Development Assessment

Development Assessment

Reflection – Friday evening.  I’m sitting here with a Smirnoff’s Ice – Raspberry and listening to Pearl Jam’s Vitalogy.  I recount the day’s events, as well as the dreaded child development assessment. 

I had one of those days today when I wake up and get the three kids out the door to their three different schools.  Then I get to have my time.  My time to fall apart.  It’s ok to cry.  And it happens.  A day when everything yucky comes to the surface.  Like the children’s book by Judith Viorst.  I had a crappy, weepy, awful day.  Could anything go well to lift my spirits?  My week started with a few appointments Monday, Tuesday, and Wednesday afternoons for my daughter.  The child with special needs.

I endured a three hour interview on Monday at a children’s hospital’s development and rehabilitation unit.  My daughter got to draw, eat a snack, and answer a few questions, like:  Who lives in your household? Do you have friends?  I got asked all the other questions filling up the remainder of the three hour time. Questions like:  Could you talk more about that? Could you describe situations?  Could you talk more about that so I can visualize how that looks?  This was precisely the reason why I had dreaded this appointment, I was wiped out that evening. 

I will receive a detailed report in a few weeks.  But at the end of this interview, the psychologist offered a brief assessment:  Most likely, my kid was deprived her first year in life and also in her foster home of three years.  She didn’t get her emotional needs met.  There was likely a food scarcity in BOTH homes.  I interrupted to point out that several of the people in the foster home were morbidly obese…

The clinician reported that food scarcity is common with obesity — the unstructured meal times, the ups and downs of food amounts.  She went on to tell me that my child received little to no structure and stimulation in the foster home which would explain the simplistic play behaviors, the lack of coping skills and the obsession with food and tv.

I thought to myself while she talked: I know, I have heard this, why were we on a six month waitlist to be seen here?

The psychologist said to lower my hopes and expectations as she won’t be changing anytime soon. “You basically need to lay down a different foundation, as you slowly remove the old one.”  Really? I said, somewhat sarcastically.   She continued, “Yes, expecting her to change quickly would be like letting your original foundation just crumble and fall apart without any support in place.”

Somewhere I hear my sister and brother-in-law laughing.

She said my kid CAN change over time, a long time, if the parents and every teacher is consistent each and every time with the same rules and repeated direction of adaptive coping skills.  Wow, I thought. Long time. Each and every time. Every single adult at home and school. Yeah! No problem.

Perhaps my depression is now better understood. Tuesday I informed my child’s therapist after another play therapy sand table session what was discussed at the children’s hospital.  She had more to say on this matter.

Friday rolls around and I couldn’t stop crying.  Every time I thought I had gained composure, I looked at myself in the mirror to get cleaned up. And every time, I saw my puffy eyes and eyelashes coated in Kleenex dust.  And every time, I whimpered: is she ever going to change?!  

I picked up my child at dismissal time at her school.  She tossed her name badge to her teacher when she saw me.  I waited for her teacher to make eye contact with me and to call out my child’s name.  Then my kid turned to face her teacher and pestered:  Did I have a good day? Did I? Did I? Did I have a good day? Did I?  Her teacher continued to dismiss the other twenty first graders, but stopped.  “Well, let’s talk to your mom about what happened.”

As I hustled closer so that Ms. T could tell me how my child stole a dinner roll from someone, I bumped into another mom’s arm.  I looked back and apologized.  The woman was wincing and rubbing her right shoulder.  Yup.  That was the finishing touch to my sh*tty day.

Isolation as a Special Needs Parent

Isolation

We went camping with 12 families over the long holiday weekend. We were invited to join this large group for a three night trip. We had not gone camping for a while — my youngest not able to handle the usual activities of hiking, quietly sleeping with others in a tent and appreciating the outdoors. So initially, I was ready to spend just one night with her, ready to pack up our belongings and drive back home if necessary. Instead we decided our family would join the others early Saturday and return home late Sunday night. We all wanted this to work out.  I know the names of all the parents and kids. I can identify the makes of the SUVs and vans they all drive. I can closely guess the grades the kids are in and the professions of the parents. Yet, I really don’t know most of these families that well. What I did find out during that weekend was that in our group, about ten households had an issue. I came to this awareness from listening to a parent of each family unit describe something troubling going on with their child — behaviors, medical concerns, mood disorder and social issues, sexuality, and learning problems. We all had children with special concerns. We all needed to seek professional help for our kids. I didn’t feel so alone anymore. I saw my daughter in a different light– a more gentle glow. And my hubby and I relaxed a little. We were not going to stand out, we were not so different from the others. All those times we suffered behind our closed doors, disturbances were occurring in the privacy of other homes.

