Development/growth/health thing #3
In the packet of pre-registration info from the hospital I got during Mackenzie's pregnancy, I vaguely remember checking a 'yes' box to being contacted about the county's Right Track program. It is a free program from the county that includes monthly home visits from a child development professional to check up on the development of your baby. After Mackenzie was born, they contacted me asking if I still wanted to participate. I figured why not, it was free. The gal, Sara, we had at our house was great, always easy to talk to mom-to-mom and had advice on what things we could work on or exercises/games to do/play. Shortly before Mackenzie turned 2, which was last summer, Sara noticed that Mackenzie hadn't made much progress with speech. Mackenzie would no longer be eligible for the program when she turned 2, so Sara referred us to the Infant Development program. I had no idea what this program was about, but we made the first appointment and went from there. They did a full evaluation on her development in all areas, not just speech. The day of the evaluation, I felt Mackenzie did great, that she did most all things they asked her to do, besides talk. A week later when I had the meeting to discuss the results of the evaluation, I was hit by a ton of bricks.
Very calmly and nicely, a room full of people I had just met told me my daughter was behind in all areas of development; speech, cognition, gross motor, and fine motor. I couldn't believe it. I held it together in the meeting, but completely broke down in the car and bawled all the way home. I didn't know what to do. I contemplated quitting my job suddenly to stay home and work with her, or bring her to appointments she would need with specialists to be able to catch up. I'll admit I was being rash at that point, but I didn't know how to handle what they had just told me. I felt like a bad mom because we hadn't been very concerned about her development before this. We figured she was just a late talker, so to hear that she was behind in everything was really hard to hear. I know I shouldn't have worried so much at that point becuase all the conclusions about Mackenzie's development were taken from a 2 hour eval with strangers. How would they be able to make judgements about her development from just 2 hours? And they did mention that, but there was no doubt that she was behind in speech.
After much more crying and talking with Nick and my mom, we continued life as usual but obviously had a lot more to think about as we entered a new chapter in our lives. Her evaluation results made Mackenzie eligible for the Infant Development (ID) program and we started with weekly visits by our case manager and various other child development specialists to give us ideas on how to encourage her development. All the people we have worked with have always been wonderful and I can tell they care very much about Mackenzie. They have wanted to see her make progress and I've always felt they have our best interest in mind. They always came with new techniques to try to encourage Mackenzie's speech and were very helpful in putting us in contact with other resources and opportunities we would never have known about otherwise.
The first few months of home visits I think were to primarily to get to know Mackenzie to determine what services would be best for her. It was decided that she would benefit from speech therapy, so we started seeing a speech/language pathologist twice a week. With both Nick and I working, it was going to be tough to get to those appointments, but thankfully, we found an SLP who was willing to visit Mackenzie at her daycare so as not to disrupt her daily schedule too much. We were thrilled that it could work out that way, but I also wished I could be at her visits with her. The SLP and I stayed in contact over email and she would tell me what they worked on and what we should continue at home, and for a while, it was mainly working on baby sign language to get Mackenzie to communicate her needs and wants. She picked up on it quite quickly and learned lots of words. I think it was harder for Nick and I to keep up with the signs she knew!
As we approached spring of 2011, we had to think about what was going to happen when Mackenzie turned 3 as she would no longer be eligible for the ID program. That didn't mean we were helpless, but we had meetings about our options and another big evaluation coming up. I was really nervous for this eval because while I did think she was making progress, I didn't want to be blindsided again with the results. In my eyes, she will always be my perfect little girl, so it's hard when other people tell you something is wrong. She did great on the day of the eval though and was only behind in speech. They not only used info from that particular day, but also from all the other visits and what they really knew she could do. Her motor abilities and cognition were right on for her age. Well, actually they scored her down for motor abilities because she didn't go up stairs without hanging onto the wall or railing. I thought that was BS because who wants their 2 year old (she was 2 at the time) to go up stairs without holding onto something?!?! Sorry, I've never worked with her on that, it's because I don't want her to! I want her to be safe and hold on! So, I consider her motor abilities to be just fine. Her cognition was right on though, which is what we've always known. She is a smart little bugger, but it's hard to see that unless you spend a lot of time with her because she doesn't talk. She was answering questions correctly that were scored at ages 3 and 4, so we know she understands everything, she just has trouble getting her words out.
