Let’s face it, marriage is hard.  The initial dating stage, romance & courtship is all fun and games…usually.  You don’t have fights over bills and kids and when you think you found the right one, your head is usually in the clouds and you walk around with a permanent smile.  You get married, play house, talk about your dreams of children and picket fences.  You pick out furniture together and settle in.  Then you get the big positive sign on the stick and you think life couldn’t be better.

9 months later when you are as big as a cow and really don’t think you will make one more day, your precious baby will arrive.  It will be a day you will never forget and it will trump any day that has come before it.  Including your wedding day.  You will never forget that day for as long as you are alive and you cannot begin to imagine loving another human being nearly as much.

Weeks go by, months, maybe a year.  You are tired and you may start having fights whose turn it is with the baby.  My husband would say he had to go to Home Depot and I would say, “You are taking the baby, right?” I couldn’t remember what it felt like to have 30 minutes to myself.  So he did.  But, for the most part, new moms are exhausted and on call all of the time.

Moms with special needs kids will remember the first signs, first signals that maybe something isn’t right.  You may begin to fight with your spouse about therapy- how often, what kind- are we doing PT and OT?  Should we be fighting for more services?  You may be too tired to reconnect, physically and emotionally.  Every ounce of your being is spent taking care of your child.  You may not have time to go to the gym and you think- let me get this under control and THEN I will take care of myself.  You may be depressed.  You may be angry.  You may be all of these things and your relationship can be taking a nose dive, quickly.

10 ways to stay connected 

1.       Take turns.  There will always be therapy appointments, IEP meetings, tons of evaluations and doctor appointments.  Not everyone can be everywhere, all the time.  It doesn’t make you a bad parent if you share the load.  You are both committed parents and if only one person is pulling their weight, there needs to be a discussion around this.  No one can do this alone.  If you are a single parent, look for support from family or friends. 

2.       Take care of yourself.  I know this is easier said than done but it is true- if you don’t take care of yourself, you cannot take care of anyone else.  There more you take care of yourself, the better you will feel emotionally. Map out sleep and exercise for the week the same way you would schedule a speech or OT appt.

3.       If you are depressed, seek help.  Consider medication.  I know so many special needs mom who have started medication for anxiety or depression or both and it made a world of difference.  At the very least, see a therapist.  Cry, scream, talk about it- just get it out.

4.       Have sex even when you don’t want to.  You will feel reconnected and remember the reasons why you love each other in the first place. It will also release endorphins.  Win-win.

5.       Be kind to one another.  It is so easy to take out the stress out on each other.  Try not to do it.  Apologize if you do.

6.       Give each other a certain amount of time per week for alone time.  It can be as little as 1-2 hours and it can make a world of difference.  I know a one hour massage can recharge me very quickly.

7.       Be there for your spouse.  I think a lot of dads think they need to be the strong one and hold it together for the mom, but dads need to break down too.  Moms need to give them the time and space to do that.

8.       Find doctors you trust.  It helps when you have someone you trust leading the way.  A lot of fights come from not knowing, uncertainty.  When you feel in control, it is not nearly as overwhelming.

9.       Celebrate everything.  Milestones, birthdays, anniversaries.  Find the good where you can and make a big deal out of it.  Take pictures of the good days, video the first words and look back on them during the darker times.

10.   Say “I love you” every day.  It may be the most effective way to stay connected.

To medicate or not?  That is the new question of this generation.  We are the parents of the generation with ADHD, Autism Spectrum Disorders, OCD, Tourettes, and a multitude of other disorders that are diagnosed as we lay out thousands of dollars our insurance won’t cover.  And most of the time, they don’t have the answers or will say something like “We really won’t know until they are 8 or 10 or 12 or 16….” So parents, do we medicate or not?  Do we continue with behavioral therapy by itself praying that all of the positive rewards and star charts are going to make a difference?  Or do we bite the bullet and add a few chemicals to the already chemically unbalanced child?

