs and you can only imagine what happens when I log in with my morning coffee.

Overwhelm. I am overwhelmed.

So what’s the remedy to overwhelm? I can take a cue from my child, who routinely gets overwhelmed, which amps him up and makes him wild and uncontrollable. For me it’s the opposite: overwhelm makes me shut down.

I cannot afford to shut down.

When J. gets overwhelmed we remove him from the situation, we distract him, we make sure he has eaten good food, had enough sleep, and let him chill for a while. We try to think of things that will give him joy – but calm joy – not the joy that comes from jumping on a trampoline after eating 5 donuts until 10 p.m. (True story, don’t ask).

I need to do the same. Can’t really remove myself from the situation (although I have been spending less time on Facebook), but I can look for joy. Calm joy.

Now to figure out what that means!

Do you have any ideas?

Feb 22

Guest post: A Letter to the Future Teacher of My Exceptional Child

 

always_believe

Dear Teacher,

My son will be entering kindergarten this fall. Two years ago, I used to envision myself dropping him off for his first day of school with a tremendous sigh of relief. I would bring him to your classroom, where he would run off and be engaged in any number of different activities, and I would then head over to the Boo Hoo Breakfast, where all the other parents would lament over where the time had gone and I would pretend to be nostalgic but inside just feel relief. This was the fantasy I indulged in until a year ago. I figured I was like a mother giraffe that kicks its calf onto its legs until it staggers into survival. Now I know that when I leave him with you, there will be no great relief. Every day that I send him into the tribe is a day I worry about how he is doing, what he is doing and how you are doing with him. When my phone rings or my inbox has an e-mail, my immediate thought will be, “It’s about him.” Continue reading

Feb 08

Guest post: Autism and My Child: Getting Familiar with What I Already Know

Mama Bear is the mother of 3 young boys, the oldest suffering from Bipolar 1 Disorder and the youngest diagnosed with depression and possible Aspergers Syndrome. I write a blog to let go of my pain and to help support others by letting them know they’re not alone. Her blog is here: http://mysonhas2brains.blogspot.com/

mapMy recent experience in having my youngest son assessed for autism spectrum disorder has taken me for a bumpy ride. At first, I went through a period of grieving that made it hard to eat and sleep. This was surprising since I never went through this stage with my oldest son when he was diagnosed with a mood disorder. Sure, I was devastated at times, but I didn’t struggle with a feeling of loss so abruptly. I think it was due to my desperate need for my oldest son’s rages to stop and my understanding early on that he had a brain problem. Where with my youngest, I had always believed it was just a stage that he would eventually outgrow. Next, I struggled with my guilt and shame for not seeing my son’s symptoms sooner, I felt like a terrible mother who now had 2 kids cursed with a disorder. As I started getting down to business, preparing for our appointment with the Neurologist, I was forced to face all the unknowns and to explore a world I was unfamiliar with. What followed was a long, slow exhale and a feeling of peace. Continue reading

Feb 01

Guest blog: Dating & Raising an “Easy to Love” Child

Today’s guest blogger is a 35-year-old mom with a 5 year old kiddo with ADHD and ODD. Her child has been on medication since August.

Note: ETL stands for “easy to love,” which is short for the title of the book: Easy to Love but Hard to Raise.

holding hands

If you asked me to define myself a few years ago, I would use the following words, “failure, divorced, single mother & thirty-one”. At the end of 2009, I asked my ex-husband of seven years, to move out of our home and filed for divorce. He unfortunately got himself heavily into drugs months before his eviction and as a result, he was a danger to me and my child, “M” who was 2 at the time.

M was always a “spirited” child from birth. As 2010 arrived, M was showing more signs of ADHD and M’s behavior was not for the faint of heart.  M’s acting out, biting, hitting and uncontrollable anger was exhausting and difficult. As M’s behavior worsened, I felt alone. It was hard for other family members and friends to understand M’s actions and often times; I was looked at as “the problem”.  I was emotionally drained. With working full time and dealing with single motherhood and my ETL, I wondered two questions. (1) if I would ever be able to get myself out there and (2) who would want to be a part of my madness?  For those that are single mothers and raising ETL kiddos, there is hope.

I decided to take a tiny leap and took the dating world on slowly. I tried EHarmony and went on a series of many bad dates.  Either the chemistry was not correct, date did not take hygiene seriously or moved too fast (wanting to meet kids after first date). I actually had one person that wanted to do a “family” date after two dates. That may work for other women, but not me.  Not only were the dates bad, but what single working mom really has the time to date, especially a mom of an ETL kiddo?  I came to a fast realization that (1) I barely even have time to shave my legs in the shower without M knocking down the door (2) makeup and trying to look cute are overrated (3) Babysitters are few and far between (4) uninterrupted sleep may outweigh a date (5) having thirty minutes to myself definitely outranks a date.

