Special needs or not?
TLE’s recent progress assessment meeting brought up some thoughts I’ve been having since she entered the center based program. Most days, I do my best to avoid labeling TLE. I keep my head down and think about what she needs in an individual sense. I do my best to not think about what kids her age “should” be doing and instead concentrate on what she is doing right now. For the most part, this works. The fact that I’ve never been around small children and have no idea what to expect sorts of helps. (Does this count as willful ignorance?)
For a month or so after her initial assessment with the county, I found myself in a terrible funk and riddled with guilt. Why is she speech delayed? What did I not do? Did I not stimulate her enough? Did I not play with her enough? I blamed myself for her delays. I cried thinking that I’m a horrible mother than didn’t do enough. I cursed myself. I thought I worried that maybe we could have caught her delays earlier, gotten her help earlier. But I realized something important: she’s developing at her own pace. Being able to accept that has allowed me to move beyond wanting to find a reason why. Now I just want to concentrate on finding ways to help her. That’s where the “special needs” label comes in.
I’ve always been torn on the “special needs” label. I always considered her “high needs” but for some reason, the idea of her being “special needs” has been very hard for me to accept. The fact is that she is developmentally delayed and attends a special needs nursery school. These realities have been very hard for me to deal with.
On days that I’m faced with the reality of her delays, I find myself mulling over what she “should” be doing despite trying not to. On these days, I spend every waking hour that’s not spent attending to TLE is spent poring over literature or researching information about speech delays , sensory issues and how to help her. I look for activities that will address her speech and sensory issues. I keep journals and notes of her progress, writing down what she is doing at home and sharing it with her teachers and therapists. It is on days like this that I think about the “special needs” label and consider that it may be appropriate.
Yet when I see TLE’s classmates and the variety of challenges that their families have to contend with, I feel like I have no right to feel as out of sorts as I do. TLE’s classmates all struggle with challenges ranging from autism to cerebral palsy. Each of these children and their families struggle with a totally different set of challenges, all far more complex and with longer reaching ramifications on their entire family’s lives. I remind myself that speech delays are by far the most common developmental delay and that TLE will likely outgrow this delay in due time. Most of her classmates and their families will continue to face their challenges, head on, for their entire lives. I can’t help but admire their families for being strong in the face of their challenges.
I also can’t help but feel a bit of a whining maggot myself for worrying about our own.
A lot of times, I feel like I’m in no man’s land. On one hand, there’s plenty of support for families with special needs children. TLE’s school provides the parents with local special needs resources, generally tailored for families coping with serious challenges like autism or Down’s. I am also part of a local special needs mailing list which is very friendly and full of warm, supporting people. Yet reading about the daily challenges all the families deal with makes me feel like I’m feeling stressed for nothing. THEIR families deal with so much more; what am I complaining about?
At the same time, I know that I deal with far more than most typical parents do. My day… no, my life… is really centered around her and providing for her needs. TLE is a whirlwind of activity and can be volatile. It used to be that just about anything could set her off, from an unexpected change in activity to an item being given to her in the wrong way. (I am so very grateful that her inconsolable tantrums have improved to the point that they’re no longer lasting hours!!) I spend a good chunk of time researching ways to help her with her speech delay, learning what I can about sensory integration dysfunction and being proactive about her sensory diet. And I have to do all this while reminding myself not to be a helicopter parent, to set realistic limits and expectations and remind myself, above all else, that she’s far, far more than just the delays. That she’s a loving, vivacious child that depends on me to guide her lovingly.
Read MoreProgress Report: Months 3 and 4
TLE feeding her baby
I didn’t get much of a chance to write about The Little Empress and her school so now that I’ve got a moment, I figure I may as well talk about that. During her third month of school, I had a few meetings with her teachers and program coordinators to discuss her developmental goals. It seems that she will be in the program until she ages out at 3 years old which is fine by me since she is making so much progress. She also had a home visit that went horribly. TLE is notoriously bad with transitions and the arrival of her teachers (who belong IN SCHOOL in her toddler world) showing up on her doorstep, was too much for her to take. She melted down into a tantrum that lasted over an hour. The upside was that her therapist and teacher got to witness first hand the behavior issues I’d talked about during her evaluation. They took some notes and talked to her OT. Later, her OT and I had a meeting of our own and developed a sensory diet for TLE which, so far, has helped a lot. She still has melt downs but the severity has decreased as has the length of her tantrums. (THANK GOD!! One hour tantrums nearly every day are not for the faint of heart.)
She had a mini-language explosion around the end of June and beginning of July. She went from having only a few sounds to suddenly she began mimicking words on a frequent basis — it surprised us as well as her teachers! The mini-explosion has continued through till August. She seems to be adding new words to her vocabulary every day. I don’t think she has more than 100 yet but she’s getting there! She’s begun to show that she likes animals, a lot. She seems to especially love monkeys! She still can’t say the word “monkey” but she’ll make the sign for “monkey” and make monkey sounds.
