Mother's Day for the Special Needs Mom. . .

Wikipedia defines mother's day as a "day honoring mothers, celebrated on various days in many places around the world" and today was supposedly the 100 Anniversary of the Mother's Day Celebration.

I wonder how many decades it will take for the world to start celebrating a Special Needs Mother's Day. I could certainly use one and I'll bet that, if your day was anything like mine, you agree.

Yesterday, I spent the day chasing back and forth between my kids' soccer games, Michaels (to bribe my special needs son for behaving during his sister's games) and Sam's club to pick up pizza dinner and pictures for my son's soccer team. Okay, that sounds pretty normal for a soccer mom, but our family is anything but normal and taking the kids anywhere is a trial.

I spent the night hopping in and out of bed due to multiple tornado warnings, got maybe 3 hours of sleep and got dragged out of bed just in time to take my overstimulated/unmedicated Autistic daughter and severely ADHD son to the late church service.

No one brought me breakfast in bed, no one said Happy Mother's Day and my husband had the nerve to tell me off for trying to get my son to swallow one of his quick acting ADHD meds. to calm him down enough to get through Sunday School.

After getting stared at by the traditional Mother's day church crowd for not dressing up enough, we stupidly got in the car and headed for Cracker Barrel. We usually go there on Sundays after early church. We got there at 12:30 pm (bad idea on any Sunday) and I conceded very quickly that waiting over an hour for a table with our over-stimulated children was not a good idea, especially since my son, who is allergic to milk and wheat, can't eat there.

We tried Folks next and I walked right back out the door, when I saw that the waiting crowd was packed in tighter than a sardine can. So we went across the street to the Atlanta Bread Company, because it was amazingly sunny today, given last night's storms, and I wanted to sit outside on the patio. Naturally, my SID son refused to sit outside, because it was too windy. So I stayed outside with my daughter, while my husband and son ate inside. So much for mother's day brunch.

Next we went to Lowes, because we traditionally plant flowers in the yard on mother's day. My husband was annoyed, because he wanted to get back to the house and take a nap before he had to clean up the yard from last night's storms.

So I pick out some lovely budding lilies and hydrangeas and we head home. My husband leaves the plants in the back of the car and heads straight up to bed. Three hours later he gets up and starts the clean-up process.

And, to make a long story short, here I am writing my blog at 10:15 pm and half of my new flowering plants are still sitting in the garage in pots. My husband is enjoying the jacuzzi bath that I poured for myself after vacumming the house, doing the dishes, cooking supper and cleaning up the mess the kids made between 7 and 9:30 am (they slept through the storms). My husband's only comment when he saw me in the bath, was "Are you done yet, I need the hot water."

ARGHHHHH!!!!

Honestly, I can't blame him. We can barely handle our kids' issues and, when you factor in a storm and an otherwise too busy weekend, we we're sunk, no matter what we tried. I'm not really mad at him or the kids, I've just got the WHY ME syndrome.

It didn't help that my own mother called last night to ask, if I was going to pack my car with all of our special needs gear and medications and drive all the way to Timbuktu for my aunt's Memorial Day Race party. Let's just say it's a 10-hour drive, we would have to pay for a hotel, my husband can't afford to take time off from work and gas is almost $4 per gallon.

I can't afford to drive around town, much less all the way to Timbuktu.

Of course she didn't care about any of that or the fact that our daughter is in a soccer tournament that weekend and we couldn't go, even if we wanted to and could afford it.

And to top it all off, no one called or e-mailed to say Happy Mother's Day or to check to see if we were still alive from the tornadoes. To be fair, I must admit that my SIL sent me a text message, but I would have appreciated a quick hullo.

I did get a call this afternoon from a special needs parenting friend. She was concerned about how we fared last night and she keeps in touch with me about the kids. THANKS SO MUCH, YOU MADE MY DAY!

As I always say, "It takes one to know one."

So, back to today's theme. I have no intention of waiting for the rest of the world to realize that special needs parents need a break. I'm taking a day for myself.

This Thursday, I'm playing hookie (personal day), spending the day at the spa and making myself feel great so that I'll be totally relaxed when my husband takes me to dinner at my favorite restaurant. Okay, so it's my 15th anniversary or I wouldn't have a sitter, but as far as I'm concerned it's Special Needs Mother's Day and here's my wish list.

Nianya

Marriage and the Special Needs Child. . .

I applaud all parents, married, partnered or single, who struggle with raising their special needs children, but I feel that it is important to note how difficult it can be to maintain a marriage while doing so.

In a country where the divorce rate has reportedly risen as high as 50 percent for first time marriages, the rate is reported to be considerably higher (as high as 80 percent) for marriages involving special needs children.

I personally know or know of quite a few couples, whose marriages failed to survive the stress of raising their special needs children. I often wonder how my husband and I do it. Over the years we have come to realize that our children inherited their special needs (ASD, SID, ADHD, Asthma etc...) through our combined family histories, not due to fertility treatments (our son was in vitro), childhood vaccines or environmental exposure, we also know that we have many of the same issues and we try to laugh when things get so bad that most people would cry.

Still, that doesn't explain why we remain so committed to our marriage when others could not. My only conclusion: our faith binds us in ways that we may never understand, but have learned not to question. I am constantly reminded of the poem Footprints in the Sand, whenever I feel like I can't go on. We always make it through each crises, because our faith carries us when our physical strength and willpower fails.

Today I read a bittersweet update about Baby Noor, a child who is very near and dear to my heart and the heart of my good friend Debbie Stone, who illustrates my children's books. Debbie spearheaded the initial campaign to bring Noor to the United States for life saving surgery and I had a once in a life time chance to meet and hold this precious child before she returned home.

The update, which included pictures of Noor, now a beautiful 2.5-year-old, mentioned that her parents are now divorced and her father is remarried. Sadly, I was not surprised.

In some cases, divorce or separation is unquestionably in the best interest of the children involved. In most cases, however, the children are simply caught in the middle and this often continues after their parents separate and/or divorce. Many divorced parents disagree about the need for and/or cost of special services for their children.

In the worst case scenarios the children fail to receive adequate/necessary care from both parents. Many of these children end up in foster care or child protective services.

For this reason, I believe that we must provide more support programs and networks for parents of special needs children. Whether single or married, parents of special needs children need support networks and access to affordable services for their children.

For the past several years, I have been working to develop a Christian-based ministry directed toward helping parents of special needs children get the services and support they need to keep their families together. My special needs children's ministry, including this blog and the SNK Parents google group, is partnered with Lifeover Ministries, which provides financial assistance to qualifying families with special needs children for out-of-pocket medical expenses, home and car repairs and children's recreational activities.

We are currently working on a detailed website, which will provide information for parents to apply for Lifeover grants. Please stayed tuned for future updates on our progress and feel free to contact us through this site, if you have any questions.

Nianya

Links:

Providing for Employees with Special Needs

The Autistic Family Life Cycle: Family Stress and Divorce

The Relationship Factor: When Special Needs Challenge a Household