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Parenting and Partnering

Parenting and Partnering

Reflection – Friday

I’ve had this CD on repeat — Lord Huron’s Strange Trails. I am drinking a glass of white wine, a Pinot Gris I bought to use in a pasta recipe I will tackle in a moment. But for now, I wonder about having guidelines for us.

I cannot see her playing in the backyard; I had asked her to play in the driveway with her toys. Can you say something? I ask my spouse. I’d like for her to follow directions.

He sighs. “It’s just that you’re so restrictive with her.  She’s outside, she’s playing.” He shrugs for effect.

Wait, what? Come again? Could you repeat that? I laughed and said, “Yeah, whatever!”

There are so many guidelines that I put into place when it comes to her. It’s true. Where she can play, with what exactly, in sight, certain amount of time and so on. Why? Because I have learned with her, that if I give an inch she takes a mile. And if there aren’t any guidelines she will do as she pleases– at the risk of safety and civility. It’s my job to keep her alive and well-mannered. 

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Social Isolation – Parents

Social Isolation – Parents

Week 6

WeeWMrs. M tells me my six year old had a rough day in her classroom– she snapped at others and snarled, “Don’t look at me, stop staring at me!!” while screaming and crying. Mrs. M and I wonder if this irritability is a negative side effect of her current medication. She’s been on it for over 5 weeks. I am frustrated and disappointed and sad for her.  I know she wants friendships. I know she wants that closeness, that special feeling of being understood and accepted. That shared giggle. The eye contact and physical closeness when seated together by choice at the lunch table. The request to play a game and she says yes. The yearning to disclose an experience, to tell another of a personal situation. I know she wants it.

I feel like I have had difficulties forming meaningful friendships the past ten years. Do I unintentionally annoy people, do I snarl? We’ve moved a few times, I have three kids a range of ages, we have not joined a congregation, I have not worked outside the home, we live in a city. I could go on and on with possible barriers.  My therapist tells me I have justifications every time she explores this area of difficulty. I don’t want to come across as defensive. I want to be a good client– open, receptive, honest, willing to try.  Why do I even have any struggles? There’s famine in the world. People are serving our country and returning disabled. There are refugees risking their lives seeking a safer place.

I hate being a whiner.

I want to connect.

I feel more alone now as a parent of a child with special needs.

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Parent Needs

Parent Needs

Week 5

We have completed a few weeks on medication for ADHD impulsivity. Maybe by the next appointment, we’ll feel or see some improvement. I think it is too soon to expect results. It’s too soon, right? I’m not missing something here, am I? I’d like some kind of sign that I have permission to job hunt. I have parent needs too.parent needs

I’ve lost a lot of self confidence over the years of staying home. I am efficient with running errands, planning meals that garner leftovers for another meal, and scheduling the kids to have appointments at the same time.  But with the outer world, the one outside my front door, the world is changing. Fast. Sometimes I feel like time is running out. When will it be the time for me to leave the house, when she’s in high school? Who knows what behaviors she’ll need professional help with then? There is always a good reason with special needs kids to remain a stay at home parent. 

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ADHD Medication

Waiting for the Effects of ADHD Medication

Week 4

We did not go away for Spring Break. Get the tissues out, boo-hoo. This happens for us with my husband’s career. I’ve been really supportive to his work and demanding hours. I get it. It’s just that sometimes seeing everyone around us pack up their cars, hearing everyone’s plans for the week off, and feeling the need for something different to our routine, I feel sorry for myself when we stay home during any of the school year breaks. This year I changed that.

My solution has been to rent a cabin for a few days about an hour away. We take the dog, we bring food for all the meals, and for two nights he is able to put work on hold. The boys take a respite from their electronic devices. They flip a coin over who will sit next to the pooch; the loser sits near her. My husband attempts to delegate duties of packing the car. This never goes well. He does most of it, huffing and muttering up and down the driveway. I opt to stay inside programming the auto-feeder for the cats. Every time we go on this kind of trip, we manage to leave an hour later than planned, our bodies are crammed into the vehicle, trash bags for suitcases stuffed in every space and my hubby annoyed that his guitar never fits. The excitement increases over car ride games. I pop in an old Pearl Jam cd. We’re off!