Two absolutely huge things that she’s done lately: Within the last month, she actually said her name!!! She won’t say it all the time if you ask her, “What’s your name?” but she has been able to say it once or twice when asked. AWESOME!!! Within the last week, she’s been using the word “me” and “mine”, something she hasn’t done before. I”m so happy that her language is improving so much! The upside is that now that she has more of a vocabulary, she seems to be far less irritable and less easily frustrated since we can better understand her.
I think one of the craziest things about her speech issues is the fact that she seems like she’s trying to say sentences. I’ve heard her say four word sentences like “Where did it go?” but this is rare. It is almost like she wants to run before she can walk. Another funny thing is that she doesn’t have a word for “yes”. She has plenty of ways to say “no” but “yes” is not a word she says. Her nod is absolutely adorable, though. Instead of just nodding her head, she has this funny tendency to nod with her whole body. It is pretty adorable.
Socially, she’s a little butterfly. She is the class hugger as she seems to like to hug just about everyone. She still especially loves her friend Mauricio — and will occasionally ask about him at home saying, “Muh-muh-muh” with this adorable little half smile — and loves to hug her teachers, too. I was a bit worried when she first started school as she had seemed aloof and disinterested in other kids her age when I’d taken her to playgroups but it doesn’t seem like she’s this way with her classmates at all.
At home, she’s started to do a lot more pretend play with her dolls and toys in the last month or so. In the photo above, she’s playing with her baby doll. She happily rocked, nursed and cuddled her “baby” and even put her in her booster seat so she could feed her while she was eating her dinner! She never did this before so I was pretty amazed to see how loving she was to her little “baby”. She also seems to love Pixar movies. She loves all animated movies but Pixar’s Up and Monsters Inc. seem to be her favorites right now and she will constantly ask to watch these two movies over. and over. and over again. She likes pointing out the characters and telling me if they’re “happy” or “sad”. Sometimes, when she’s watching a TV show, she’ll turn to me and say, “Help, help!” if the character on screen seems like they need help or are sad. She gets very into her shows now!!
Of course, she’s on vacation for most of the month of August. Yikes! Nearly three weeks of her at home every day… I almost don’t know what to do! Luckily, the OT and the OT intern at school provided the families with lots of fun activity ideas. I hope I can keep up with her!
Read MoreProgress Report: 1+ month
When I picked up The Little Empress from school on last Friday, her teacher was thrilled to report that she was a very good talker that day. She’s signing a lot more at school and verbalized “peas?” (please) and “hep” (help) when she needed help doing something. She’s doing a lot of mimicking, repeating sounds that other people are saying as well as mimicking animal sounds like a horse’s neigh.
This is so big. For the past few weeks, there hasn’t been too much that has changed aside from more babble sounds but now that she’s starting to add words to her vocabulary, I am getting so excited! She’s responding so well to her school and she loves her classmates and teachers. I’ve noticed now that she’s trying to speak more at home too which is great. She may come to us babbling but if we remind her, “Use your words, say ‘please’” rather than letting us tug on her, she’ll usually oblige with the cutest “pease?” you could ever imagine. She now regularly says “up” in addition to her sign for it (standing with her arms above her head) which we have been trying to encourage for close to a year now.
While she’s still pretty hyperactive, she’s not so quick with the tantrums. She will try to use her words more often than not though she may not always be able to get her point across. I’ve noticed that she’s starting to sing as well as dance. She doesn’t really have actual words to her singing, of course, but she does babble in melody and has an amazing sense of rhythm. I’m so excited to see all these developmental improvements! All right!!
Read MoreProgress and doubt
Today marks marks hump day of The Little Empress’ third week of school. After going to school for just over two weeks now, TLE is showing some great progress. She’s signing a lot more and vocalizing more sounds. Her teachers give me an update every day on her progress. On Monday, they reported that TLE was now signing her versions of “more” and “all done” when eating. Today, they told me that she’s imitating a lot more, gaining sounds and using words like “boat”.
For some, a 25mo saying random things like “boat” may not seem like that much of an accomplishment but after nearly a year of waiting with bated breath for actual words rather than babble, I am absolutely over the moon. (“Moon” is also another one of TLE’s new words, one that she crowed delightedly with my parents while they were in the backyard over the weekend as TLE gleefully pointed up at the “moooooooooon”!!)
To the best of my knowledge, she’ll be in her current school for at least 6 months at which time she’ll be re-evaluated for eligibility. Her particular school requires a 33% or more delay in two or more areas meaning at 30 months old, she would be developmentally equivalent to a 20mo old in order to remain her class. It is a eligibility requirement that I rather she not meet — meaning I’d rather that she was closer to her biological age — though I think she will be sad not to attend school any longer. The Hubs isn’t sure she’ll be meeting that criteria in 6 months but given the progress we’ve seen in not even three weeks, I think it is quite possible she’ll meet the 20 month developmental cut off though she may not be where she should be in biological age.
