Tuesday, 29 April 2014

Learning more

We had moved into a new house, one with a large yard, because 4 children do not fit well into a 2-bedroom apartment. In moving, we had crossed county lines, so I gathered up all my documentation, and started making phone calls.

The first place I called, I found in the phone book. It seemed that this county had a self-referral speech therapy program called SmallTalk. I called the number and spoke with the SLP, explaining what was going on with my daughter. I also explained that transportation was difficult now (as I had moved out of the city and did not drive), so what I was looking for was self-education. Teach me to teach her.

I met with the SLP and watched as she did some assessment and therapy with my daughter. At the end of the half-hour session, she explained what she had been doing, and gave me some things to do to work on specific issues with my daughter. This turned into a regular pattern. We met with the therapist once every 3-4 months, for a mini-assessment and to get new instructions. I adapted them at home, and since I was already homeschooling one child, I simply created my own program for this child.

I began seeing advancements right away. Within 3 months I had been able to help her gain basic communication skills. She was able to tell me her needs and wants, and finally, finally the screaming sessions slowed, and eventually stopped.  I was able to help her learn to self-regulate, and her social skills began to improve.. and a little social butterfly emerged. She began to attend Sunday School at our church -- and it was a wonderful experience that she really enjoyed! I was able to get babysitting for her, finally, and take a much needed break.

From SmallTalk, I was given a number for a self-referral occupational therapist. I called and found out to my delight that the therapist was willing to come to my home! We set up an appointment and again I asked to be taught so I could teach my daughter. The therapist worked with me and my daughter, even giving me books and games to use in helping her develop her skills. She came about once a month to check on us and give instructions. I added in her therapy to our already existing program, and again, saw immediate results.

Within weeks, I saw this child begin to dress herself, and gain independence. She started loving to color and draw, and it was amazing to see her personality come out. I learned to take advantage of her love of color and "pretty" things to help with basic hygiene tasks, like washing her hair or clipping her toenails. What had been a two-hour screaming torture to clip nails, turned into 15 minutes with the promise of sparkly nail polish. What used to leave both of us in tears to brush her hair, became a morning ritual that required me to not only comb her hair but now put it up in pony tails with barrettes or some of the dollar-store crowns, so she could be a "princess". The promise of new earrings made washing her face a breeze.

From the OT, I learned of Family Services. This innocuous sounding name hid a gem of a service. I received a dedicated case worker who helped me apply for some financial support through a disability certificate, and access to some other services. I needed a new pediatrician, and she was able to recommend and even refer us. She was also able to help us learn about and get into a specialized screening for Autism.

Saturday, 26 April 2014

Day care Drama

The next spring, I met with another social worker, in my home. They were trying to connect us to therapeutic services for my daughter, and it seemed the fastest way was to put her into a daycare, where a speech-language pathologist and occupational therapist would be able to see her twice a week. Even though I was a stay at home parent, with a toddler and newly pregnant, I reluctantly agreed.

We chose a preschool/daycare that provided an educational-based play that was a 20 minute bus ride from my home. I interviewed the daycare, and took a tour, and explained my situation. She wasn't going because I needed child care, she was going because she needed services and this seemed to be the only way I could get those services for her. I didn't want her there longer than I had to put her there, and she was only going twice a week.

It was a disaster from start to finish. When she was there, she refused to cooperate with either the teachers or the therapists. She would wander the room, circling, never stopping, for hours. She wouldn't eat there -- they were supposed to give her snack. She wouldn't let them change her without screaming, and she definitely didn't want to use the toilet like they were trying to show her. I would pick her up and she would be starving, usually distraught and exhausted. She would sleep all the way back home, and then would cling to me the rest of the day. And at night, it was worse! She would wake up 4-5 times a night literally shrieking with night terrors.

I lasted all of 6 weeks. I wanted to pull her out sooner, but they convinced me to try "just a little bit longer" and see if she would settle into the routine. All I could see happening was her delays worsening. She was actually regressing. The few words she had learned were disappearing. Her screaming was getting worse. Her sleep (and mine!) were interrupted more frequently. Her appetite was disappearing, and thin already, she was in danger of losing weight. She stopped interacting with others, and I would occasionally find her in a corner curled up in a ball, just lost in her own world, rocking, stroking her teddy. I was growing downright scared.

I pulled my daughter out and spent the next few months just cuddling and trying to reassure her that she wouldn't have to leave me again. We moved shortly after that, and once we settled into our new place with lots of outdoor time, she began to blossom again.

It was time for me to stop relying on the "experts" and start taking care of things myself.

Thursday, 24 April 2014

Not raising children..

I have spent time recently pondering what exactly I am doing here. I'm a parent, a mother of many, I'm a homeschooler, I'm a housekeeper and homeowner, I am a business builder and team member, I am a child of God. I wear many hats and have many roles.

In my business, we focus on goal setting and planning. In homeschooling and housekeeping, I won't get much done without a plan and a schedule. My life has a purpose and a plan, says God's word. And in parenting.. there is a goal as well.

Parenting is defined as the raising of children. Except.. I don't know that "children" is my end goal. I'm not raising children.. at least, that's not what I want to end up with when I'm done this work of parenting. I want to raise adults. Grown women who are certain of their purpose, secure in their identity and sure in their understanding of God's plan for them.. that is my goal.