I admit, I had a negative outlook on the whole dating thing and it was not until I crossed paths with someone special that I realized dating might be okay.  I ran into someone I knew a long time ago and for me, there was instant chemistry.   Even though there was chemistry, our paths would not cross again for five months and when they did, I knew that this person, “B” was special.  We took things very slow and did not involve M for many months.

Once M was involved, things got interesting at times. There were times that M had massive tantrums and many therapeutic holds ensued in front of B, who never judged me. Throughout 2010 and 2012, M’s behavior was a see-saw of ups and downs and when there were downs, it was not fun.  It took a few years and a therapist to get M evaluated and on medication.  Even with M’s medication, M had shares of tantrums and moods. There are two evenings in particular that stand out.  One evening, M was in a mood and I had to give M the emergency meds for the first time. M was angry and having a massive tantrum that involved hitting and biting and a therapeutic hold.  Once the meds started working, M calmed down but it was about 30 minutes of “fun”.  While this was going on, B did not judge me, intervene and most importantly, did not leave.  When all was calm, B was outside and I stepped outside to tell him it was safe to come back in and B gave me a hug. I was in emotionally drained and in tears and B told me I was a good mom.

Another time, B came over for dinner. While I was trying to finish dinner and set the table, M started to get in a funky mood.  It escalated at dinner and I had to remove M from the table and put M in time out. I had to hold M’s door shut and M had a big one. M destroyed the room, screamed bloody murder and was throwing objects at the door.  B asked me if I needed help and I told him I have it handled and to enjoy his dinner.  Even though I did not find it funny at the time, I find it comical now, as this is my life at times with M.

Even though it took some time, I was able to find someone that does not judge me or M. B is good to M and provides a positive male role model for M, which I am grateful for.

Raising ETL kiddos is hard, draining and emotionally exhausting but there is hope! Through my story, I want to leave you with the following: 1) Single ETL mommies can date and have a successful relationship 2) your ETL kiddo will be able to handle someone new in their life 3) take things slow and take your time introducing kiddos in the mix 4) try to take time for yourself whether it is gym time, nap or relaxing 4) Humor can make the worst day a better one 5) Things may not be perfect but you can be happy.

Jan 09

Reader post: Let it Go!

Nana is mom to an 11 yr-old drama tween daughter, a highly gifted, highly adHd/SPD 8 yr-old son, and a stubborn 5 yr-old son who plays the clown. Wife. Employee. Volunteer. Friend. Artist. Craftswoman. Occasional Quirky Crazy Person. She blogs about all sorts of things at nanahgregg.wordpress.com.

letitgo copyI am terrible at New Year’s Resolutions. I’ve never really sat down and made an actual resolution – have always been a bit cynical.

Over the past few months, I think I’ve grown a bit, or matured or something, but I’ve been a bit more reflective.

Having been blessed with a twice-exceptional ETL and 2 other equally challenging kiddos, I am constantly looking on the internet and talking to friends about parenting issues. It’s such a learn-as-you-go occupation, being a parent. It’s so easy to get caught up in what I’m doing wrong, what my perception of ‘good parenting’ means, and what others think that I think I’m missing out on opportunities to be a great parent

So this year I am making a resolution. I’m writing it down, right here for everyone to see and so I can remind myself regularly.

Are you ready for it?

“Let it go.” Continue reading

Nov 21

Holiday fun! Relatives who don’t get your ETL child…

I posted this almost a year ago today and it’s still pretty relevant. Thanksgiving and the holidays are really stressful for kids like ours, and unforgiving family doesn’t help matters at all. I’m hoping this year’s holiday will be okay, but I have a contingency plan if anything goes wrong – pay attention to my child and leave as soon as things go awry.
Let’s get one thing straight from the get-go: I have a really great family. My parents, my in-laws, my sisters, their husbands and my nieces – all have been really understanding and forgiving when it comes to dealing with Little J.
Yes, there have been moments, like when my (very tired) mother-in-law was seated next to LittleJ for a 4-hour car ride and he talked non-stop from the maple syrup capital in northern Vermont all the way to their home in western Massachusetts , forcing her to eventually put her hands over her ears to try to drown him out, or the time he called my mom a Big Butt and my step-dad picked him up and turned him upside down to “teach” him not to do that, or the very first time he met his same-age, heretofore peaceful female cousin and within 5 minutes had goaded her into punching him in the head…oh, the list is really endless. But all in all, our immediate family has been very understanding and kind and generous in helping with Little J. Many times much more than I’ve managed to do so, frankly. And I really appreciate it. Continue reading
Nov 19

