2 years ago
As I was sitting in EK's dark room last night waiting for her to fall asleep, I realized that it's been 2 years since we received her autism diagnosis. This 2nd year went by rather quickly. I think partly because we've accepted her diagnosis more as time goes by and partly because we're in a routine that works right now. There are still some hard days, but they don't seem to happen as often as that first year. I think coming to grips with autism has different steps of grief...denial, anger, sadness, acceptance, etc. Though I wouldn't say I'm completely content with our situation (in fact, I will admit that I'd remove the autism if I had the power) , I know that my Heavenly Father's plan is good and perfect and that's what I have to trust in.
Sometimes it's good to have some quiet time to think and other times it's not so good. As I thought back to 2 years ago, I became sad. We knew something wasn't right with EK. Sensory-wise she had become out of control. She had trouble being in public. I quit taking her on errands whenever possible and going out to eat was not an option anymore. Sensory issues also caused her fine motor delay b/c she didn't like touching certain textures. I remember getting her dressed and doing her hair were such difficult tasks. Her toe walking began due to sensory issues. I would say all of EK's initial warning signs were sensory. Before this journey, I didn't understand sensory issues and how sometimes, they make it very difficult for kids to function in everyday life.
Autism was such a heavy word to hear back in February 2009, but we also were thankful to be on the early end of detecting it. She got her official diagnosis when she turned 3 and everything we read said "early intervention" was crucial. We felt good about having 2 solid years to work on catching her up. I truly thought that if we started preschool and ABA therapy (along with some other therapies) we would see significant progress. I certainly didn't think we'd see more regression once we started therapy!
In November 2009, EK stopped talking. It was a slow regression. It took us a week or so to realize it was more than just having a "quiet day". She wasn't talking anymore. She wouldn't attempt words AT ALL. Before then, she would label things or make simple requests. She also repeated a lot of what she heard, either from us or from a TV show. She sang songs. That all suddenly stopped. They noticed it at school as well. I have my own thoughts as to what may have triggered that, but nothing concrete. (I continue to read more to see if other kids have had something similar happen and if speech returned, how they got it back.)
She made some progress at school with compliance that year. Before, she would just throw the toys out of frustration. Ms. Sharla got her to work several tasks and starting using PECS (picture cards) to help EK communicate. They addressed a lot of her sensory issues to help reduce her anxiety too. It was a good year, but I still longed to hear her speak again.
This past summer (2010) EK started babbling again. What a sweet sound that was to hear!!! I really thought her speech would return soon after. Now that it's been 6 months of babbling, I don't know if her speech will return. I pray for it diligently. Sometimes I beg the Lord to allow her to talk, just so I can know if she's hurt or hungry or tired. I really don't think I need conversation. I just want to be able to meet her needs when she has them.
Her progress (based on her data at ABA therapy) has been inconsistent. She will master a new skill, but within a month, it seems like she's forgotten it. This really isn't typical among kids with autism. ABA therapy really does work for most of our kids. It's kind of frustrating to watch other kids around you mastering skill after skill when your child isn't. Her therapists have been working like crazy lately to figure out ways to motivate her and help her learn. There were several days that she had 3-4 highly trained therapists working with her. Normally, it's a one-to-one ratio. I am thankful that they have concerns on her lack of progress as well and that they are trying to do something about it.
Our next step is to do a sleep-deprived EEG to rule out seizures. I don't think she is having seizures, but there are some kids with autism that have them in their sleep. When that happens, they lose skills that were previously acquired. As much as I dread taking her to a hospital next week to try and get her to fall asleep (with no sedation at 10am), I really want to know for sure that seizures aren't an issue for her. I am to the point where I want some answers. If she is having seizures, we can try some medication. If she isn't having seizures, I'll have to do more research to see if something else could be causing her lack of progress.
I don't want to sound like she's made NO progress. At school, she has made leaps and bounds socially. She is happy and comfortable in school. It doesn't upset her when someone unexpectedly comes in to her classroom. She participates in music and PE class each day with typical kids. She sits at group time for 30-45 minutes and is engaged most of the time. Ms. Sharla is ALWAYS trying new things to see if she can get her to work more and/or find out what's going on in EK's mind. We aren't sure what all she knows. She can follow simple commands. I have no idea if she understands colors, shapes, etc. Before she lost speech, she wasn't consistent with labeling those. She tolerates hand-over-hand assistance with no protest. Since her fine motor skills are so delayed still (partly b/c of sensory and stubbornness), she can't hold a writing utensil independently and color/paint. She does more at school than she will for me in this area!
Anyway, this is becoming a very long post! As frustrated as I am at times with all of this, I know the Lord is in control and for whatever reason, He hasn't allowed for her to make major progress. I don't want people to pity us, but to pray! Pray that we'll get some answers with the EEG next week. Pray that EK will begin to make some progress (even if it's in potty training or using a fork/spoon). Pray that I will be the mother she needs me to be.
Last Sunday, we had 2 families visit our church. Each family has a child with autism. I am thankful that our church is wanting to reach out to families with special needs children. I am excited to see how the Lord works in the future b/c I know there are a lot of families that want to worship, but know that it's takes someone special to take care of their child. Not all churches are willing to take this on. Two years ago, I wouldn't be in a place to encourage these 2 moms.
Lord, thank you for guiding us this far. I pray that you'd continue to give us wisdom and discernment in the days ahead. We want to help EK! Please continue to work in her life and if it'd be your will, allow her speech to return! Above all, we want you to be honored and glorified in our lives so that others will be drawn to you. Amen!
