(WARNING...this is LONG!)
No one ever said it would be easy, but no one ever tells you just how difficult it is to be a parent. I guess if we knew ahead of time just how difficult it is, no one would ever have kids. We've had our share of parenting struggles over the last eight years, especially since we have four kids. Our biggest parenting struggles have been with our oldest, Amelia. This is a very difficult thing for me to talk about and therefore not many people know what I'm about to write about. This is probably the deepest blog post I've ever written. After all, our blog is called "Our Tales of Parenthood", so it is a place to share all of our triumphs, joys and even the difficult part about parenting. This is a very private thing for me and I feel like unless you've walked in our shoes, people may not understand what we're going through, so for me, it's easier to keep it to myself. So to my close friends, I apologize in advance for not sharing this with you. It's been a difficult thing for me to swallow, therefore it's been tough for me to talk about it.
I'll start from the beginning. Amelia was late at hitting her milestones, and late is just a relative term. We thought it was all completely normal, since she was our first born, we didn't know what to expect and our doctor never seemed concerned when we mentioned it to him. She didn't start crawling until almost a year, didn't walk until she was 18 months, wasn't really talking a whole lot until she was about 2-1/2 and even at that, unless you were with her all the time, most people didn't understand what she was saying. We did her preschool screening in Montgomery, at that time she was going to preschool at the Catholic school and that's where we had planned to send her to school, so technically we didn't have to do the screening. The screening went terrible. Amelia had high anxiety and difficulties separating between the ages 3-6.
When they do screenings in Montgomery, at least at that time, they had several people doing the screenings all at once, all in the same room and they made parents wait in the hallway while they did the screening. After they complete the screening, they bring the parent in to go over the results. I was shocked by what they told me. Everything that I thought she could do, suddenly she wasn't able to do and they wanted to further evaluate her. I called Kevin as soon as I got in my car, Amelia and I were going to spend the day together and shop since I had taken off work to take her to the screening, I bawled my eyes out telling him what I had just heard. Then I called my mom to fill her in on what I had just been told and cried some more, feeling like a failure as a parent. After I called my mom, I called my mother in law and cried even more. They all of course reassured me that everything was going to be okay. A couple weeks after screening, we had Amelia's preschool conferences, we expressed the school's concern with her screening to Amelia's preschool teacher. Amelia's preschool teacher felt that Amelia was on track like all of the other 4 year olds in the class and didn't have any concerns. She didn't feel the need for us to further evaluate. Later on in that year we had made the decision that we weren't going to send Amelia to the Catholic school, that we were going to open enroll to a different district than the one we're assigned.
Our city is split into two school districts and there is no real rhyme or reason as to how it's split, because it zig-zags through town. That's not really relevant to the story, other than the fact that we decided to do the screening at the new district, to see what they had to say. Their screening is done differently, and by differently I mean the parents are with the child during the screening, you sit back and watch, you're not waiting in a hallway while they put your child through a battery of tests. I'm by no means a helicopter parent, but it's nice to see what's going on.While she struggled a bit with a few things on the screening, they didn't feel like she was in a dire need of extra testing and said that likely she'd need help with her speech when she started kindergarten, which we knew already.
As many of you know, we held Amelia back and she did kindergarten twice. I blogged about it
here. A quick recap, Amelia started kindergarten in September 2010. The day after she started kindergarten Stella was born and I had quit my job about 3 weeks before school started. The school year seemed to be off to a good start, best we could tell anyway. About 2 weeks to a month into the school year, we got a letter home from her teacher stating that they recommend that she be placed in Title One for extra help. At first both Kevin and I were very taken back by this, but we decided to go ahead and sign off on it. By November of that year, she was really struggling with things at school, they did some evaluations and recommended that she have an IEP (
Individualized Education Program). By December 1st of 2010 Amelia started special education and speech therapy. Boy that was a difficult thing to swallow and I struggled with it so much that I didn't want anyone to know that my child was in special ed. People judge and I didn't want to be judged on my parenting skills or other wise. It was just easier to keep it between Kevin and our parents. Even telling our parents was a difficult thing for me. Mommy guilt kicks in (yes, there is such a thing!) and I started looking back, trying to recall every little detail of my pregnancy, my labor and delivery and every little thing that had happened in Amelia's short life. Trying to figure out what I did wrong, what caused my beautiful daughter to struggle so. Eight years later, I still struggle with this. In February of 2011, Kevin had dropped Amelia off at school one day and was approached by her teacher, her teacher gave Kevin the heads up that she would be recommending that Amelia repeat kindergarten. She didn't want it to come as a shock to us when we went to conferences and she wanted to give us time to think about it prior to conferences so we could make our decision.
I think conferences were in March that year, we talked about our options, the pros and cons of holding Amelia back, we also talked to a good friend of ours who is a kindergarten teacher and she was a great support, providing words of wisdom and helped to assure us that we were making the right decision to have Amelia repeat kindergarten. I'm thankful that she was there to provide her insight at a difficult decision making time. A couple weeks after conferences we had Amelia's IEP meeting to discuss the plan for the remainder of that school year and the following school year, at that time they recommended we try physical therapy at school to help work on her hand eye coordination as well as her core strength and her muscle tone. They also Amelia do some testing with her physical education teacher to determine what her needs would be. Please forgive me, mom brain is in full force these days and I can't remember all of the details as far as timing and what kind of testing it was. The school recommended that we have Amelia do summer school to help keep her from regressing and to help retain the skills she had already learned, we knew immediately that this was an important thing to do.
