Our Long Road to School - Parent Perspective Guest Blog

My final guest blogger has shared her journey with us and opened up about the challenges she faced when finding the right placement for her son.  I hope this story reminds teachers that every child in your class has a parent(s) who's whole world is that child.  We must be sensitive to the parents wants and concerns for their children as they know their child best.  I am so excited to introduce this blogger mommy and the story she so willingly shared with us :)

It's reading stories like this that remind me that I should continue send those happy notes home to share with parents the mini milestones their child makes, the successes they encounter, and the work they produce.  Every text or phone call home to a parent must mean so much more to them than it does to me.  

Our Long Road to School

I am a mom of three young children, 4 year old twins and a 2 year old.  My twins are both on the autism spectrum.  My son Aaron was diagnosed at about 2 and my daughter Scarlet is in the official diagnosis process now but we already know with absolute certainty she is autistic. She was diagnosed with Sensory Processing Disorder and Dyspraxia.  She also inherited my anxiety, unfortunately. Aaron has a lot of medical issues in addition to having autism.  When he turned 3, the county pushed me to move him from the in home early intervention he had been receiving since 3 months of age, into the special ed preschool. I was terrified at the idea.  Aaron has had a fair number of hospitalizations in his first few years of life.  He's had several MRI's, EKG, EEG, endoscopies, ECG, a feeding tube for a while, zillions of blood tests and several surgeries.  I was worried that no one could look after him better than me, and what if something happened when he was there? He seemed so little and I was worried about trusting him with someone new several hours a day, 3 days a week. 

They turned 3 in April of 2012 and we continued with private OT and PT.   I also brought him to the local elementary school during the week for speech and occupational therapy.  We had a resource teacher who came out every week and worked with him for an hour.  At the end of the 2011-2012 school year, his therapists convinced me to give the special ed preschool a try in September when school started again.  I was hesitant but I agreed because they felt it would help him achieve his goals and progress further.

The first day of school was really tough, the first few weeks were, truthfully.  He kicked and screamed and did not want to go.  I cried after leaving him and cried on the drive home.   He went 3 days a week for about 2 months and his behavior seemed to get worse and worse.  The meltdowns and lashing out were more than I could handle. He seemed to hold it together okay at school but when I picked him up, he would start punching me and kicking me.  He was violent and off the wall for days.  I thought maybe school was too much for him and I had made the wrong decision. Since he was biologically 3 but cognitively younger, I thought he wasn't ready.  We switched back to resource and only went to school for speech/OT for a few months. 

When we moved in March of this year, I decided to try school again. We went and met the teacher before he was supposed to start.  She was crabby and scowling and didn't really say hi to my son or try to engage him. I had a feeling it wouldn't be a good fit, but decided to give it a day since I have a tendency to be overprotective (and kind of rightfully so with all of his health issues) I dropped him off for his first day and all of the kids being dropped off at school that day were crying.  It was March (7 months into school year) and she told me these kids had been in her class since September.  I picked Aaron up 3 hours later and he was hysterical.  He ran to me and was banging on the car door.  He was rocking and crying saying "mean teacher" the whole way home and the rest of the day.  I asked him what happened, but he was not able to tell me.  He doesn't have a ton of spontaneous language and has trouble answering questions like this.  He just kept saying "mean teacher" and rocking.  I emailed the teacher and when I didn't hear back, I called the principal and special ed supervisor for the county.  The supervisor called me and I explained how my son was very upset and despite hundreds of doctors appointments and hospitalizations, I had never seen him like this.  She called me back later and told me this teacher is often "misinterpreted" as mean due to her demeanor and her stern nature.  She wasn't the "warm, fuzzy type".  That was enough for me.  When the principal called me, he immediately offered to switch my son to a different school. I don't expect teachers to all be Mary Poppins types, but this woman clearly and sadly had no love or passion for her work.

We found out there was an opening at another neighborhood special ed preschool.  The teacher called me and I instantly LOVED her.  She was very warm and kind.  She clearly loved her job and excitedly told me about their classroom.  I brought my son in to meet her and she got right down to his level and welcomed him, held his hand and showed him around the classroom.  Aaron started there in March and he has been really happy in her class.  We got really lucky.  She is one of those teachers that reminds you that there are still a lot of people who go into special education because of their passion for it. I blogged about it here.  Thankfully, Aaron will get to be in her class again this fall, and hopefully my daughter will too.  Even with school out, he still points to the picture of Miss Leslie daily and I explain he will see her in a few weeks and try to explain summer break.

We have a really great fit now for my son, but it was a rough ride.  We had several emotional IEP meetings and I left feeling discouraged and frustrated.  If I could say anything to our kid's teachers it would be this:

Entrusting you with our children is a huge deal, especially if they are more severe autism or have co-morbid medical conditions.  I have always believed no one but me could really properly care for my son. I did not trust that others would know what to do when he had an asthma attack or how to approach him with physical contact due to his PTSD.  We may seem overprotective but we just love our kids and its so scary to drive away and leave them in your care.  My son cannot communicate his needs and wants very well so I worry he will not be able to get his needs met or be understood.  When my son had a bad time with that one teacher, I thought about giving up and just keeping him home with me. Ultimately, I wanted to give school another go and not let one bad experience keep us from trying again. My son and I have been to hell and back with medical issues and autism and it's very, very hard for me to trust him with other people.  Yes, I have control issues for sure and I am sure some parents can do this with less anxiety.  For me, it has been terrifying to let go of the reins a little.  As the year went on he would run to his aide at drop off instead of holding onto me.  When I think about the challenges we have faced and how hard it's been on Aaron, I know its been hard on me too. I'm tired.  Some times I am irrational. You must understand by now that our kids may be different at school than they are at home, which can be very bittersweet for parents.  Our home life is very challenging due to Aaron's meltdowns and when he gets scared, he lashes out physically.  This happens every day. My son does not hit and bite at school, but does it constantly elsewhere. I don't know if he isn't comfortable enough there . He knows home is a "safe" place for him to share his deepest fears and toughest emotions. Even though I go to IEP meetings determined to be brave and professional, I always end up in tears.  I am really sensitive anyway and how can I not be emotional when it comes to my child? So yeah, sometimes we ask for the moon but it is because we want everything possible for our kids. I never know if I am doing enough for him, giving him the best possible start. 

It's been a roller coaster of a year with behavior issues, surgery for my son and my daughter's diagnosis plus chasing my toddler too.  I am really glad I took a chance on that third time with school and thrilled to see how much my son loves his teacher.  He is 4 and has been through so much, so seeing him happy at school means so much to me as his mom. The toughest part for me was to let go and trust he would be taken care of.  No one will do exactly what I do, but there are awesome teachers who go into special education because they really love it.  I'm still working on my trust issues. I'm trying not to let my fears hold my children or I back, while still keeping them safe. It's a hard balancing act and I am nowhere near the point of having it figured out.  Aaron still has a lot of behavior and sensory issues.  My daughter will be starting school this fall too. We have a long road ahead of us but this year has made us all a little stronger, a little tougher.  The most rewarding part has just been me learning to let go a little and watch my little guy rise to the challenge.

1 comment

  1. After reading this all I can think is WHERE is the Family of this Mom?? Who is reaching out to her. What is her support system?? Some public agency really needs to help this Woman going forward. There is no way one human being can sort this out and maintain her own health.
    If this were my Daughter or Son's family I would be working 24/7 to get family and the greater Community to come together.