25 Things Special Needs Parents Want Their Children’s Teachers to Know

I’m giving a presentation today for people who are training to become special education teachers and to prepare, I asked the parents on the Easy to Love Facebook page what advice they’d give these future teachers. The advice they gave was spot-on – not just for people training to work with   kids specifically designated “exceptional,” but for ALL teachers, since most of our kids are mainstreamed.
Here’s the advice. It’s wonderful. Pass it around. Link to it. Print it out. Share.
  1. Children with “invisible” special needs, like ADHD, PDD, SPD, PBD, FASD, OCD, Anxiety,  ODD, Autism, Asperger’s, and many others manifest their disabilities behaviorally. It is EASY to blame the parents for these behavioral problems. It is ACCURATE to see these behaviors as a result of their brain dysfunction.
  2. Communicate, communicate, communicate. Communicate! We can’t help if we don’t know what’s going on.
  3. On the flip side, if we over-communicate, cut us some slack. We are not helicopter moms, we are experts in our own children’s special needs. They, and we, are often misinterpreted and we’ve found that the squeaky wheel gets the grease. Let us squeak! It’s not nosiness. It’s not pestering. Really, most days, we would much rather say “It’s your school, you handle it, don’t call me”– but we want our kids to be successful. Which means being their best advocates. Which means we call or email as much as is necessary. Continue reading
Oct 22

Guest post: The ODD Mom gives us 8 Tips for Surviving your Child’s ADHD without Losing your Mind or your Sense of Humour

This week is ADHD Awareness Week, which seems an appropriate time to share my thoughts on surviving your child’s ADHD. Granted, Bear is only 7 and we have a long way to go, but I think these tips can help no matter where you are in the journey. (For the record, I started this post days ago, but my own ADHD kind of got in the way and I ended up doing 23 other things instead.)

If you have a child with ADHD, then you know that there are days where you would not only happily sell your child to the highest bidder but might even be enticed to giving them away for free.

When Bear was first diagnosed, it was a relief. This wasn’t our fault. We weren’t bad parents. We weren’t to blame. There was something bigger than us at work here, and now we had to figure out what to do about it.

My instinct has always been to approach things with a sense of humour. If I can’t make it go away, I may as well have a little fun with it. It’s how I cope. Now that’s not to say I don’t allow myself to wallow every now and then or that I don’t take things seriously. I do, but my slightly warped sense of humour allows me to find the funny in some of the stuff we deal with. Thank God, cause we’ve dealt with a lot and while things are going really well right now, I know we have a lot of new challenges ahead of us.

So, how do you survive in the face of your child’s ADHD?

To read the rest, go to The ODD Mom blog itself!

Sep 24

Humor? Really? You Have to Be Kidding

I have always prided myself on having a good sense of humor. I can make other people laugh. I can stand in front of an audience of 200 and create laughter that warms my heart. I can poke fun at myself and sharpen my wit at my own expense. So why is it so hard to always be upbeat when you’re dealing with an ETL child?

There are so many emotions that you encounter during the day when you are dealing with kids that are not cookie-cutter easy bake kids. Embarrassment comes to mind. Public places, friends with children who “do” all the right things, sitting in church. Guilt, another favorite emotion. What did I do wrong? How come it looks so easy for everyone else? Should I try medication? Was it that glass of wine I had during my pregnancy? Who does he take after?

Continue reading

Sep 14

Letting Our Kids Suffer

by flickr user andyarthurLast night I attended my first parent group as a parent. Professionally I am a clinical psychologist and have been doing parent groups on and off for years for those parenting teens with eating disorders. This all came to a halt a couple of weeks ago when I started a two year sabbatical from working to be home with my own three adolescents. So when word got out that a parent support group was starting at my 15 year old daughter’s alternative high school, I thought Why not go? After all, you can never get too much support while parenting teenagers.

The group facilitator, a school co-director and talented adolescent therapist, introduced the idea of letting your teen sort things out by themselves. We all went around and talked about how difficult it is to see your kids suffer, how everything in your being wants to take their pain away even though logically you know that struggle is part of life, a valuable part of life. All of the nine or so parents there could relate to this concept. It might help for you to know that all forty of the teens at the school (tiny, I know) are there because it did not work out in “regular” schools, whether public or private. The students at this wonderful, creative, wacky, nurturing, and sometimes counter-culture school did not fit in socially, have learning differences, have had some trauma, or struggle with anxiety or depression to some degree. These are kids (and parents) who have already been through a lot. I am one of those parents. Continue reading