Sometimes it's good to have some quiet time to think and other times it's not so good. As I thought back to 2 years ago, I became sad. We knew something wasn't right with EK. Sensory-wise she had become out of control. She had trouble being in public. I quit taking her on errands whenever possible and going out to eat was not an option anymore. Sensory issues also caused her fine motor delay b/c she didn't like touching certain textures. I remember getting her dressed and doing her hair were such difficult tasks. Her toe walking began due to sensory issues. I would say all of EK's initial warning signs were sensory. Before this journey, I didn't understand sensory issues and how sometimes, they make it very difficult for kids to function in everyday life.
Autism was such a heavy word to hear back in February 2009, but we also were thankful to be on the early end of detecting it. She got her official diagnosis when she turned 3 and everything we read said "early intervention" was crucial. We felt good about having 2 solid years to work on catching her up. I truly thought that if we started preschool and ABA therapy (along with some other therapies) we would see significant progress. I certainly didn't think we'd see more regression once we started therapy!
In November 2009, EK stopped talking. It was a slow regression. It took us a week or so to realize it was more than just having a "quiet day". She wasn't talking anymore. She wouldn't attempt words AT ALL. Before then, she would label things or make simple requests. She also repeated a lot of what she heard, either from us or from a TV show. She sang songs. That all suddenly stopped. They noticed it at school as well. I have my own thoughts as to what may have triggered that, but nothing concrete. (I continue to read more to see if other kids have had something similar happen and if speech returned, how they got it back.)
She made some progress at school with compliance that year. Before, she would just throw the toys out of frustration. Ms. Sharla got her to work several tasks and starting using PECS (picture cards) to help EK communicate. They addressed a lot of her sensory issues to help reduce her anxiety too. It was a good year, but I still longed to hear her speak again.
This past summer (2010) EK started babbling again. What a sweet sound that was to hear!!! I really thought her speech would return soon after. Now that it's been 6 months of babbling, I don't know if her speech will return. I pray for it diligently. Sometimes I beg the Lord to allow her to talk, just so I can know if she's hurt or hungry or tired. I really don't think I need conversation. I just want to be able to meet her needs when she has them.
Her progress (based on her data at ABA therapy) has been inconsistent. She will master a new skill, but within a month, it seems like she's forgotten it. This really isn't typical among kids with autism. ABA therapy really does work for most of our kids. It's kind of frustrating to watch other kids around you mastering skill after skill when your child isn't. Her therapists have been working like crazy lately to figure out ways to motivate her and help her learn. There were several days that she had 3-4 highly trained therapists working with her. Normally, it's a one-to-one ratio. I am thankful that they have concerns on her lack of progress as well and that they are trying to do something about it.
Our next step is to do a sleep-deprived EEG to rule out seizures. I don't think she is having seizures, but there are some kids with autism that have them in their sleep. When that happens, they lose skills that were previously acquired. As much as I dread taking her to a hospital next week to try and get her to fall asleep (with no sedation at 10am), I really want to know for sure that seizures aren't an issue for her. I am to the point where I want some answers. If she is having seizures, we can try some medication. If she isn't having seizures, I'll have to do more research to see if something else could be causing her lack of progress.
I don't want to sound like she's made NO progress. At school, she has made leaps and bounds socially. She is happy and comfortable in school. It doesn't upset her when someone unexpectedly comes in to her classroom. She participates in music and PE class each day with typical kids. She sits at group time for 30-45 minutes and is engaged most of the time. Ms. Sharla is ALWAYS trying new things to see if she can get her to work more and/or find out what's going on in EK's mind. We aren't sure what all she knows. She can follow simple commands. I have no idea if she understands colors, shapes, etc. Before she lost speech, she wasn't consistent with labeling those. She tolerates hand-over-hand assistance with no protest. Since her fine motor skills are so delayed still (partly b/c of sensory and stubbornness), she can't hold a writing utensil independently and color/paint. She does more at school than she will for me in this area!
Anyway, this is becoming a very long post! As frustrated as I am at times with all of this, I know the Lord is in control and for whatever reason, He hasn't allowed for her to make major progress. I don't want people to pity us, but to pray! Pray that we'll get some answers with the EEG next week. Pray that EK will begin to make some progress (even if it's in potty training or using a fork/spoon). Pray that I will be the mother she needs me to be.
Last Sunday, we had 2 families visit our church. Each family has a child with autism. I am thankful that our church is wanting to reach out to families with special needs children. I am excited to see how the Lord works in the future b/c I know there are a lot of families that want to worship, but know that it's takes someone special to take care of their child. Not all churches are willing to take this on. Two years ago, I wouldn't be in a place to encourage these 2 moms.
Lord, thank you for guiding us this far. I pray that you'd continue to give us wisdom and discernment in the days ahead. We want to help EK! Please continue to work in her life and if it'd be your will, allow her speech to return! Above all, we want you to be honored and glorified in our lives so that others will be drawn to you. Amen!
Praying for EK, you, your family, and your baby - congrats!
ReplyDeleteMelissa- you are an amazingly strong person and an amazing mom. My nephew has autism as well and your post was so inspiring. He's 10 now and although it is easier than when he got diagnosed at 3 it was so hard for my sister. One of the hardest things was taking him to church, you would think it would be the place where she could get some respite but instead she got copies of "the Strong Willed Child" and phone calls from the pastor discussing how disobedient her son was. The fact that you are welcoming these parents and letting them know that they can find rest (in more ways than one) in your church is amazing. God is using you and EK to meet the needs of His people. I will be praying for you- especially with the EKG next week please keep us posted with what happens! oh and congrats on the baby!
ReplyDeleteWe love you guys and thank God for glorifying Himself through you and this hard providence. He is good all the time. I pray that God will miraculously heal your little girl, if it be His will, and, if not, that He'll continue to give you grace and strength to love Him in the midst of it all.
ReplyDeletePraying you through the sleep test and results.
ReplyDelete