This is not an easy decision for any parent.  We started our son on medicine at a very early age. He was too young to swallow a pill so we mashed it up and put it in chocolate pudding.  Only later to find out it wasn’t supposed to be mashed.  We had him on it for years and wondered why we didn’t see that much of a difference.  We have been through an entire pharmacy shelf and about 6 different child psychiatrists trying to find the right medicine, the right cocktail.  My husband and I have had major battles wondering if we should add more medicines, increase doses or take him off everything altogether.  If you haven’t been in this situation, trust me, it is stressful. I now have to color my hair.

We ultimately decided to give our Aspergers/ OCD son a break from medicine.  It wasn’t good.  We saw an increase in behaviors, both obsessive and physical, and got way too many calls from school.  School made it very clear that although they can’t tell us to medicate him, maybe we should see another psychiatrist?  I agreed.

We made yet another appointment with another psychiatrist.  I was not looking forward to this visit.  How do you start at the very beginning with the 8+ years of medical/psych history?  It would take weeks to tell her everything.  Somehow, this psychiatrist simplified everything.  She was the first one that said he needed to be on something for the OCD which would in turn, decrease the aggressive behaviors.  She explained that the aggression was due to him getting “stuck” because of his OCD.  So, we started him on an SSRI and an ADHD medication.  This time, at the right dose and not mashed up in any dessert.

For the first time in 8 years, he is truly happy.  I am not saying that medication is the answer to make all special needs children happy, but I am saying it is the answer for him.  He isn’t getting stuck on electronics, or getting a perfect score and he isn’t throwing chairs across the room when he doesn’t get his way or he loses a game.  My house is calmer now and my other children aren’t walking on eggshells.  It has been a long journey and I am still holding my breath (we still have to get through puberty and growth spurts) but for now, I will take it.

How many special ed moms out there are overwhelmed on a daily basis?

We have our routine- wake up, get the kids dressed and fed, try to make ourselves look presentable and do what we can to show the world that we are OK.  On the outside, anyway.  We rush to get them to school or therapy or both.  Homework, rushed dinner, bath/shower…and then we collapse.  And start all over again the next day.  

For most of us, we don’t slow down.  We can’t afford to.  I used to think if I slowed down I would never start again and I was truly terrified (excited) by the thought of curling up in a ball and sleeping for a week.  But, we can’t allow ourselves to really do that, right?  What doesn’t kill us makes us stronger?  I used to love when people told me “I don’t know how you do it”.  My response always was “what choice do I have?”

I am not complaining.  I love my children more than anything (I had 5 and still would want more if I could) but I am exhausted.  Sleep deprived past the point of insanity.  I dream about sleep the way kids dream about Disney World.  A night out with my husband sounds so good until our heads are in our plates and we wonder if maybe we should’ve ordered in dinner and attempted to watch a movie.  A far cry from my 20’s where I was out until early morning, drinking myself silly and still had the stamina to do it all over again the next night.

Here is the thing.  I think I am so overwhelmed that I am missing the moments that make it all worth it.  I think we all do this and even though we know we are doing it, we don’t know how to change it.  I know I need to slow down and cherish these moments or I am going to turn around my children will be adults and the only thing I will remember is that I rushed through their childhood, 99% of the time feeling overwhelmed.

The question is, “How?”

The other night my son kissed me goodnight and started getting silly.  He asked for a butterfly kiss, an elbow kiss, an eye kiss and an ear kiss.  We giggled.  We cuddled.  And it was perfect.  All of a sudden, time stood still.  It was one of those moments that I am freezing in my mind.  Soon enough, he will be a teenager locked in his room and won’t want to give me sweet, silly kisses.  They will be far and few between.  

And it came to me.  I didn’t have to change what I was doing, I just had to slow down.  Calm down.  Savor those kisses and giggles and spend more time actually being present than worrying about the future.  

There will always be more laundry and homework and cleaning…

I am choosing tickle fights, giggles and silly kisses.