With all our options, we decided to continue with the private speech therapy through the summer and with her speech delay, she qualified for the Preschool Special Needs program through the school district which she would start in the fall (this fall). It was nice over the summer that I could attend all her speech sessions and do the same techniques at home with her. It was over the summer that we really saw progress with her speech. While her speech delay was never diagnosed as something specific, her therapist said that with most kids like her, the speech explosion happens from ages 3 to 4, primarly in the latter half of the year. She felt that we were already seeing that explosion of words and was encouraged by that.
When school started a month ago, we decided to stop the private speech therapy as she would be seeing a speech therapist during her school days. If we feel we need to start the private speech again, we will, but for now, we will see how this goes. Mackenzie continues to say new words and attempt to say new words every day, so we are pleased with her progress. Her main difficulty is putting sounds together. We can go through the alphabet and she can say all the individual sounds, but putting them together in words is the struggle. She uses a 'g' sound for the beginning of many words. For example, 'bye-bye' is 'guy-guy'. I will have her watch my mouth and I'll say "buh, buh, bye-bye", emphasizing the 'b' sound. She will then say, "buh, buh, guy-guy". So we just have to keep working on things and when she gets it, she gets it. It just takes practice. It's funny though, because some times she really just does not want to practice and she gets all sweet, trying to distract me. The other day, we were practicing words and I was on the floor so we were face to face. She put her hands on my cheeks, got the sweetest look on her face and gave me a big kiss. I thanked her for the kiss, then tried to practice words again. With the same sweet look, she said, "I gove you" (I love you). Now I knew what she was trying to do, the little bugger, so I told her I loved her too but we needed to practice. Her next tactic was to hold my cheeks again and say, "kiss, kiss", then repeatedly kiss me all over my face. Do you think she's already learned how to be manipulative or what? :) I can't help but laugh at her.
I've spent a lot of time worrying about Mackenzie's future, scared of what's to come, scared that she will always struggle with speech/communication, worried that people will treat her differently and sad that she may face discrimination. I think up to this point, I've tried to keep everything somewhat of a secret because part of me was worried what people would think. I don't want anyone to judge her based on the fact that she's labeled as having a disability. I want everyone to see the beautiful, smart, charming little girl that I see. I don't want people to feel sorry for her and I don't want her to have limited options in the future because of all this. I always wonder if I did something during her pregnancy that caused it, but I guess I'll never know. What I do know is that God chose us to have Mackenzie and ever since the day she was born, I've always felt so blessed to be her Mommy and I've always felt like she was meant for something special. I can't describe it, but there's always been something I feel when I look at her that I know she was meant for something big. So I will do my best to help her through everything, giving her all the opportunities that I can, and teaching her to be a strong woman to go after what she wants. I don't know if she will overcome all this one day or if she will always struggle, but I will be there for her every step of the way. She will always know that we love her no matter what and that God loves her and He made her just the way it was meant to be.
I know that God is with me along this journey too. Whenever I'm feeling sad about it all, I see someone in public or I come across a news story about someone who has far greater challenges. It reminds me that we're completely blessed and things could be a lot worse. We can handle this! Mackenzie truly is one of God's masterpieces!
The first few months of home visits I think were to primarily to get to know Mackenzie to determine what services would be best for her. It was decided that she would benefit from speech therapy, so we started seeing a speech/language pathologist twice a week. With both Nick and I working, it was going to be tough to get to those appointments, but thankfully, we found an SLP who was willing to visit Mackenzie at her daycare so as not to disrupt her daily schedule too much. We were thrilled that it could work out that way, but I also wished I could be at her visits with her. The SLP and I stayed in contact over email and she would tell me what they worked on and what we should continue at home, and for a while, it was mainly working on baby sign language to get Mackenzie to communicate her needs and wants. She picked up on it quite quickly and learned lots of words. I think it was harder for Nick and I to keep up with the signs she knew!
