Saying Goodbye to EI

Happy Monday All!

It's been an insanely crazy busy month with finally an end in sight soon enough (for a little while at least). I started to write a "poor me" depressing post yesterday but decided to stop myself because despite a lot of the negative things I've been experiencing lately, there is some good.

Miss Autumn belle has been improving speech-wise but her sensory issues seem to be getting more noticeable whenever were out in public and it doesn't help that she's up when the sun rises and doesn't fall asleep until it's dark out so we've been experiencing long days here. The only perk is taking her into the pool. It's where we both feel at ease and sleep more soundly at night after a day of water and sun. 

In addition, this is Belle's final week of EI. She ends on Wednesday and then it's vacation/birthday celebration time. It's also very bitter sweet and it hit me like a ton of bricks while I was driving last week. I can't believe EI is going to be over?! When did this happen? I know I've written about my EI experiences before and love that we've had such a passionate and loving team of therapists who continued to stay consistent and with us even during the move. They were there when we got her diagnosis. They were there during those long winter months when nothing seemed to be going right. They were our light out of this dark facade. Her therapists commitment and perseverance has paid off. We went to have another eval at the school last week and the case manager and Autumn's new speech therapist (her school one), couldn't get over how affectionate and social she was being. They had even questioned her diagnosis for a moment until a routine/OCD tantrum came into play. The case manager stated that they rarely see such jumps in development within a year like Autumn exhibited. I know this is all in part to her therapists working so hard with helping her gain these milestones. Like I've said before, who knows where Autumn would be today if I never got EI involved. Sure, I'm positive I would've helped her as much as I know how, but those extra tools and techniques have transformed this family. I'm going to miss them so much. Thank goodness for cell phones and being close enough to visit.

So what's next? In two weeks, miss Belle has her evals for speech and OT at the clinic and then the IEP with the school district. It's hard to believe that only a few months ago, I was thinking of opting out completely regarding her starting school this fall, but I've realized that it would be doing her a disservice and this is not about me or something personal I've done. I don't see or hear my spouse or other family members taking Autumn's limitations personally like I've done, so why continue to try to be superwoman when I know realistically, I'm human and far from being the perfect mom. Plus, it's about doing what's best for my daughter even if that makes me feel vulnerable and giving in to continued additional help and support. There's nothing wrong with this and I realize it now. If I don't do this for her, who will? So she will begin school half-time this fall. Depending on how well she does and thrives, we may send her full-time half year. Again, it's a wait and see decision. At the clinic, she will receive therapies twice a week: two sessions a day so we will be busy come fall.

With the end of EI also surfaces a lot of emotions that I've been experiencing. The "I can't believe a year had gone by" feelings of bittersweetness. It hurts because part of me is excited to see the year go and Autumn turn three but then another part of me feels like I didn't truly enjoy her being two because of how busy and focused I've been on getting her therapies to better her skills, among other things. It's a double-edged sword for sure. I know that I need to just cut my losses, be proud of how far she's come, and enjoy each day within the moment and that's my goal this summer for the both of us. 

Over the next few weeks I'm going to be busy but will try to update my page and try my best to write here. After this past year, some down time is long overdue. 

Xoxo,

Trish 

This is Autumn's birthday crown that her DI does for each of her kids who are aging out. Can't believe it's complete. Bittersweet for sure! My baby is graduating EI on Wednesday! 

Landslides

Good Morning and Happy "Hump" Day to all! The past few weeks have been extremely busy and I don't see them slowing down until July 3rd, which is Belle's last day of EI (cry). I'm looking forward to a little break from her therapies so that we, as a family, can enjoy time together as well as celebrating her third birthday. However, once that week is up, it's back to evals with the clinic we will be taking her to for OT/Speech and then the IEP at the school (can't wait). 

Anywho, Autumn has been doing stellar. She recently had her discharge evals through EI and has made tremendous progress. For instance, her expressive language went up from 6-9 months a year ago to 24-27 months! Was I doing a happy dance when I heard that? You betcha I was!! She did well in all of the other areas of development, but we still need to work on the reciprocal piece of language and her sensory issues, which can limit her ability to focus and stay on task.