This may be purely a matter of semantics. But I recently did a study on the power of words, and really, words are more powerful than we tend to remember. Words brought the world into existence, and the Word says that the tongue has the power of life and death. So when I say I'm raising children.. I may be doing damage to my goals here.

I'm not raising children. At least, that shouldn't be where the period is in my sentence. I'm raising my children to be.. lovers of God not of man, responsible, educated adults able to make decisions and be independent and think for themselves, women of prayer and faith and grace who value choice and are strong enough to admit when they need help.

I'm not raising children. I'm raising the next generation of citizens, whose choices will shape not only the communities around them but extend the kingdom of God further, whose talents and gifts will show God's love and mercy and grace to the world, whose skills and hearts and hands will demonstrate the power of God to change the world.

God has a plan for me, and part of that plan includes these children. They may be children now, but they will not stay children. They will grow physically and mature into biologically adult members of society. It is my job to make sure that as their bodies grow, their minds and hearts also grow into maturity, that they will act the adults they will appear to be.

God has a plan for each of these children.. but it does not include them staying children. Part of my job is to train them to follow His plan for their lives, into growth and maturity, not just as physical adults but in their Christian faith as well.

I'm not raising children. I'm raising up a banner for Jesus, I'm raising world-changers, I'm raising kingdom-builders.

They may be children now, but they won't stay this way. Because I'm not raising merely children, I'm raising women warrior for God.

Tuesday, 22 April 2014

Assessing the score

I was able to get a pediatrician fairly quickly, though it was some distance away. On the day of our appointment, I lugged my 3 children, and all the documentation I had accumulated, and presented my daughter to the doctor. She read over the reports I had so far, and asked questions, while watching my daughter play in the examination room.

I say play rather loosely. What she did in fact was not really "play". She was 2, almost 3 at the time, and she has this small, orange teddy which she immediately attached to the minute she saw it and promptly christened it "Orange Teddy". She had it with her this day, and it was the object of her "play". She laid it down on the examination table, and ran to the chair. She climbed up on the chair, sat there for a few minutes and then ran back to the table and her teddy. Then she grabbed the teddy and ran to the door, back to the table and put the teddy down. Rinse repeat. She completed this cycle probably about 10 times in the 20 minutes the doctor and I were chatting, until the doctor looked at me, and asked very pointedly, "Does she do this frequently?"

Yes.  Yes she does. Yes, she gets "stuck" in her stories, in her playing, in her routines. She repeats the same things over and over and over again, ad nauseum. Until we're all sick of hearing her sing the same song, say the same sentence, play the same game.. Yes. Repetition is the mark of my daughter's play.

I replied quite casually that yes, this is very frequent.. It was, in fact, so typical of her, that I hadn't noticed there was something wrong with it. Children aren't really supposed to get "stuck" in a cycle like that.

That seemed to alarm the doctor, and actually gave my reports credibility. I wasn't an overly-concerned mother being hypersensitive. There was something different about this little girl's development, and she had seen some evidence for herself.

The first thing she did was refer us to an audiologist for testing. Then she was going to refer us to a developmental pediatrician, someone who specialized in the early development of young children. She was pleased we were already referred to the social services agency, and told me to keep her informed.

A few weeks later, we got an appointment with the audiologist. After hooking my daughter up to all sorts of machines and testing her hearing, and watching the child dance around the room like nothing was wrong at all, the audiologist gave me her report. She looked at me, and said, "Well, as far as I can tell there's nothing wrong with her hearing. However, what I can't test is whether or not her brain is listening correctly to what her ears are telling her." She gave me a book title to look up -- What to Do when the Brain Can't Hear.

I waited months for the referral to the Occupational Therapist. And heard nothing about speech therapy or any other services. But finally we were to see the OT. She did a bunch of play-testing with my daughter, and I watched curiously as she tested not only her ability to actually do things but also her ability to understand what she was doing. When it was all said and done, I asked for a copy of her final report and her notes.

The report noted deficiencies in her fine motor skills but advanced gross motor skills. It also noted difficulty in age-appropriate concepts, like drawing people, simple shapes, or stacking blocks. At 3 years of age, my daughter had the development of a 2 year old. And in some areas, a 1 yr old. It was a shocking declaration that there was something wrong with my child.

The final assessment we did that year was with the developmental pediatrician. This was a most frustrating experience. We were the last appointment of the day, except.. neither the centre nor the doctor had any record of our appointment. But he graciously saw us anyway, even though he had no referral paperwork, read none of her case file, knew nothing about us. I had learned by now to come prepared, so I gave him my copies to read over. Then he did similar activities with my daughter that the OT had done, and noted the same difficulties. He told me it looked like she had a 9-12 month gap in her abilities, possibly a bit more. And that I was doing the right thing in getting her assistance now. That in 5 -10 year from now, a 9 month gap wouldn't be noticed.

In one sense, it was immensely relieving to know that her developmental delays were not considered serious. In another sense, it was intensely frustrating to feel that after all this concern and worry and work, her delays were not serious. I almost felt that my concerns were dismissed. But.. there was still work to do, and I knew I was the best advocate for my child.