This past week Jason, my mother and I met with Springfield Public Schools ECSE to go over all of Cruz's evaluations. He had 5 separate tests that were administered on different days. The special education preschool is about 25 minutes from my house. The school itself is a diamond in the rough. It is in a not so great location but it's bright and colorful, shiny and new, and full of hope. We all sat down around a conference table and the first thing out of his caseworkers mouth was, "Cruz is very bright, very very bright." We all sighed relief. During our two hour meeting we discussed the results of each one of his tests. Fortunately, each one of his testing results seemed accurate and consistent with how he is majority of the time. Cognitively we scored average and seemed to actually score above average on visual reception, memory, and block building design. His extreme difficulty with expressive language brought his overall score down. Their findings were concurrent with the diagnosis of Apraxia, SPD, and social/emotional delays. So, Cruz is being admitted full time to morning preschool. The school bus will pick him up and bring him back home. We got to tour the facility and meet his teacher. There will be no more than 6 kids in his class with one teacher and two aids. In addition, he will also receive 90 minutes of specialized speech therapy every week and 30 minutes of occupational therapy every week. We are so excited for him. I know he is going to have a blast. I've been very emotional this past week watching the progression. Nine months ago this little guy could only say mama, dada, and no. He couldn't produce the 'e', 'o', 'y', 'i' sounds or majority of the consonants. He wouldn't hold eye contact, he wasn't happy, he had screaming fits for hours on end. He would run his head into the floor. Now, my son is a different child. I know God has been answering our prayers and I am so thankful for the medication we finally put him on. It has made a world of a difference. We really hesitated and procrastinated on using any kind of medication. After exhausting all other efforts we agreed to try them. He is so much happier now. He is starting to sleep better. He still wakes up during the night but he goes to bed earlier than midnight, usually around nine. He hasn't had any of his major screaming fits since he started the medication. Everyone that is around him is amazed at how he is suddenly friendlier, more engaging, and pleasant. Today his speech therapist came, who we love and will be devastated to have to part ways with in a few weeks. Cruz has been asking for her all week. She told us that he has one of the most severe cases of Apraxia that she's ever seen. But, and there is always a but.... he is making major improvements. This kid is going to have an amazing story. Sitting here now on the computer, I can hear him in the backyard with Franklin just singing his little heart out. The other night I was putting him to bed and I just laid there next to him in the dark looking up at the stars on his cieling. I ran my fingers through his thick hair and realized how big he is getting. Tears filled my eyes as I realized only a few months ago I was pulling my hair out at the bottom of the barrel not sure how to get through each hour with him. Here in the still quiet of the night snuggled up with his favorite blankets I thanked God for the tremendous progress and growth he has accomplished. I know God is going to continue to do amazing things with Cruz and I am so humbled.
Monday, October 17, 2011
To some the very idea of slapping a label on someone or something makes them instantly defensive. We've been so trained to think outside of the box, not to let anyone or anything define you, break the mold, not to conform... Everyone strives to be an individual, something different, special, unique. I think our generation has done a really good job of learning to celebrate diversity, learn from other people's differences, and accept individuals for who they really are. There are some people, like me, however that placing a label on something actually feels good. If it wasn't for labels we would have never known how dangerous cigarettes really are. If it wasn't for labels we wouldn't know what is in the processed food we are eating. If it wasn't for labels we wouldn't know much about medicine, expirations, care instructions, and so on. So much of my life I have struggled with multiple physical health issues. Doctor after doctor, each would tell me that they were not sure what the problem was. There was no real 'medical' explanation for the terrible stomach aches. People would tell me, it's just in your head, its just stress. I would tell them about the terrible pain that I was in and since it didn't seem to fit certain criteria they all made me feel like I was crazy. Now that I have been going to my naturopathic doctor, who is life changing, I am learning so much. After running some testes, he told me in the history of his career he has never had anyone test as highly sensitive to gluten as me. I am so sensitive in fact that the test quit testing me. Looking back it makes so much sense. It wasn't all in my head, it wasn't all because of stress. I was actually allergic to something that I was eating everyday. That's when a lot of things began to make sense for me. Now with getting a label of Fibromyalgia I have the same peace. It really wasn't any surprise. I have had these issues for years and have been unsure of what was causing me so much pain. I don't feel bound by a label. I feel freed. To me the label helps me process not only what has transpired, but gives me direction for my life. It doesn't change the way that my body feels, it has always felt that way. It gives me peace of mind to know that for so long it wasn't all just in my head. So many people have asked me how it felt when Cruz got 'labeled' and I have addressed it in some early posts. For the two years prior to diagnosis I thought there was something wrong with me. I thought I wasn't breastfeeding right, didn't choose the right foods or bottle for him, I must not have sleep trained him right, etc. When his second birthday hit and his behavior got worse and he still could only say mama and that was it, I knew I needed to get him evaluated but I still wasn't sure if I had missed some steps along the way. For two years I have been given all of the advice you can possibly imagine from everyone you can imagine. Some of it was helpful, some of it was hurtful. "If you would just spend more time reading books" or "If you would just spend more time singing songs" or "If you would follow this schedule..." The list goes on and on. I beat myself up for two years thinking I was not a good mom because I couldn't get my kid to smile, I couldn't get him to eat, I couldn't get him to do tummy time." If you'd just lay down some guidelines...." Trust me, guidelines were layed down. I really struggled with trying to understand why he seemed so delayed in certain areas. Then the diagnosis came. It is a weird feeling when you get news that is 