The eval at the school went well. It was short (thank goodness) and the school psychologist was efficient. She didn't do a lot of things bc of non-compliance, which we figure would occur. I must add that I love that her EI team all checked in with me to see how Autumn made out. As much as I'm looking forward to EI ending so that I can have some free time, I'm going to miss her therapists dearly. They've been like family to us. I'm sure they will miss Autumn as well, but it's time to move forward, which brings me to my "topic of conversation" today that I've been meaning to share for weeks now.

This is the time of year of celebration. It's graduation mode everywhere, which is a sign of growing up and moving on with life. Any who, I know Autumn isn't "graduating" per say, from school, but she's moving on from EI and this is where I get emotional. So you all know how torn I've been about sending her to school this fall. How I've feared the unknown and worry about how she will adjust without her mama bird there holding her hand through the way. My emotions have been raw and have challenged me in different lights, but deep down, I know what I have to do in order to give my daughter the best chance in life. I was listening to the radio as I normally do on my excursions outside of the home and one of my favorite songs came on the radio. As a child I never really took the time to understand the song and what it could mean to me personally, but when I heard it this day, it hit me as if I was sucker punched into my stomach.

This line in particular: "I've been afraid of changing because I've built my life around you." 

Isn't that the truth. For the past three years of my daughter's life, every single decision I've had to make has had Autumn in mind from taking a shower to seeing a client, Autumn's needs has always come first. Just like many parents, I too find myself neglecting me in order to give her my all. Will this stop? Probably not, but just listening to this song made me stop into my tracks and realize that as Ms. Stevie Nicks says, "Time makes you bolder, children get older and I'm getting older too". 

It was in those sobbing moments that I knew it's time to start letting her go. Meaning letting her go to school on her own and putting my trust into God's hands that everything will be okay. It was also in those moments that I realized I need to also start living for me too. Whether that's gardening, exercising, getting more in touch with my spiritual side or working again as a therapist, I know that I too need to stop beating myself up with guilt over this decision to send her to school and over my decision to want to do something for me for a change (work again). 

I firmly believe those "aha" moments happen when we need them the most. So as everyone celebrates their child or children moving on up this June (whether in age, school, life, etc.), remember to go through your own emotions, let it all out, take a deep breath, and be proud of this moment. As difficult and scary the unknown is for us all, if you believe, God will see you through it.

Xoxo,

Trish 

Here's a picture collage of Autumn: newborn, one year, two years, and just recent. Darn they grow way too fast! Hate it but love it (is that even possible?).

Breaking Down the Autism Diagnosis

Good morning all. I hope everyone is doing well. I was sitting down enjoying my "super mom" coffee this am and realized that I've never written a post on why Autumn was diagnosed with Autism. Sure, I've disclosed bits and pieces of information, but haven't shared the "entire picture". 

So I've decided to share the "entire picture" using the DSM-5 diagnostic criteria as a guideline and then break down in BOLD what Autumn's symptoms that caused alarm and a diagnosis. Please remember that each child whose on the spectrum will experience different symptoms and they will vary in level of severity.  I've studied the DSM and had to use it when I worked with my clients. However, I'm no expert or doctor. Just a therapist turned mom whose acting primary role is of being a mother. So if those of you are reading this and saying, "my child does xyz...maybe they too are autistic.," go talk to your child's pediatrician and get a referral to see a developmental pediatrician and pediatric neurologist. They are the experts. What I share here is about my child and only about her. Use as a guideline if you wish or a tool to help you understand more about Autism, but don't take my words as being absolute. Talk to your doctors. Also, those of you who follow this blog know how much I love and adore my daughter. I'm not trying to highlight her negative behaviors because some of her autistic traits are positive (yes I said that). I just want to open the doorways into what Autism looks like for one child, my child. That is all and I hope that after some of you read this, you will walk away with more knowledge. 

Okay now that's out. Here we go, and again, everything is from the latest DSM-5 (Diagnostic and Statistical Method of Mental Disorders, Fifth Edition, 2013). 