As we approached spring of 2011, we had to think about what was going to happen when Mackenzie turned 3 as she would no longer be eligible for the ID program. That didn't mean we were helpless, but we had meetings about our options and another big evaluation coming up. I was really nervous for this eval because while I did think she was making progress, I didn't want to be blindsided again with the results. In my eyes, she will always be my perfect little girl, so it's hard when other people tell you something is wrong. She did great on the day of the eval though and was only behind in speech. They not only used info from that particular day, but also from all the other visits and what they really knew she could do. Her motor abilities and cognition were right on for her age. Well, actually they scored her down for motor abilities because she didn't go up stairs without hanging onto the wall or railing. I thought that was BS because who wants their 2 year old (she was 2 at the time) to go up stairs without holding onto something?!?! Sorry, I've never worked with her on that, it's because I don't want her to! I want her to be safe and hold on! So, I consider her motor abilities to be just fine. Her cognition was right on though, which is what we've always known. She is a smart little bugger, but it's hard to see that unless you spend a lot of time with her because she doesn't talk. She was answering questions correctly that were scored at ages 3 and 4, so we know she understands everything, she just has trouble getting her words out.
With all our options, we decided to continue with the private speech therapy through the summer and with her speech delay, she qualified for the Preschool Special Needs program through the school district which she would start in the fall (this fall). It was nice over the summer that I could attend all her speech sessions and do the same techniques at home with her. It was over the summer that we really saw progress with her speech. While her speech delay was never diagnosed as something specific, her therapist said that with most kids like her, the speech explosion happens from ages 3 to 4, primarly in the latter half of the year. She felt that we were already seeing that explosion of words and was encouraged by that.
When school started a month ago, we decided to stop the private speech therapy as she would be seeing a speech therapist during her school days. If we feel we need to start the private speech again, we will, but for now, we will see how this goes. Mackenzie continues to say new words and attempt to say new words every day, so we are pleased with her progress. Her main difficulty is putting sounds together. We can go through the alphabet and she can say all the individual sounds, but putting them together in words is the struggle. She uses a 'g' sound for the beginning of many words. For example, 'bye-bye' is 'guy-guy'. I will have her watch my mouth and I'll say "buh, buh, bye-bye", emphasizing the 'b' sound. She will then say, "buh, buh, guy-guy". So we just have to keep working on things and when she gets it, she gets it. It just takes practice. It's funny though, because some times she really just does not want to practice and she gets all sweet, trying to distract me. The other day, we were practicing words and I was on the floor so we were face to face. She put her hands on my cheeks, got the sweetest look on her face and gave me a big kiss. I thanked her for the kiss, then tried to practice words again. With the same sweet look, she said, "I gove you" (I love you). Now I knew what she was trying to do, the little bugger, so I told her I loved her too but we needed to practice. Her next tactic was to hold my cheeks again and say, "kiss, kiss", then repeatedly kiss me all over my face. Do you think she's already learned how to be manipulative or what? :) I can't help but laugh at her.
I've spent a lot of time worrying about Mackenzie's future, scared of what's to come, scared that she will always struggle with speech/communication, worried that people will treat her differently and sad that she may face discrimination. I think up to this point, I've tried to keep everything somewhat of a secret because part of me was worried what people would think. I don't want anyone to judge her based on the fact that she's labeled as having a disability. I want everyone to see the beautiful, smart, charming little girl that I see. I don't want people to feel sorry for her and I don't want her to have limited options in the future because of all this. I always wonder if I did something during her pregnancy that caused it, but I guess I'll never know. What I do know is that God chose us to have Mackenzie and ever since the day she was born, I've always felt so blessed to be her Mommy and I've always felt like she was meant for something special. I can't describe it, but there's always been something I feel when I look at her that I know she was meant for something big. So I will do my best to help her through everything, giving her all the opportunities that I can, and teaching her to be a strong woman to go after what she wants. I don't know if she will overcome all this one day or if she will always struggle, but I will be there for her every step of the way. She will always know that we love her no matter what and that God loves her and He made her just the way it was meant to be.
I know that God is with me along this journey too. Whenever I'm feeling sad about it all, I see someone in public or I come across a news story about someone who has far greater challenges. It reminds me that we're completely blessed and things could be a lot worse. We can handle this! Mackenzie truly is one of God's masterpieces!
3 comments:
Thanks for sharing Lanae.
Thanks for sharing. I am sure Kenzie will look back on these blog posts someday and truly appreciate the devotion and determination you have shown through all of this. What a lucky little girl.
I read this a while ago and meant to post right away, but didn't. I can't imagine getting blindsided with that kind of news and it makes me think about my interactions with parents - so thank you for sharing your experience. K (and R for that matter!) are so, so blessed with you as their momma. From what I know of her, she won't let anything hold her back --- God has big plans for that one! : )
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