She’s making such great progress at school that I have began to give some serious thought about what comes next. My initial plan was not to return to full-time work until TLE was in kindergarten. Now, I’m not so sure. She’s doing so well in a group setting that I’m beginning to doubt that being a stay at home mom is really the best for her. After all, I’ve been home for two years and I have a child who is nearly a whole year behind in speaking.
I feel like a failure as a stay at home mom. There. I admitted it out loud. I feel like I’ve failed my daughter and that the best thing to do is to put her in a daycare setting where she can thrive and learn with other little kids while I do something more productive than ruin my child. It is discouraging that as a writer, my words help put food in my child’s mouth yet I cannot find the right ways to encourage her to use words herself.
I know that I’ve been told that her speech delay is not my fault. I know that may just be me beating myself up over something I can’t control but the guilt is really eating me up. As much as it gives me joy to see her enjoying herself, to be playing and learning at school, it pains me to think that I fell short providing her with fun learning opportunities. What else could I have done? What else should I be doing? Do I not encourage her enough? Don’t I give her enough opportunities to learn, play and grow at home? Did turning on the TV ruin her? Is it because I spent too much time on my computer? Should I have force-read to her when she turned her head and cried whenever I tried to read to her? What did I do? What didn’t I do?
All I want is to do what is best for her. But now I am beginning to doubt that being home with her is best. I feel so lost right now.
Read MorePrelude to School
Whew! I haven’t been to this much school since I graduated! I had to bring TLE’s immunization records and fill out some paperwork before she officially starts school next week. The director suggested bringing TLE along to let her get a better feel for her future classmates.
As soon as we walked up to the center, TLE jumped around excitedly to see the playground. There are two playgrounds at the center, each with different apparatus to help the kids with their motor function. Luckily, we were asked to come around playtime so TLE was able to join abunch of the kids on the playground. Then we moved inside and I worked on filling out paperwork while TLE had the very important task of trying out all the toys they have to offer.
The director filled me more on the program and gave me the breakdown of the class schedule as I filled out paperwork. There is a lot of free play as well as structured play to help the kids develop whatever skills they may be behind on. She also informed me of the open door policy — basically, I can sit in on the class whenever I want. This may just ease my Mommy-guilt.
We stayed for about an hour. TLE was allowed to roam the classroom, playing with whatever struck her fancy. And just about everything struck her fancy. She zipped from activity to activity, playing with blocks, the play kitchen, toy cars, balls, etc. I liked seeing how the teachers played with her, how they really got down to her level and explained things to her. The class is very small, maybe 8 kids to 2 teachers as well as additional volunteer aides and specialized therapists.
Later in the day, we attended an open house at the co-op preschool that I want to send her to when she turns three. Cooperative preschools are almost entirely parent run, with one paid teacher. I love this model since it is a perfect bridge between homeschooling and traditional schooling. There’s only one co-op preschool in the area so I want to be sure to get her name down as soon as possible. She loved the classroom and while she’s still too young to sign up for the upcoming school year, I’ll definitely have her name down for 2011.
I had a few concerns about preschool, especially since there’s no telling if she’ll still be delayed by the time she turns three. One of the parents that I talked to eased my fears. Apparently, this co-op is where the school district recommends for children who have aged out of the county early intervention program. Lucky! So either way, TLE would likely end up going to this co-op which makes me happy.
What doesn’t make me happy is the fact that I don’t know what we’ll be doing for elementary school. There’s an elementary school just a half mile walk from our home but I refuse to send TLE there. Unless TLE settles down a lot in the next few years (doubtful), I think that putting her in an overcrowded classroom will kill any chance she has academically. I remember being in a crowded classroom in elementary school and being frustrated that I wasn’t being called upon. (Yes, I was the annoying kid that always had her hand up.) Teachers said that I was disruptive or uninterested. Nothing could be further from the truth. I was frustrated and bored out of my skull because I wasn’t getting the attention I needed. If possible, I don’t want to put TLE in a similar situation.
There are two very popular charter academies in our school district but there’s a waiting list a mile long. It is all lottery and the idea that there’s nothing I can do to ensure that my daughter gets a good education makes me sick. All I can do is put her name down and pray really hard that she gets in. Otherwise, homeschooling becomes our other option. Luckily, there’s homeschooling through the district, which provides curriculum as well as teacher guidance once a month, which ensures that TLE would be following the same curriculum as her public schooled peers. Still, I’d rather that she was in the charter but I guess we’ll deal with that when it is time.
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Copyright
Text and photographs copyrighted by Michelle N unless otherwise noted.