Autism Spectrum Disorder (299.00)

A.      Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

1.       Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

Autumn's expressive language is around 18 months maybe a little higher. She doesn't "talk" in conversation. She only speaks when she needs something (for example: "I want juice please"). She can recite all of her letters, numbers, shapes and colors. She is labeling what seems to be everything, but again we do not have any real back and forth conversation, but we've been working on this daily. For instance, doesn't ask how I am or says things like "baby is happy" or "daddy is sad, I help daddy feel better." Which, at her age, she should say by now. She should be more "in tune" to other peoples feelings and the world surrounding her. The best way to put this is I feel as if she doesn't understand what others think or feel. She lacks the empathy where she can't relate or read others emotions. If I cry, she doesn't understand. She also doesn't smile back at me when I smile at her unless I tickle her. Basically, sometimes I feel like I'm seen as a tool to get her what she needs. 

2.       Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

Autumn still struggles with eye contact and it takes several times for her to respond when I call her name. Her receptive and expressive speech (again) is lower than it should be. She still has difficulty understanding directions but has improved somewhat. She will also scream and make strange sounds like crow sounds or will say the same words/sentence in order again and again. We believe the screaming/crowing is a vocal stim. This is something were currently trying to work on decreasing. Also, one can have excellent expressive language, meaning they can speak/talk well, but they have a difficult time engaging in conversations or become lost in their own words. So lack of speech doesn't always mean autism. There are some extremely talkative kids who have Autism because of the above (debunking myths here).

3.       Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

This is where Autumn is trying but there's some trouble mainly bc of the lack of words used to communicate. She will say hello to the little kids and grab their hand to play, but when they try to talk back to her to engage in a conversation, Autumn can't say anything else and "looses" them. It's one of the most heartbreaking things to watch. She does great otherwise, but mainly prefers to play alone after trying to engage with the kids. Her make believe play is great for her age. However, she doesn't like it whenever myself or a therapist tries to play and take turns. She will scream and fight her way out of it, but eventually she'll come along. Sharing and turn taking has been an ongoing work in progress and this has improved immensely over the last few months, but still a struggle at times. 

B.      Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1.       Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

As stated in the first section, she does become fixated on certain words and sounds. We don't believe she has echolalia, but tends to repeat the last thing said at times. Still not enough for her therapists and myself to be alarmed. She will line things up (lining up isn't always an indicator of autism-this is the organizational piece that I love about her) she flaps her hands whenever she gets excited and has verbal stims (she currently crows). 

2.       Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).

My Autumn Belle is big on routine and I mean, HUGE on routine and "sameness" as sameness is her comfort. However, she does adjust pretty well when she's not home and at her Memas house or when were on vacation. Maybe it's because I'm with her or she's with her Mema whom she also loves and trusts and she still gets the typical things that are part of her routine? I'm going to assume so. Another factor mentioned above is her difficulty to adjusting to new things. This is typical anytime one of her therapists introduces something new. Same with me here at home. She will scream and cry and throw herself on the floor whenever we try a new activity. This doesn't last too long because we don't allow this behavior for too long. After a few minutes, she comes along and will participate, but her "non-compliance" is one of our biggest concerns and the only reason why we implemented ABA therapy this past winter to kick this behavior in the bud. Anything new, "no thanks" in her world. This goes for foods (chicken and applesauce almost every day) and new people as well, which is why she scored extremely low in the Battelle. She didn't want to do the "work" bc she didn't "know" the therapist administering the test. However, on the upside, she has been saying hello to new people whenever were out. This is a huge and I mean HUGE milestone in our lives. Usually she says hi and is back to being fixated on something  else or will repeatably say "hi" over and over while the person tries to engage in conversation with her. A work in progress.

3.       Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).

To be honest, I am not sure if she has any real attachment to anything other than her momma lol. She currently is preoccupied with wanting to watch Frozen every night before bed. It's become her bedtime routine but not sure if that counts. 

4.       Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Yes, yes and yes. Autumn also has sensory processing disorder, but that's just another symptom of her autism and I can write an entire post on this topic alone. She needs constant pressure/deep massages. She seems to be hyposensitive when it pertains to pain or water temperatures (bath water too hot or too cold or food too hot and she doesn't say anything-of course I cool it down and take her out of the tub immediately knowing if the temp isn't right). She has light sensitivity. Hates loud sounds or people talking at the same time. For example, in mickeymouse club house, she screams when they say "oh toodles". I guess she's filtering out the sound. She is constantly moving and going. Nonstop. Rarely naps. Has poor coordination meaning she walks over everything and trips easily. Some of these symptoms mimic ADHD but she's too young to be diagnosed with it. For now, we have her on a sensory diet where we jump with her, rock her and do other activities to help "calm her". Again, a lot to say here, but the above are the main concerns.   