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Stealing Food

My Young Child is Stealing Food

Week 2

young child is stealing food

How about stealing time to play!

Stealing food from children. Really? That is how Mrs. M wrote it in her message. We are starting week two of medication or in other words, it is day eight. I know in my heart that I am uncomfortable with my child needing medication. But as I put it to her brothers, it’s like needing glasses. All that squinting, missing homework assignments written on the whiteboard, not seeing the lacrosse ball– my kid needed corrective lenses for better focus. Did this completely change his life? Yes and no.  The non-stimulant ADHD medication will hopefully change her life and ours for the better. After I had returned to our therapist for a consultation, after having a medication evaluation and after a few days of starting the medication, I got a long email from her kindergarten teacher. As soon as I opened it, I braced myself. Four paragraphs. What now?  Well, turns out that for the past 6 or so weeks food has gone missing from her students’ lunch boxes. And surprisingly while we were on a family trip for three days, nothing happened. Yet when we returned, the missing of items resumed. Mystery solved? Yes. Problem corrected? No.

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ADHD – Impulsivity

ADHD Impulsivity

Week 1

It was time. She was having rough days 9 out of every 10 school days.  Her impulsivity was significant — she was lying, stealing, and sneaking food each weekend. Every once in a while, we had that uneventful day. The last one still fresh in my memory.

“Isn’t it great I had a good day?” she asked me, her wide toothy grin in the rearview mirror. She has the look of wanting validation.  “Yes, it is. It’s a day you can have every day.”

ADHD impulsivity

Her special needs are not immediately visible.

Again, she revisited the topic. “Isn’t it so special! I had a great day! Are you happy, Momma?”  I answered, “Yes, I am. I know you can have lots of good days.”

The self-praises continued that afternoon. By dinner time she had revised once more, “I love having good days! I was so special today, right Momma?”  I made the silent coyote signal with my hand, gesturing for her to be quiet. Then I corrected, “It’s not special and you are not behaving special. Your teacher said it wasn’t a bad day. That’s what she said!”

And there it was, my words cutting through the glee. Yes, it is time. Our former therapist emailed me back with instructions to fill out the intake paperwork so that we can schedule a consultation with her. Within 18 hours, I had completed the hefty packet and hand delivered it to her office. I wrote her: when are you free?

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Parenting Special Needs

Hard Work

My daughter had a rocky start to her life in this world. She was born into a lifestyle of irresponsibility. The State Child Welfare department removed her from her birth parents due to neglect. I imagine this means not feeding her when necessary, not responding to her crying within a reasonable time, and neighbors calling in concerns. We will never know for sure what happened between those four walls. Next up she lived in a home with a sedentary, food fixated lifestyle. We will never know the details of living in that foster home. Fast forward three years and she moved in with us. At age 3 ½, she was diagnosed as developmentally delayed.

What I do know is she is very bright, adventurous, and eager for social activities. When she is approached by others — familiar and not– she will happily chit chat. She blurts out answers in her kindergarten classroom, unable to hold back her knowledge. She runs ahead, wanting to be first. She laughs loudly at something amusing. She looked up at the sky watching a plane, then announced, “Some day I am going to see the world!”

parenting special needs

A lot of classroom work does not get completed with our special needs little one.

My daughter has to make an effort all day long to use adaptive skills. It is her full-time job. Her teacher observed that she will have to work harder than the others. When she is focused, willing to follow through, and kind to others we have delightful days. When she slacks off, I get the report that it was a “rough” day. Not, “she had a rough one”, but it was difficult for everyone rough day. Each school day, she needs to practice socializing positively with classmates and adults, paying attention and not interrupting, and regulating her emotions. Sometimes just saying to her, “I know it’s hard, you are working hard, and I can tell you are trying” emits a smile of relief. Her little face looking upward to me relaxing and nodding. Other times, I say, “What happened today? what made it so hard to be nice to classmates? Screaming at  ____ and not moving your chair to make room for _____ and pushing _____ on the playground and he fell!” I dunno she says quietly looking down. “Well, something made it hard today…? what makes it ok to be mean to others?”  I dunno is the repeated reply. I give up. Retcha-fretcha-don’t understand is my mumbling rant I make as we walk to the car. I let it go for a while. Then I work on practicing with her. “Let’s go over a situation,” I say. “I’ll be a kid who wants to sit next to the window. Can you tell me in nice words that YOU want to sit there…?”  I know it is not an easy task for her. And so I try to have compassion.

