Saturday, July 18, 2015

Special: Life with Four Different Special Needs Children

Special needs, disability, learning disorder, and many more are words that imply that something isn't "normal" with a person. How many call people weirdos because they do something different than what they do. My own hand is in the air on that one.

Now most people freak out when they hear that I have special needs children. True, I get that some of them are genuinely concerned about me and the children. But then there are the few that just look at me like "Can you really handle that?" Yes!

For starters, I have full faith in God. I have read where many moms don't believe they were chosen to be the child's mom that they look at it as an obstacle course. That's not what being a mom means to me. Maybe that's what it means to you, to find that moment when you can just be you again and not have to think about the child you raise. I'll be like my dad thanks, who I STILL have text and let him know that I got home from my day's festivities whatever they might be.

God gave me each and everyone of my children. He had countless other women on this planet that He could have chosen to be these children's mom, but here I am with my youngest ones on me. (I'm a babywearing momma!) I'm not bragging when I say this, but I have a degree in special needs education and God knew that I longed for a special needs child. He instead gave me four. I used to be the college girl that would get mad at the school system for the parents because I knew what the law says is required of the school.

Secondly, with that degree comes expectations of me from myself. I used to be in a room 10 hours a day with two aids with a classroom of 10 special needs students. It was a blessing for me. Those memories are some I wouldn't trade for anything. I've seen both kinds of parents with special needs students, the hover kind where even a tiny scratch is uncalled for to the parents that literally forgot their child at daycare. I know what's to be expected of me as a parent.

Another fact about me, I have traveled to many educational conferences. The fact that the U.S. has the most medicated children makes me sick at my stomach. That's why I had my children almost triple checked to make sure the diagnoses lined up. Yes, some children really do have autism and some children have a behavioral problem. And sometimes it's not the child, but rather the parent doesn't know how to parent.

When my dad first came to me with Aspen in tow I was worried that she would have autism or that it was behavorial. She doesn't (We have had her tripled checked.) She just has a sensory disorder and it's not all the senses that are affected. She is the 5%-10% of children that just suffer from sensory disorder without having another disability. She likes weighted blankets, and she is very picky about what is used in her bath. She loves smells, but hates loud noises. She has hawk eyes, and that comes in handy sometimes.

Aspen loves to play. She plays well with other except with noise making toys. I work with three times a week on how to handle noises. Ways of helping her cope. The other two days she has Occupational Therapy. It's amazing how much she has overcome since going to OT twice a week. She has become such a perfect big sister!

When May Dawn came to us, I could tell automatically when she smiled that there something. She was very socialable instantly. She had come from a very abusive household situation which resorted in Vin getting custody of May Dawn, and her three siblings.

The morning after they arrived Aspen comes to me and says that May Dawn hates loud noises like she does. My radar flipped instantly and I took a closer look at May Dawn. I knew how to look for Williams Syndrome because I have had three students in my past that have had it. I quickly hoisted May Dawn up in my arms and went digging for my Williams Syndrome checklist. It was blaring right at me.

The next few weeks were filled with us getting into the Williams Syndrome Clinic in Florida since it's the nearest one and I wanted complete validation that May Dawn had WS. It was confirmed. I had to call in all sorts of favors from my teaching days. I jumped the speech therapy list and early intervention lists thanks to my friends in that area of expertise. An old friend became her Occupational Therapist (who is different from the one her sister sees.) Her musical therapist sees her once a week. This is why when I mentioned that I was fit to be a mom to special needs children, I meant. My network was built for this.

Pixie (yes her real birth name) is my daughter that has cerebral palsy.Her shy little self came right up to me signing Disney characters and we bonded instantly over that. We are still trying to completely calculate her percentages and see where she is with everything. Pixie's cerebral palsy was something I have seen as well. It can be very frustrating to a child. Pixie is able to stand by herself and in time will be able to walk as well. It will just take plenty of therapy.

Pixie has ataxic CP meaning she doesn't have balance and control over her movements. Some of her speech is very slurred and that's why she uses sign language to talk to people. We should in the future be able to overcome the speech impairment. That's why I have her using the same speech therapist that May Dawn uses. It's fantastic because sometimes they help each other!

Nyx is my last child with special needs. She is also the one with the most. It's heartbreaking to me to know what this child has been through even from day one of her life. She was put up for adoption the moment she was born.

Yes, Nyxie, as I call her, is suffering from many things. The doctors were wondering if she was suffering from Fetal Alcohol Syndrome or something else. Turns out it was something else. She has Angelman Syndrome which is is a chromosome disorder. But this syndrome like Williams Syndrome means that a smile will be on her face. Today I'm actually making appointments for her OT, PT, and speech therapy.

My life will be filled with doctor visits, meetings, and therapy, but they are miracles to me every single one of them. To me they are all perfect, and special in their own right. I enjoy every second with them. Through frustration and happiness I will find joy. I will make sure they get the care they deserve.

All of this being said all of my children are special to me and Vinny.

Aspen loves to run, to look at and read magazines, and to eat grilled cheese. Dreams of becoming a tour guide.

Joelle enjoys life more when it's raining and when she can paint and loves berries! She wants to travel the world and take pictures when she grows up.

Rain is my gymnast! She has already been in gymnastic competitions and is just five. She also runs races with me and loves Ramen noodles.

Pixie adores ragdolls and rocking them. She loves Disney as much as I do and loves glowsticks. She also loves waffles and chicken can be added to them.

May Dawn will eat peaches all day long if we let her! She spends a lot of time with her Uncle Frankie learning to play the piano and she loves to dance and sing.

Luna is my little witch that will some day get a letter to Hogwarts. There she will drink more Pumpkin Juice than she does now and find herself an invisibility cloak better than Harry Potter's while she mixes potions.

Nyx enjoys being outside and being pulled around in her wagon. She loves eating eating chicken anything. She also loves bathtime!

Brad loves pets. He also loves riding around in his carseat. He adores apple juice and mashed potatoes.

Arbour is my little air monkey. She loves swings, playing airplane, and stepping all around. She loves Gerber puffs in banana.

Ella Michael adores well she adores mommy's milk. She loves swinging in her hanging crib and hearing us as a family sing.

Vinny loves Harry Potter and playing golf. He loves cornbread deer chili and apple pie. Music is a huge part of his life.

So that's about it for my human family. I could have told you about my fur babies as well, but that's for a different time. If you have any questions feel free to email me, comment below or find me on social media.


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