Specify current severity:

    Severity is based on social communication impairments and restricted, repetitive patterns of behavior(see Table 2).

C.      Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

        I started to see symptoms when she was about 18 months. She also lost words and this was probably the biggest indicator something wasn't "right". The "Prelude" post breaks down this in more details.

D.      Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

     Yes, I would say this has in more ways than one: social (her communication deficits), occupational (the sensory processing disorder), adaptive/self-help, etc. The communication and sensory issues are the biggest concerns. Everything else is relatively mild. 

E.       These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

No global developmental delay bc of multiple areas of delays. 

***So I hope that my personal breakdown of what Autism looks like for us helps you understand a little more about the spectrum regarding Autumn. I didn't list every little thing here because this has already turned into a novel. Autumn has made tremendous strides with EI therapies and us working with her in decreasing the "non-compliant" behaviors. Her symptoms may get better or worse with age, but the above is regarding today. Lots of love and hope. As in her favorite movie and song (changing the lyrics): "The stims never bothered me anyway". 

Xoxo,

Trish

The "non-compliance" above. 

The pressure below (looks like a normal hug, but this is usually every few minutes and she pushes her lips against my cheek and squeezes my neck so hard that I feel like she is strangling me. She also likes to wrap her arms around me from my back and climb on me like a monkey and will make funny sounds when she does this. Looks so precious and believe me, it can be, but every few minutes it can become exhausting and painful for me bc she's pulling my hair and my skin.)

Her playing with the water table bc she's obsessed with water (not sure if this is truly a good thing, her love for water, it scares me a bit, I'll admit). She is "fearless" and a bolter so this is a fear I have, which is why I feel like I have to watch her 24/7. Another ongoing fear for many parents of children on the spectrum, as most of our kids love potentially dangerous things and are attracted to water and wandering. 

I love this girl! 

Small Talk

It's been a while since I've posted anything in my blog. The past month has been crazy with a capital C. Between Autumn therapies, family stuff, Matt's work schedule and our mini weekend getaway, I seriously have had minimal time to write anything of value. I've also been waiting for the right moment to post this one topic that I've been longing to share about with the world. It's the thing that I dread talking about with others in public, it's the small talk that I lothe the most and after this weekend I feel it's time to share.  

I get asked this question more times than I brush my hair (jk-well sort of) and it's one of those questions that I always have to say, "well see how things go". I know most people mean well and like I said, they're trying to make small talk, but sometimes I just don't know what to say... If you haven't figured out the question by now it's the "do you plan on having more children?" and all of the unsolicited advice that follows when I tell those that Autumn is quite the handful right now so the answer is unknown and that's the honest truth. 

I wish it were easy for me to say, "let's give it another go", but it isn't. Autumn does require more time and attention than maybe most NT children do so I feel like I'm bound to her and to throw another baby into the mix wouldn't be fair for her right now in our lives. Yet, a huge part of me wants to give her a sibling, someone who will grow up with her and be her Anna or Olaf to her Elsa, but again, that dreaded fear takes over. I've accepted the fact that Autumn may be my only child and at times, I have felt angry, resentment, and depressed because I feel that because of her developmental delays, our parenthood experience has been jaded. I say "our" because despite all that I've written thus far, I'm not the one who needs the convincing. 

Matt's more of the planner and everything has to be perfect in his world. At the current moment he's our sole financial provider, working two jobs and never turning down an opportunity to make extra money, so that I can stay home and focus on caring for Autumn. He's sacrificing his time being able to spend with Belle so that I can be there for her even though I have put off my own career (sacrifices on both ends, but all temporary). I know that I am blessed to have a husband who plans and wants to make sure we all are treading our heads above the water. I couldn't be more grateful and appreciative of such a mate so I understand why his reservations regarding expanding our family is more of a concern than it would be for me (he's thinking, can we afford this, I'm thinking, everything will work out la la la). 