'bad' news but you know its coming. The month prior to his actual evaluation the pressure built up like steam in a kettle. At this point I figured something was wrong but I didn't know what it was. Once the labels came, I wavered between feeling upset and feeling relieved. I know that probably sounds crazy. After two years of thinking I had been doing everything wrong, I realized for the first time that it wasn't because of my mistakes as a mother. It wasn't just because I hadn't gotten the right puzzles or books to look at. Bless his little heart he was just made special in such a way that we were going to have to do things a little different. I am okay with different. Different doesn't bother me, it doesn't scare me. The labels don't scare me. The labels gave me a guide, like a road map. So instead of taking the highway where a majority of the kids travel pretty quickly with minimal lane changes and a steady pace, we are going to go off the path. Our trail is a little bumpy, curvy, not well lit. Similar to a Baja 300 Off-Road Race. You never know what is going to be around each corner. But there are others that are on this same terrain and those that have walked this trail before us that help us along the way. We are grateful for family and friends who serve as our pit crew along the way. Providing us with prayer and encouragement. My roadmap is different from yours, but we will end up getting to the same place. It may take us a little longer, we may have some major meltdowns along the way, but in time we will get there. Our label gave us a roadmap. Without it, we might still be standing at the starting line not sure of which direction to go. So, no, I am not upset about the labeling of autism, or apraxia, or fibromyalgia. My question is simply, what's the next step. For each day that we walk what is the next step that we take. If all of the roadmaps available for life were rolled up and we each got to pick one from a big barrel, we wouldn't choose for our children to take a harder trail. However, I am so glad that we got the right roadmap for us. And we wouldn't have known which one was right without a label. Misdiagnosis and wrong labeling can be devastating. But once you have the right label, the right roadmap, your journey becomes much smoother. You begin to meet other travelers along the way with similar stories, similar journeys... there are some up ahead that are able to yell back "watch out for that step, keep going you are almost there..." And there are others just starting that we are able to reach out to and offer encouragement for their journey. Imagine arriving in a remote uncivilized foreign land and realizing that your map and your translation guide are for the wrong location. It would be incredibly frustrating. If someone could help and simply offer you the correct map and guide you would feel so relieved. That is where we are with the labels. Our five point harnesses are strapped tight and we are thankful for the added direction.
Wednesday, October 12, 2011
I remember those first 4 months of motherhood and thinking, if I can just get through these four months of sleep deprivation, it's going to get so much better. Well, some things have gotten better and other things have gotten worse but I have still struggled with that mindset. 'If he'd just take a nap I could get things done', 'If I can just get to 6:30 Jason will be home and I'll have an extra set of hands'. 'If he'd just sleep through the night' 'If we can just get through this week and get to the weekend.' 'If we can just get through this aggressive phase' 'If we can just get through this teething phase' 'If we can just get through....' It's really easy to fill in the blank. It happens on a daily basis. But I don't want to live my life wishing for what's ahead and just 'getting through'. I don't want to live for the future to get there and realized I missed out on so many things along the way. That's not the way God intended it. I realized this truth about 6 months ago and I have been really trying to make an effort to find things each day to look forward to instead of looking at the negative things I want to get past. I am a dreamer by nature, a restless spirit. I am always dreaming of new adventures and idealizing my plans and dreams. If Jason had a dime for each time I've said, 'let's just up and move to an island, or let's just buy a farm and live off of the land, or let's just move to the beach' we'd probably have enough money to actually do it. If your strength is also your weakness then my positive dreaming would turn into restlessness. Its not that my mindset is negative all the time but I do find myself looking forward to too many things. In July I am already looking forward to Christmas, by Christmas I can't wait for spring. I finally started putting things on the calendar to look forward to each week and trying to plan things in the middle of the week instead of the weekend to re-program my mind. It was working really well for me. I find myself now in sleep deprivation starting to pull back this old mindset... 'if we can just get the sleep issue figured out...' A friend posted on facebook this week the statement "God doesn't always give us what we want, but he always gives us what we need." Coming from another special needs mom, it was a refreshing reminder. What I want is to solve the sleep issue and get a really good solid nights sleep. However, if we are going to take the long way through this, then I have to lean on the truth that God has already given me what I need to make it through each day. I may want more sleep, but technically we've been functioning this way for quite awhile. I don't know how we always get through, but we do. Some days we do better than others. I have to try to be present in the moment and find things to enjoy each day. Some days are easier than others. I have to hold on to those moments and remind myself to be present. Its the little things, like seeing the kids sharing, learning a new sound or word, watching the kids grow and develop... Although he is still very much behind he has grown by leaps and bounds over the last two months. Really the last two weeks especially. Even though the sounds are not accurate he is trying to put two words together, for the first time. He is incorporating more sounds than before, using vocabulary while he is signing. He is more approachable with people and is building relationships. He asks for his speech therapist, Holly, every single day. When we say our prayers at night we say 'God bless... ' and let him fill in the names, he always includes mom and dad, grandparents, cousins Henley, Rogan, and Rivi, uncle Matt, and his therapists Holly and Beth. To the layperson you wouldn't recognize half of the names that he says but we know who he is talking about. I have to treasure some of our tender moments together. So that is my goal for this week. (I have to set short term goals to actually accomplish them) My prayer is that I would enjoy my children, that we would have fun together, and there would be joy and peace in the home.
