Most Wednesdays, a special needs mom, military spouse, military spouse small business owner or inspiring single mom will be profiled on Look@Her. These are very special, inspiring and hard-working women. I am honored to be able to recognize them for being wonderful mothers, wives and role models.
Without further hesitation, let me introduce…
- Name: Angela M.
- Spouse: ‘Hubby’ and I started off as truly best friends in 1999. Once we decided to take a great relationship to a romantic level, within weeks we decided to get married. The rest, as they say, is history.
- Children: Three children, ages 5, 3 and 1. Two out of the three have serious special needs.
- Current Location: Ontario, Canada
- Angela is a special education teacher.
Connect with Angela:
- Twitter: @specialneedmom2
- Blog: http://halfpastnormal.wordpress.com
Angela’s Story:
- What are your child’s special needs? My three year old daughter, Little Miss Adorable, has a rare syndrome called Prader-Willi Syndrome (PWS). You may have heard of it – people with this syndrome do not experience fullness when eating and can literally eat to the point of illness or death. PWS has two stages: infants with PWS have ‘failure to thrive’ as their poor muscle tone inhibits them from feeding; the second stage is where the insatiable appetite develops (usually between ages 3-5). Little Miss Adorable is starting the second stage, her meals are closely monitored and we have a team of medical professionals who oversee her care. She is three years old cannot walk due to very poor muscle tone. She bum-shuffles around, playing ‘mommy’ to her many baby dolls. She loves all things pink and glitter, and is a budding fashionista. My five year old, Mr. Sensitive has Duchenne Muscular Dystrophy and Sensory Processing Disorder. Duchenne Muscular Dystrophy (DMD) is a relatively common form of Muscular Dystrophy, approximately 1 in 3500 boys has it. DMD is a genetic disorder where the protein molecules in muscles are not rebuilt properly – eventually all muscles will be filled with fat cells. For the person with DMD, this means they eventually lose the ability to walk. It also means that heart function, breathing and ability to swallow food are affected. Recent improvements in medical care mean that life expectancy has increased dramatically. Just a few years ago, young men with DMD were expected to live until their late teens or early twenties. Now men with DMD can expect to live into their 30s. We feel fortunate that these medical improvements have happened in our lifetimes, and hope these improvements will continue.
- Please share your journey as a special needs mom: I’ve written about this at length on my own blog and elsewhere, so I won’t spend too much time on this. I will say the journey for both my children started with my own ‘mom sense’ that ‘something is wrong.’ For both my children I knew ‘something was wrong.’ Of course, I had no idea what was wrong, and this led to me chasing countless doctors and medical professionals for a diagnosis. Once we had a clear diagnosis it was something of a relief – now we could work on helping my children.
- What has been the greatest difficulty/challenge you have faced in parenting a child with special needs? Honestly, my biggest challenges relate to time – both managing time, and dealing with ‘not enough time.’ We juggle work, school and appointments, and struggle to fit ‘enjoying life’ in our schedules. I’ve cut many things out of my life in order to deal with a time crunched-life and I think my life is richer for it.
What advice would you give other special needs parents? The biggest piece of advice is to trust your instinct as a parent. You know your child best, and know if they are happy or a particular therapy is working. Remember your child is still a child, although there may be many different therapists involved in your child’s life; your child still deserves a childhood – a time for doing typical ‘kid stuff.’ This can get overlooked in a dash to countless therapy appointments. Make time for your child to still be a kid.- How do you take care of yourself and your marriage? We learned to take time for our whole family very regularly. We think nothing of spending the day at a local park or conservation area, just exploring the outdoors and spending time together. Hubby and I love spending time together while in the car on road trips – it’s a rare time to sit down and have a conversation together (albeit the kids are in the back seat listening to children’s music). For myself, I try to take time for myself to do something I enjoy. If the dishes sit in the sink while I’m writing a new blog post, that’s fine. The dishes can wait.
Thanks to Angela M. for sharing her story! Stop by her blog and read more!
If you are a special needs mom, military spouse, inspiring single mom or a military spouse business owner, I want to profile YOU on Look@Her please send an email to msmommyhh6@yahoo.com to receive the questionnaire and more information.
Live, Love & Learn,
Ms. MommyHH6
wow what an amazing story and an amazing mom and kids that really touched my heart. I have two autistic children and its very challenging but also very rewarding i have a special place in my heart for special needs children
Thank you for sharing you story. I appreciate and agree with your “Mom Sense” and then chasing doctors. That was basically how we finally got an Autism diagnosis for our now 11 year old son. It is a constant challenge as a parent to feel you are doing everything in your power to give them any and all therapies, assistance, etc. Also hard to then say, “Oh, any child would do that.” We also had a Baby Girl who passed away at 16 months from health complications due to Down Syndrome. I use to think the challenge would be having 2 children with needs. Now the challenge is having one gone. Thank you for being an example of strength, love and determination!