Yet we both know that even with the best plans, shit happens. I planned my pregnancy with Autumn six months before even trying to get pregnant, I did everything "right" while being pregnant, had a very easy and minimally medicated birth and no complications and of course tried my best to practice attachment style parenting (minus the being able to nurse part, but she associated me with feedings and I fed her like I would've if I was nursing her). I did all that I could to try to "protect her" from autism and guess what, I had no control. I can't change the past or go over what I didn't do right during my pregnancy, birth and her first few years. It is what it is. I know God made her special for some reason that someday maybe I'll have the answer to but for now, I'm trying my best to "embrace the amazing". 

If we have another, could he or she have autism or developmental delays? Possibly, but that's the risk we all take when we have children. I also know many parents who didn't let their first child's limitations hinder them from having more children. I secretly want to know why, but to each their own. So at this point in our lives, the answer really isn't certain. I think to myself how awesome and incredibly blessed I am with my just my one beautiful girl right now and how with just one, we can travel the world, vacation, do so much together, and live financially comfortable, maybe even some day buy a vacation home elsewhere. How I will have a best friend for life without feeling like my time is divided or that I'm not being fair to one or not doing enough for both kids. Plus, I will be able to go back to counseling soon and while Autumn is in school, I can focus on my career and still be done in time to pick her up daily. I think of all of the great experiences yet to come with just the three of us (four if counting the dog). Yet, there may be this uncertainty that will remain...the, "why did we let fear win?" playing like a bad song stuck in my head. Right now, today, I'm content with what I have, but tomorrow, my mind will most likely change as the Pisces mind usually does. Darn fish.  

I guess only time will be able to tell and take us to the answers that I hope to receive. Whether it's staying on course or taking the plunge into deeper waters, we will figure it out. 

Xoxo,

Trish 

PS- Off topic, but too cute to not share: Autumn LOVED the beach this past weekend. She loves the sand and everything with sand and water...I know what someone is getting for her birthday (maybe sooner) this year! An ocean! haha, I wish!

My Open Letter To EI

While Belle fell asleep on the couch for a nap after having a busy morning with her Mema as well as waking up very early that same day (the stars were aligned), I decided to take some time and finally write an essay to enter into a contest describing my experience with Early Intervention Services. The winner will receive a gift card so the way I look at it, why not try and see what transpires. If I win, great. If not, it was a nice reflection piece.

I want to share with my fellow readers my essay and for you all to know that what I wrote about truly describes my experience with Early Intervention Services. I couldn't focus on just her one DI therapist, but she's the inspiration behind my reflection piece. Without getting too mushy here, Belle's DI has become a good friend to me. She will probably be the only one I stay in contact with on a regular basis after EI is over. It's not that we've become friends, she truly cares about my daughter and family's well being, always thinking of alternate ways to help us engage, even moreso with little Belle, in order to bring out her best. Thus, I am extremely grateful for her timing in our lives. 

Before sharing my essay, this is going to be a very busy week. I may not post much on my blog or Facebook page. I will try to check in from time to time. I hope everyone has a great week. 

So here's my piece, Enjoy!

An Open Letter to Early Intervention Services

By: Trish

 

Dear Staff at Early Intervention Services:

 

Words cannot express the true gratitude I have for the early intervention services that my daughter Autumn has received since April 2013. From the very first moments of making the initial phone call to the evaluations, meetings, therapist assignments, etc., every experience regarding early intervention has surpassed my expectations as well as been a positive one for my family. To begin, Autumn was around eighteen months when I started to notice that she wasn’t meeting some of her developmental milestones. Being that I work within the mental health field, I knew that I needed to get early intervention involved in order to best support Autumn’s future. At first, it was very difficult for me to hear that Autumn met the criteria for EI services. I had believed that perhaps it was my fault as to why she was delayed. Luckily, the team of therapists who did the initial evaluations alleviated my fears, comforted my tears, but most importantly, reminded me that I wasn’t alone and that my daughter’s delays were NOT a reflection of my parenting.

