How I became a Special Needs Mother - Chapter Two

By the time Jesse was 3 we knew she had a speech problem, she communicated mostly by pointing and screaming, if we did not immediately understand what she wanted.

I looked into the possibility of speech therapy, but she was too old for our state's Early Intervention program (Birth - 3) and she was not yet in school. And, everyone kept telling us that she would talk when she was ready.

Speech of course was not her only issue, she was also very clumsy, not just the toddler/twaddler issues, but a total lack of balance and awareness of her surroundings. At age 2 we found a wonderful gymnastics program to enroll her in.

We had no idea at the time that gymnastics served as an alternative to autism intervention. Over the course of 6 years from age 2 to age 8, Jesse's gymnastics program helped her develop her fine and gross motor skills. It also gave her a sense of accomplishment. The beautiful smile on her little face when she raised her trophy each year with her classmates at their spring show was priceless.

Jesse had all the classic signs of autism and still we thought she was just a difficult toddler/pre-schooler, who needed a strict routine.

Part of that routine was Jesse's new Montessori school, which she started attending when she was 3.5 years old. We had interviewed that particular school before placing her in her first school at age 2. At the time, the new school was still housed in one building and the toddler room was very small.

When we went back to the new school for primary Montessori (age 3-6), we were amazed at the changes they had made, including expanding into another building. Jesse's new teacher was absolutely wonderful with her and the Montessori method was perfect for her then.

For the next two years, we settled into a predictable routine with Jesse. She screamed every morning when we dropped her off from school, she continued to have pottying accidents, even though we forced the issue of potty training during the summer of her third year, and her speech improved only marginally.

However, by that time, we had learned how to communicate with her. We had a good idea of what situations would set her off and we avoided the inevitable screaming fits from changes in routine, as often as possible. In other words, we stayed home, joined a church where she could quietly color at our feet during the service and did not take her out of town, except for visits to close relatives.

Baby sitters were not a word in our vocabulary. If we did have to go out at night, dh and I arranged for a relative to come and stay with us. One night, we literally had dh's aunt distract Jesse by the kitchen door, while we snuck down the stairs and out the front door to attend a black tie affair.

When Jesse was 4.5 years, her school conducted routine speech and hearing testing. They recommended that we have the county formally test Jesse to see if she qualified for speech therapy.

So we did.

And the county turned us down for services. They told us that all of her issues were developmental. She would improve her speech with age.

There were right on only one point, her issues were definitely developmental, just not the type they wanted us to believe.

By that time, we were already trying rather avidly to have another child. This time we only waited six months before seeking fertility treatments. After some initial tests, and before going back to Clomid, I found myself unexpectedly pregnant.

My fertility doctor made me come in every other day from week 4 through week 7 for blood tests to make sure my hormone levels were increasing regularly and put me on some medication to help me along.

Everything looked great, until the day I went in for my 7-week ultra sound.

I will never forget the look on the nurse's face when she refused to tell me anything and would not let me look. I knew exactly what my doctor was going to say. No Heartbeat.

They gave me a choice of scheduling an immediate D&C or waiting one more week for another ultra-sound just for peace of mind. We opted to wait and I found myself in the OR having a D&C two days before Christmas.

It was a very bad time for us. That was Jesse's first Christmas where she really looked forward to Santa Clause and I spent it on the couch on pain medication.

Blessedly, the New Year and Jesse's 4th birthday breathed new life into our family.

When Jesse continued to potty accidents in the fall of her 3rd year, we bribed her by booking a cruise on the Disney Boat for her next birthday. We showed her the video of the cruise ship and told her she could not go unless she was fully potty trained.

For the next several weeks, Jesse went around saying, "I stink in the potty, I go on the big boat by my birthday." In retrospect, that was probably her first complete sentence. And, sure enough, by Christmas that year she did just that.

The cruise itself was wonderful and a trial in patience. Jesse freaked every time she saw the Disney characters running around the ship and she lasted less than 15 minutes in the Kid's Club before they paged us.

In Jesse's defense, she was still fighting a 6-week ear infection; the result of losing her second set of tubes a couple of months before.

Needless to say, we ended up seeing the ship's doctor, going on stronger antibiotics and apologizing for several episodes of losing her lunch/dinner.

By the end of the cruise, we managed to convince Jesse to pose with a few of the characters when no other kids were around. Most of the time, as you probably know, everyone lined up for hours for the scheduled character photo-ops.

Not my Jesse.

Among her other issues, she was still rightfully sulking about her new, extremely short page-boy haircut; the result of a very bad hair stylist at our local mall. I had to take Jesse to another town with a special kids salon to get them to fix the damage and remove the rat-tail.

When we returned from Jesse's birthday cruise, we made a decision, which ultimately changed our life.

We decided to adopt.

Nianya

Pulling my Hair Out . . .

I have been so stressed out for the past few weeks, I'm surprised I'm not bald.

I spent the first 6 months of the year concentrating on my goal of getting in shape and collecting all the accessories I needed to photograph our Grand Canyon trip. Once the trip was over, I came back and my "normal" life resumed: my life as a mother of not one, but two special needs children.

For years, I have gone from one crisis to another without focusing on both my children's needs at the same time.

Last year, we narrowly avoid having to deal with two IEPs, by enrolling our son in his former Montessori School after his issues forced us to withdraw him from charter school Kindergarten after less than 3 days. He could not function in the charter school without modifications, we couldn't get the necessary modifications without going through the 3-month IEP process and we've been fighting to enforce our autistic daughter's IEP for three years now.

I was appalled that the school expected our son to be able to read at least 100 site words by the end of his first semester of Kindergarten. Supposedly, the 100-site-word rule is mandated. That's all well and good for most children, but completely out of the question for a severely ADHD, probably dyslexic child with autistic tendencies.

My 6-year-old can build anything from Lego's, he puts together model toys meant for kids twice his age, he loves art and he's very bright in math, but he can't read squat.

So this year, I'm not only paying private tuition to keep him in Montessori elementary school, but I have to hire a tutor to teach him how to read.

Major de ja vu.

We went through the same issues with our daughter 7 years ago. When she entered 4th grade she was reading on a pre-K level. We finally cried uncle that year, pulled her out of Montessori, got her a full IEP and put her in pubic school where we save thousands on resource services and private tutoring.

Now we're back between a rock and a hard place with her brother. We can't afford private tuition and tutoring, but we want to keep him in Montessori, where he can excel in other subjects, like math and science.

If we move him to public school, he will get the reading resources he needs for free, but he will be bored out of his skull with a regular first grade curriculum and, when he gets bored, he gets into trouble. He's a budding Malcolm in the Middle.

At the same time, we are once again going through the entire process of renewing our 12.5-year-old daughter's IEP. The school is fighting her autism diagnosis and would like to drop her speech therapy; we're fighting to get back the resource hours, which they cut in half last year, because we're concerned that she will not be able to mainstream when she enters high school in two years; and we're having to learn to live with the widening social gap, which she faces as she enters her teen years. Most of her peers don't understand her inability to socialize. She's like an 8-year-old in a 14-15-year-old's body.

As for me, I'm have to deal with both kids' issues, while working full time and suffering from very painful and persistent cysts. I'm going to need a wig soon.

Nianya