In the fall of 2011, Amelia started kindergarten for the 2nd time, this time with a different teacher (her teacher the year before retired at the end of the school year), her teacher for 2nd year of kindergarten is absolutely wonderful. She is great with the kids and keeps a well managed classroom. She is Paul's teacher this year and we've been very impressed with her. When we had Amelia's IEP meeting in the fall of 2011 we went over all of the services she'd be receiving that year. We added PT and occupational therapy in addition to the speech therapy and special education services she was already receiving. I'm so happy we have a school district that is so proactive and supportive. Amelia made great strides during her second year of kindergarten, more so than her first year of kindergarten. Which, by the way, in the beginning of her first year of kindergarten, Kevin and I chalked her struggles up to all the life changes at home (new baby, mom now staying home full-time and starting school.) Can we say denial?!
The school year progressed along nicely and it was early February 2012 that I got a phone call from her special education teacher, she had great concerns with Amelia's ability to focus and stay on track. We also knew she'd be aging out of her developmental delay label when she turned seven. We decided to make an appointment with our doctor for her well-child check and to voice our concerns, as well as the schools concerns. We found out at her appointment that she was having a difficult time seeing, so our doctor recommended that we get her into the eye doctor and he thought that, that would fix a lot of the issues we were having. We filled him in on the concerns the school was having, as well as the fact that we held her back and were having her repeat kindergarten, he referred us to Fraser Center for further testing. We went to the eye doctor about a week after her appointment with Dr. Mark and then she got glasses within a week or so. Turns out Fraser has a long waiting period to get into them. We were able to get an appointment in April, they actually do two appointments, one for the evaluation and one for the follow up where they go over the results and recommendations with the parents. Prior to our visit to Fraser, Amelia had her testing at school to update her IEP and thankfully we were able to take all of that with us to Fraser and help save a little money, as they didn't have to do as much testing, because the school covered the bulk of it. We really didn't learn more than what we already knew. Basically they told us that she was delayed about a year and a half, instead of functioning at the 7 year old level, she was at that of a 5-1/2 year old and that she'd never grow out of it, she'd be delayed for the rest of her life. That? Was very difficult to swallow, especially because they couldn't offer any insight as to why she was delayed. With all of their testing they did determine that she didn't have ADHD, which was one of the initial reasons for the visits because of the concerns from school. So, in my opinion, Fraser was a big fat waste of money. They charged us a little over $1,000 to find out what the school had already determined, which of course our medical insurance didn't pick up any of it because it was a "psychological" examination, nor did it count towards our deductible. The only good thing that came out of Fraser was the fact that the school could back their plan for Amelia's IEP and she'd be able to continue to receive the services she needed, even though she had essentially aged out when she turned seven. She finished out the school year and was going onto first grade. Yippee! She did summer school again last summer, which is VERY, VERY valuable, in my mind anyway.
First grade was off to a good start. Amelia still receives services for PT, OT, speech and special education. She's making great progress with her speech, she's reading this year, along with spelling and working on math. She still isn't quite where she should be, but she's making progress, which is important to us. She may never be a 4.0 student and we're a-okay with that. She tries her hardest and she's the most kind hearted child you will ever meet. A few weeks ago I got a call from Amelia's special education teachers, she keeps us updated on a regular basis with the progress Amelia is making, so it's not unusual for her to call or e-mail me. She expressed greater concern with Amelia having a difficult time focusing, she's becoming more and more distracted as time goes on and her teacher is having a difficult time drawing her back in when she gets off task. She recommended that we revisit the attention deficit issues. I immediately called and got an appointment with our doctor for Amelia's 8 year old well-child check up. We had tried the glasses, we went to Fraser and she was getting pretty much every service possible at school, but things still aren't progressing to the full extent, so we knew we had to do something more.
Both Kevin and I went to her appointment last Friday, April 26, we had a great conversation with our doctor about our concerns and about the school's concerns. At first he was recommending that we try a medication for a month and see how she did with it and to see if it helped improve her concentration. Then we told him about our concerns with her sleep patterns, she doesn't always seem to get a good nights rest when she goes to bed, some days she wakes up and she is spot on, the other days she walks around like a zombie. Unfortunately it's a lot of the latter. He asked us a few more questions and then checked her reflexes, in both her knees and her arms. She had none. Nothing at all. You could see the concern on his face at this point, he sat back down and suggested we see a pediatric neurologist for further testing to see if we can narrow down what is going on with Amelia. We left the appointment with a prescription for Concerta, which is a common drug for kids with ADD/ADHD. She is now one of "those kids", as some would people say. She is our kid and we love her unconditionally. At this point in the game, we will do anything possible to help our daughter to be as normal as possible and to get to the bottom of whatever it is that is caused/causing her delay. She hasn't been diagnosed with ADD or ADHD, but we're trying the medication for a month to see if it makes a difference. We are also seeing the pediatric neurologist on June 11th. We just hope and pray that we can get some answers. Our medical clinic will be sending all of my pregnancy/labor and delivery records and all of Amelia's records to the neurologist and I hope we're able to finally get the answers we've been looking for.
It is so difficult to watch your kid struggle day in and day out. Thankfully, she doesn't realize that she's not at the skill level of what her peers are at. Occasionally she does get picked on at school and even got called stupid on the school bus. When she does get picked on at school, she is devastated. It breaks my heart to see her hurt. No one likes to get picked on. Kids these days are mean and it starts younger and younger. Thankfully she does have some great friends and classmates at school.
Please pray for us or keep us in your thoughts as we embark on this next step of our journey.
If you made it this far, thank you for reading our story!
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