Once Autumn started to receive her therapies, I portrayed an active role during her sessions; learning and relishing in the knowledge gained from each one of her therapy sessions. Her therapists taught me skills such as providing PECS, sensory input, functional play (to name a few), that I never even imagined could help my daughter begin to speak, focus and attend. They listened to my concerns, gave their professional advice, accommodated our busy schedules, and have always been a phone call away. Her therapists have become more like family over the past year. Even with our move to a different county, they still continued to see my daughter because of their true dedication and determination to help her achieve her goals. In addition, our service coordinators (in both counties) have taken personal time to discuss my concerns about Autumn’s future, were emotionally there for me when she was first diagnosed, and have also worked to accommodate our needs, especially during the move. We have been truly blessed to have a team of professionals who seriously love and I mean LOVE what they do for a living: they adore our children and have a passion for helping them reach their full potential. Bottom line, they care.

When Autumn originally started EI she wasn’t saying words, didn’t make eye contact, etc., and was disconnected from the world. Because of the services received through EI, my dedication and determination to follow-through as her parent and primary caregiver, and our overall family support, Autumn has made leaps and bounds throughout the past year. She is now labeling everything (words), her sensory issues and negative behaviors have decreased, her attention span has improved, but most importantly, she now greets her dad when he comes home from work daily. Two months ago, she wasn’t doing that. The goals initially set forth when we first started EI have been met. Autumn is communicating with me! She is talking! She is growing into the little girl I’ve always dreamed of having as my daughter. As a parent, I couldn’t be more ecstatic, proud, and grateful for everything I’ve experienced throughout EI, as I know that because of her therapies, my daughter is who she is today: full of unstoppable potential.

My continued goal is to share our success story and to advocate for the importance of EI services. I understand that for many parents, this road may seem long, tiresome, and full of anxiety, but I often wonder where we’d be today if I didn’t put my own pride aside to make that initial phone call. Would Autumn be this happy, sweet little girl or someone entirely different? Thus, I will never regret the choices I’ve made as her parent. EI helped create a new path for my family, a new vision on life. I will always be imbedded to her therapists for the support they’ve given my family and for the chance of a bright future they’ve helped weaved for my daughter to experience. 

EI will soon be coming to an end, and despite how painful it will be to move forward, I am ready to see what else my daughter can do. She’s become this amazing butterfly under our wings and now she’s getting ready to fly on her own accord. So with much love and appreciation, thank you early intervention services for everything you’ve given our family. The one-time impossible has become the possible, full of endless opportunities, all because we had support; we had you (our EI team) by our side.

 

Sincerely,

One Satisfied Parent for Life

ID Meeting and the "Letting Go" Battles Within

It seems like it's been a while since I've posted in my blog. A lot has transpired over the past week that by the time 8 or 9pm rolls around, I'm ready to go to sleep. 

To catch up, we had Belle's ID meeting with the school district. Our service coordinator called me at 10:30 (time of our meeting) to say she couldn't make it. I was a little disappointed because it would've been nice to have someone else, aside my husband, validate my words. The child study team were all very pleasant. I stated right off the bat that I'm not interested in full days, even if she qualifies. It's not going to happen. Even the five days a week for two and a half hours seems like a lot and maybe it's because she's going to a real school, not a daycare or preschool, but school where other students will be in first and second grade. My little, just turned three year old...it's a bit overwhelming when I think of it all. Plus, they are moving to a bigger school (right now it's pre-k and the kindergarten program, it will be the pre-k through second grade). I agreed that I would go through the referral process and get it out of the way, yet a part of me still has this feeling of uncertainty, like I should possibly wait to have her start when she's four. Maybe it's the momma bear in me that wants to "protect her" as long as possible or the laziness in me who doesn't want to have to deal with all things associated with school right now. Or is it that I am scared to let go, even if it's for two and a half hours. I am worried that some "big kid" will pick on her or hurt her, that she'll run away from her teachers, that they won't share the same amount of love and comfort that she receives with me, etc.

As of last week I was perfectly fine with starting her this September, yet now I have these feelings again. Ugh. I hate how my mind works. I suppose if they kept the preschool program in the same location I wouldn't be so reluctant. The only perk is that she will be at the same school for five years. That's a plus.

