Being a Working Mom with a Special Needs Child

Snuggling with my baby
after work

Being a mom is just plain hard. Being a full time working mom with a special needs kid is really hard. But being the bread-winning working mom with a special needs kid is insane.I don’t want to send the wrong message with this blog post, this is not to throw a pity party or attempt to impress – this is just to try and give a voice to all moms of special needs kids (and really all moms), what we do is hard... really hard and we all deserve love, credit and kudos!

As for my job - I'm in a demanding role. I run a multi-million dollar digital catalog for a high profile department of one of the largest automotive manufacturers in the world. It’s a stressful job and I have very little margin for error. Just as I was finally getting the diagnosis of OMA, and then Hypotonia, and finally Joubert, we were launching two of our flagship products. I had to compartmentalize. I had to bring my A-Game regardless of how much I was falling apart inside. I would have to hide and cry in the bathroom, pull myself together, and then be back in a meeting 10 minutes later (blaming my allergies). 

And Dads... I don't want to discount Dads! Terry was bartending at two different venues and going to school full time during all of this craziness. He managed to get into all of the four colleges he applied to, while working, sometimes up to 7 nights per week, and dealing with his son’s diagnosis as well.

Ethan on a
rocking horse

Terry working nights was a blessing on the one hand, but its been hard on us too. Some weeks we were like ships passing in the night. He would be with the baby half the day, then drop him at daycare and go to work until midnight. I would work all day, pick the baby up from daycare and then do the night routine.

So what’s a day in the life like? This is our life a couple of days a week - I'm sure you can relate!

• At about 6:00am Terry and I both get up with the baby and split the morning routine: changing, feeding, dressing, packing, and walking the dog
• I leave at 7:30 and take Ethan to Physical therapy from 8 – 9am; Terry goes to class
• Take Ethan to daycare and get to work around 10am
• Work through lunch to make up for arriving late, then leave work at around 5:15p; Terry heads to work after school
• Pick up the baby from daycare at 5:55pm, get home at 6:15pm
• Walk the dog with the Ethan, feed him his dinner and give him his asthma medicine
• Do exercises with him for 40 minutes – not just exercises but problem solving, fine motor skills, drawing, music, etc. Anything to make sure we close the gap on his delays!
• Give him a bath and let him free play while I cook dinner
• Feed Ethan his night night bottle, nebulize him with Albuterol (on nights when he’s raspy) and put him to bed
• Eat my own dinner and watch TV for 1 hour
• Work for an hour (either work on job related stuff, or budgets, or paying bills, or organizing receipts, or this blog, etc.)
• Clean the house (dishes, baby bottles/sippy cups, toys, mail/files, etc.) and prep for the next day (lunches, daycare necessities, etc.)
• Read for 30 minutes and sleep (by now it’s about midnight)
• Terry gets home

49ers Win!

Not every day is this hard – sometimes it’s easier…  and sometimes it’s even harder. I mean, just his doctors appointments alone! Our son’s file at the pediatrician is literally 2.5 inches thick already. I think I was 10 years old before mine was that thick! Do you know how many different doctor’s appointments and referrals you need to get a file that thick?!

 But these days go at the speed of light and you don’t even time to think – you just look back at the end of the week or month and think, "Sheesh – thank goodness breathing is involuntary or I might not have had time to take a single breath!”

So again,  to all moms, working moms, breadwinning moms, and working moms (and dads!) of special needs kids – I feel you! I empathize. I understand. You are all my heroes and my mentors. I toast to all of you!