Monday, October 3, 2011
There are some lessons in life that you don't truly understand or learn until you are a parent. Such as the high value of a good nights sleep. It really is better to go to bed early and get a good night sleep. 'Nothing good happens after midnight', 'Sleep it off, you'll feel better in the morning'... There is a reason that sleep deprivation is used as a form of human punishment and torture. I would literally give everything I own to solve the sleep issues in our house and get a good night's sleep. In three years I would guess that we've all actually slept through the night only a handful of times. Cruz averages 5-6 hours a night, often with no daytime nap. After a year of trying to understand what he wanted, we learned that he wants to sleep in the hallway on the hardwood floor upside down in a corner with his head on the hard floor and bottom up in the air. The other night he even folded back the rug on the floor so that he was only touching the wood. That's what he wants, but I can't leave my 29 lb almost 3 year old in the hallway when I go to bed. So, Jason takes him back to his room and lays him down after he falls asleep in the hallway. (mind you this is after a few hours of trying to get him to just lay down, or just stay in his room) I think he is going to be a sniper because he has mastered the ability to sneak out of his room and crawl down the dark hallway and somehow sneak up right behind me. The really creepy part is that he doesn't say anything and he just stares at me. Sometimes I can just see the whites of his eyes approaching. I used to jump when I saw him but now I am getting used to it, even though it is still very creepy. Once he finally does fall asleep in the hall he will stay asleep for awhile but is up again in a few hours. We've tried everything. Well, I should say we've tried everything that has been suggested. Weighted blanket, mat on the floor, nightlight, sound machine, massage, warm bath, natural supplements, protein, melatonin, the list goes on... We've not yet found the right solution for Cruz. If anyone has any other suggestions or ideas, please please let us know. We have finally put a crib mattress on our floor and put him to bed in the same room as us. He tends to fall asleep easier but is still up in the middle of the night. He always comes to mommy when he gets up during the night. So, last night we tried to trick him. Jason and I switched sides. He woke up and stood in front of Jason for a little bit, confused, and then finally walked around to the other side to get me. In our ongoing lack of sleep, I have realized a truth about myself that I always suspected. I am one of those people that needs quality sleep at night. I don't do well with naps. I need good long night time uninterrupted sleep. Some people, like Jason, can get only 5 hours and still have a great day. Still be cheerful, perky, never complain. I think he trained his body this way in the military because I am convinced it isn't natural. In all honesty, Jason would never complain or tell me even if he was really tired anyways. However, this mama needs 8 hours of sleep or I tend to be a 'little' cranky and a 'little' tense. I have also learned that it is much easier to deal with screaming fits and catching kicks to the ribs and an elbow to the eye after having a good night's sleep. Its easier to try to be patient with whining and quick to show compassion when my own body feels rested and ready to go. It's definitely easier to do that extra load of laundry and make a nice dinner when I can actually get up off the floor after playing with the kids. Somehow its easier to try to understand the grunting and mumbling when I feel rested. So, really it is in everyone's best interest for us all to get a good night's sleep. Everyday we face different challenges but this sleep issue is a constant and has been a constant since the day he was born. Looking back now it is easier to understand why he screamed and cried so much as a baby. He was dealing with all kinds of sensory things even back then. Three years later its still the same issues and unfortunately he still can't tell me what exactly is bothering him. So, we play a giant guessing game. I sometimes lay there in bed and try to go over and over our routine trying to figure out where we can make changes. I try to evaluate what he had too much of, or not enough of, or try to think of something new we've never thought of... So, I'm opening up the invitation for any suggestions that any of you may have. If you think to pray for us this week, please pray for sleep, for everyone! Thank you!