Okay so back to the meeting. I was very upfront with the CST and stated our concerns, etc.,. They asked if she had a diagnosis and I was reluctant to share but did anyway because I am not ashamed. Just based on her diagnosis alone, she is accepted into their program, but they still need to do the evals and then have the IEP to make sure a plan is set in place. The CST asked me questions as to how I knew that she had autism, what has been working, how far she's truly come, etc. I was glad to share and give them my suggestions. It felt good being able to educate and advocate for my daughter and because of my knowledge, the meeting went smoother than I had originally anticipated. My husband accompanied me to be there for moral support. Originally, we had plans to go down to the shore so when we saw our meeting was scheduled that day, it worked out perfectly because Matt had already put in for a vacation day. He was quiet and attended to Autumn while I did all of the talking. The school psychologist had made a comment about that to Autumns OT (who happens to be the OT at the school-another perk but she's expecting and won't be there when Autumn starts), thank goodness the OT came to our defense (dad isn't home with Autumn, so he's not going to do most of the talking, you're lucky he came to the meeting, most dads don't). Oh how I love her!! The school psychologist was the only one who seemed a bit indifferent. I am sure if she were a colleague we would work well together, but butt heads. Very analytical and straight forward. That's okay but for some parents, it may come across as being intimating.

Overall, it was a good meeting. Autumn was well behaved and she played with their toys. Her IEP is July 7th. Right before she turns three. I joked with the CST saying I never thought I'd be on this side of the table but I am glad I can be the best advocate for my daughter. I also realized that as much as Autumn has improved in so many areas, we still have to go through these things (meetings and evals) and part of me feels exhausted for her because to me, she's perfect. Yes, I say that now. I really have come a long way this month in just being grateful for her progression and what she "can do" rather than focus on what she "can't" and comparing her milestones to other kids. 

Speaking of the "cans", this past week has been huge! She said her first five syllable sentence, she's labeling everything, she's repeating words when I ask her to, she said clear as day: octopus, tiger, chocolate, Leah, and grandpa (more words can't think of them all) AND she spelled her name outloud!! Typical or not, I believe ANY parent would be proud of the above!

And maybe the accomplishments above are giving me my "second thoughts" about starting her with the school district this fall. That a part of me believes that I've done so much for her why bother, but then another part of me says, if I never try it, how will I know if it works or if it doesn't work. Worst case, I can always take her out of the program if it's too much for either of us. Nothing is saying I can't. Then again really what this is all about is she's my baby. Yes my soon-to-be three year old who looks more like four because she's so tall, yet she's not potty trained and still my little girl that even for three hours, I don't want to "leave her" just yet. It's more me (always has been). I blame attachment parenting (lol jk). I go back to the first three days after giving birth and I remember clear as day crying about Autumn growing up too fast and now, here we are talking about preschool!! When did this all happen?? I knew then how precious our time was together and I suppose I just don't like wasting my time or giving up time that I could've been with her, because I know it goes too fast and I will never get these years back. I know this, which is why I hold on so much. So that's the enigma behind this so-called riddle I dance around with everyday: I am not ready to let go because I am selfish and I don't want her to grow up just yet. Well that's wrong I know and deep down I have to learn to let her go and let her spread her own wings. I am going to be a blubbering mess when she starts school (either when she's 3, 4 or 5) because it is the beginning of her becoming her own person, of her weaving her own web, her own path in life. And THIS is the most difficult: it's the beginning of "mom won't be my entire world" anymore. Oh boy how that is going to hurt but then the spiritual/logical side of me says "I will be there", maybe not front and center but "I will always be there". It's going to be a beautiful, bittersweet change we both with experience together. Parenting: a joyous chaos of everlasting emotions. 

Gotta love it!

Xoxo,

Trish

PS: This takes me back: 

Anniversary-Easter Weekend Among Others

Good morning all. I hope that everyone had a great weekend with the Easter and Passover holidays among us. Saturday was our wedding anniversary (previous blog post about it all) and we were blessed enough to have my mother in-law to take Belle for the evening Friday night so that we could enjoy some couple time, minus the child. We went to the Mexican restaurant (the same place we went for my birthday) and then came home and watched a few episodes of American Horror Story (getting caught up on season two now-we've already seen one and three). It was nice and relaxing but of course we missed our belle as the house was too quiet without her presence.