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Stealing and Lying Behaviors

Stealing and Lying Behaviors

Reflection – Tuesday 

Parenting — the good, the bad, and the ugly behaviors.  I am sitting here with a pilsner and listening to The Essential Johnny Cash cd. I think back on what happened earlier today.

I was waiting my turn.  I stood behind a few other parents — we have the difficult ones, the children who have rough days. Other parents wait across the blacktop or are in deep conversations, quickly glancing up and nodding to Mrs. M that they are present for dismissal.  I moved up the line.  Mrs. M informed me of how my child hurt another classmate’s hand. She goes on to briefly describe other parts of the day.  I asked her where on the spectrum in her class of twenty does my child’s behaviors fall; how typical are her behaviors? Mrs. M quickly responded: far from typical. Mrs. M bent down and said gently to her, “I really hope that you have a better day tomorrow.”

stealing and lying behaviors

Despite all the difficulties, we assure her she is well loved.

Why do I feel defeated, why do I personalize my children’s difficulties?  A few times a week I am hearing from her kindergarten teacher an entire day of disruptive and/or aggressive behaviors. The time has come.  When we returned home, I took a deep breath and composed an email:  Can we return to see you again? She is not doing well.  I need help too.  

I have been reluctant to write to Beth, to ask if we can return to therapy. I thought I could figure this out, try another reward system, give it time and let her mature on her own. I fluctuate between acceptance of having a special needs child and wanting to defend her actions, to rationalize her personality traits. My youngest has a different energy than her older brothers. She loves to be silly, she wants people to laugh at her, she’ll do anything to get attention. She does not care for rules — she decides when she wants to follow them.  She is chatty, she is loud. Well actually so are the boys — at times. They know when and where to be comical, when and where to rebel, and how to make friends. Does everything challenging need to be directly related to her adoption from foster care?! Is she going to have special needs for the next 12 grades?

I was perusing the hundreds of informational websites on adoption. I came across an interesting post from creatingafamily.org. There was a list of questions that potential adopting parents should consider. One was: if she were to not get any better than the way she is now, could you handle her behaviors?

I know we have made tremendous progress in our home over the past three years. Yet, this past weekend was a doozy.  She snuck food, she took items from family members,  and she lied. She fed the dog an entire box of frozen appetizers from Trader Joe’s. That is what she answered when I found the empty box. Or did she lie and consume all 15 pastry pups herself? We waited nervously for 12 hours monitoring our dog’s digestion. She took items from her brother’s room. I confronted her, inquiring about the items. With a quizzical face she answered, “I don’t remember doing that…”  I observed to her that the dog was circling her, did she have food with her? She answered, “Not in my hands.” I searched the entire playroom, then found sesame seeds in a lego container. Not my jumbo bagels, I had three left! I had just re-arranged our kitchen by placing all the yummies on higher shelves in the pantry cupboard. I didn’t know how else to protect the contents of the larder.  My husband said to her:  do we really need to put cabinet locks everywhere? even here (pointing to the base cabinet), where the condiments are? would you eat this?  She informed him she would not be interested in the sealed glass jar of thai curry sauce as the glass jar would make a noise when she opened it.

* OMG *

The food obsession, stealing items from others, and lying. I don’t understand how and when she had become wily; she’s become a master of deceit. Will I be able to handle these behaviors lasting a lifetime? Maybe being able to tolerate is a better way to phrase that question. Maybe it’s a question I don’t want to give much thought.  I think about her negative behaviors.  All of them involve an outburst of some kind — emotional or physical, and a lack of judgement.  She has no impulse control.  She doesn’t have that skill, that ability to pause; she just reacts. Is this anxiety? a heightened sense of arousal due to her early trauma? is this a form of ADD/ADHD?

I know sage advice is to not take things personally. For me, it’s difficult to heed that saying when parenting is involved.  I’ve invested time and emotions into raising my kids. I’ve entwined myself with their difficulties.  And yet, something is off, something feels different.  Her hypersensitivity and impulsivity are looming large — lengthy words and heavy conditions. We don’t have a grip on either or both. It’s been three years and she is now 6 ½. I took a deep breath, I tell myself:

We are parents to a special needs child. She is floundering at her school and at home. It’s time to return for professional help.  We need strategies and we may need medication.

Beth, please email me soon.