On Saturday, the hubby slept in until 10am, whereas I was up since 7:45 (that was sleeping in to me) and did some odds and ends around the house. Once the hubs got out of bed, we went to the local bagel place for breakfast (I really love their bagels) and then came home and enjoyed the sun and scenery on our upstairs deck. I seriously can't wait until the weather gets warmer and it's summer time. I am so looking forward to many more times sitting on the deck, drinking some coffee and enjoying the morning. We also have a house guest. A momma sparrow has decided to make a nest underneath the auning of our top deck for her babies and herself. I love watching her as she flies to an fro with little earth worms and sits in her home ever so quietly. Oh the simple things in life.

After enjoying some quiet time together reminiscing the last 11 plus years of our relationship, we got to work on the house, cleaning everything from top to bottom. There's nothing like spending your anniversary together cleaning. I loved it because I love a clean house. Anywho, Belle came home to us around 5pm and we both were eagerly awaiting her arrival. We missed our little sassy girl.

Once home and settled, she had her typical dinner of chicken tenders, applesauce and another side and then we ended the evening with a tv show before she fell asleep in my arms for the night. Oh how I will miss these moments as she grows older...

Easter, I thought, was a good day. Belle woke up to her Easter basket and was so giddy. She took all of her stuff out and lined them up, even the chocolate eggs! It was so adorable to watch. When family arrived, she was even more spoiled with more Easter baskets and items from her grandparents and uncle/aunt; this child is truly blessed.

During our cleanfest the day prior, I had filled up plastic eggs with candy for miss Autumn belle to "hunt" while outside on Easter when family arrived. Matt spread them all out and it was really nice to see him so into doing something for a holiday. Well, as expected, she wasn't interested in the egg hunt. She was more interested in her swing and throwing Leah's balls down by the rocks that surround the above ground pool. That's my girl. At least we tried right?? 

After the family left and we were settled in for the night, we got to talking and of course the "disappointment" and "comparison" came up but this time from the spouse. I totally understand why the hubby was feeling the way he was and that's well and good but to me, Sunday was a hit. Family got to see how far she's coming along. We also got to witness another "first": Autumn repeating and getting into a movie (frozen) by trying to say/sing along with the characters. I tried my best to hold back the tears because it wasn't that long ago where I questioned if she'd ever like Disney movies let alone try and sing along with them.  

Anyways, we talked about our feelings and maybe it was my so-called revelation a couple of weeks back, but lately I've been more accepting and relaxed about Autumn in general. I am trying to not let her autism define who she is and what she's capable of doing. I don't want to focus on what she's "not" doing, but rather her successes. I feel that were already inundated with the "nots" that a big part of me just wants to scream "stop it!!" to family, her therapists, my husband and even myself. Maybe it's also because I'm running on co-pilot most days that I am starting to feel burned out with her therapies and all that I have to do so that she "fits in" with regular society. Part of me wants to pretend that she's fine and there's no need for integration. I just want her to be a typical two year old (soon three) with no expectations attached. So yeah, I find myself not getting worked up over a easter egg hunt or a playground meltdown. To me, they've become insignificant for now. 

For instance, yesterday we decided to have one of her therapies at a playground. It was a welcomed change as her one therapist got to see her in a social setting, tantrum and all. I was very relaxed and honestly didn't give a crap if she got upset or annoyed that we were there. I really thought I heard her mutter "go away"! At first I was like, "did she really say that?". I laughed because that is what most kids who just want to play would say. They don't want mom or the therapist there trying to "help" them. They want to be around the other kids or just be free of expectations and demands. It was also in those moments shortly after that I realized, this is the beginning of her wanting independence socially and how proud I was of her because, this is typical. This is what we want our kids to be able to do. I smiled as she ran off and I looked on, but as always, she came right back to me. That's my job as a mom is to let her spread her wings and fly and I will be there for her when she needs my love and guidance. Such a proud mommy moment.

Friday is our ID meeting with the school district (eye roll). More "nots" and "others thoughts" can't wait! I am going to stay strong and proactive. The fact that they got us to even consider the referral process is a big deal. Well see what happens. Until then, happy Wednesday!

Xoxo,

Trish

Doing what she loves to do, throw balls. She was just riding her quad, which is why she's wearing her helmet. Badass.