A Touch of Gray

Developmental Pediatrician tomorrow

25 Feb 2013 by Kathleen

Tonight Grayson went to bed early. Rare for him. Me on the other hand, I am up way too late. So is my husband but then he is a bit of a night owl and stays up later than me on a regular basis. I’m just up thinking about Grayson’s appointment with the developmental pediatrician tomorrow. I’m worried about him getting a diagnosis and being labeled. I am worried that he won’t get one and we’ll have a child who needs help but can’t get it when he gets older. I am worried they will want to evaluate him there and he’ll have a melt down like he did at the school evaluation. We have the follow up with the school this week too and we’ll see what the school psychiatrist says as well at the school therapists. Just going to be one of those weeks. My husband says if he gets a diagnosis that it doesn’t change anything. He’s still Grayson and he’s still the same son we love. And he’s right but I know there are some family members in particular who will be upset by the diagnosis. Mostly my husband’s mother who has already made it clear she is displeased Grayson has an occupational therapist and an early intervention worker. She was ok with the speech therapist originally back in 2011 but now she seems annoyed by that as well. She tells me Grayson is fine and smart and doesn’t need help.

Grayson is smart. That much is true. He knows his letters and numbers. He knows his colors and shapes. But he does need help. His OT gave us a copy of the evaluation she did with him last month and he shows severe sensory dysfunction in all area. While he is doing much better with speech and his basic understanding and ability to use language are much better and in the normal range, he still loves saying phrases like a broken record several times a day, still doesn’t ask questions or ask for things (just makes demand statements) and struggles to have a two sided conversation.

Grayson can’t handle things like the grocery store or library story time or the playground. He gets over stimulated and melts down. His OT gave us chewy tubes for him because he was chewing on all his sippy cup lids whenever he was upset. He also chews on plastic forks and straws. He still eats crayons and playdough no matter how many times he’s told they are not good to eat. I catch him putting toys in his mouth on a regular basis too. He’s now added lining up legos along with his cars. He obsessively opens and closes cupboards and plays with light switches. Today he had every cupboard in the kitchen open and shrieked when I tried closing them and had a melt down even thought he had not been in the kitchen when I tried sneaking in to close the cupboards.

Maybe I will try to get some sleep before I stress anymore.

Category: Autism, developmental pediatrician, Early Intervention, Sensory Processing Disorder Leave a Comment

Meltdowns

20 Feb 2013 by Kathleen

My son is having a meltdown every five minutes today. He’s like doctor Jekyll and mr. hyde. One minute he is throwing a tantrum. The next minute he is having a conversation with himself in a sweet voice.

I’d write more but frankly I’m worn out and craving chocolate after all the meltdowns he did today. Fork dropped while eating? Meltdown. Velcro undone on his shoe? Meltdown. No matter how much I gave him to eat today he kept saying “I hungry” and demanding food and each time he wanted food he was screeching. He has developed what I call the blood curdling scream of death. It is a horrendous and awful sound coming from my sweet boy. How can be my little sweetheart wanting to sit in my lap one moment and screaming the next?

The meltdowns happen constantly. Something is out of place, changed or just not going his way. If it’s happening because he did something he shouldn’t and is in trouble then he goes to time out but a lot of time he’s just melting down because he can’t cope with something and it’s like somehow in his mind he thinks shrieking up a storm is the appropriate way to handle it. It’s like that is his first response to anything and everything now and I don’t know how to help him.

On Sunday he was shrieking for no reason we could find. He wasn’t in trouble. Nothing had happened that we could see. Finally I took him and sat with him on my bed with his weighted blanket on him and started using his sensory brushes to brush his arms and back the way his OT had showed us. After a few moments he stopped screaming. I asked him what was wrong. His response? “I want to fly kite”. I asked him “You screamed because you wanted to fly a kite?” He said “Yes Mama. I want kite.”

He doesn’t have a kite. We’ve never flown a kite. I had no idea he knew what a kite was let alone that he wanted one yet he wanted one badly enough that he had a melt down over it. It would have made sense to have melt down if he had asked for a kite and been told he could not fly one but he had never said anything beforehand. I feel confused. I also feel sad. I don’t know how to help my son show a more appropriate response to wanting something then screaming. Why didn’t he just use the words he had to ask me instead of melting down?

Category: Autism, Grayson, Sensory Processing Disorder Leave a Comment

Developmental Pediatrician Visit: 2/25/13 and an update on everything

10 Feb 2013 by Kathleen

I have not updated in awhile and I am sorry. I am so tired with the holidays and then everything going on with Grayson. I worked on Christmas and New Years. It was not fun but Grayson enjoyed himself with Daddy those days so we survived. The week prior to Christmas we got an appointment scheduled to see the developmental pediatrician at the end of February. The closer the appointment gets the more stressed I get. Although I think in my head that I’ve accepted that my child is very likely on the autism spectrum, I think my heart still hasn’t.

He does things that fit with that diagnosis and things that do not. Plus he’s growing and changing all the time. He may be delayed but his development isn’t stagnant. His echolalia has gotten better lately. He still isn’t too great at a back and forth conversation and will still say his own thing rather than an appropriate response most of the time but he is not parroting the way that he was. And sometimes he does participate in talking with us. He is doing this more and more all the time. My mom even commented on how Grayson was echoing less and talking to her more when she babysat him a few weeks ago. His SLP says as long as he is progressing and continuing to gain skills that even if he gets a diagnosis it is not the end of the world. I think he will be ok. Diagnosis or not as long as he keeps making progress.

He started OT in January finally. I wish he had it every week but there is such a high demand for OT and such a long wait list that we are only able to go every other week. His OT has us using sensory brushes with him and has talked about a pressure shirt. We’ve talked to her about his sensory seeking and need for heavy work. Grayson of his own accord has been filling his fisher price shopping cart with books and most recently with little 3 pound weights I use for aerobics. His OT says it is a very good sign that he recognizes this need in himself.

He had his evaluation with the school district on Jan 23. He spent most of it having a melt down because he wanted some cars he saw in the room and well he is my car junky. It took a little help from his Thomas weighted blanket and a sippy cup plus being put in my lap for the meltdown to stop. I wanted to cry. He barely made it through the evaluation without melting down again. We don’t get the results until 2/27. The school psychiatrist was scribbling notes down. It made me nervous.

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Our first early intervention teacher visit

14 Dec 2012 by Kathleen

We had Grayson’s early intervention teacher visit for the first time on Wednesday. She is from Taiwan and apologized for her English but I thought she spoke fine. Grayson loved her and did his best to show off for her by dancing around the living room. She got to see some of Grayson’s finest moments like a melt down over not being able to throw a book and him refusing to follow instructions. more…

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Secondary Infertility: Gynecologist Visit

13 Dec 2012 by Kathleen

I saw my gynecologist yesterday.It was a depressing visit but then when you have pcos and secondary infertility, doctor’s visits are not fun. I spent my 20s without medical insurance. My only pcos treatment during that time was birth control that I was able to get for low cost at planned parenthood. Even before I had my official diagnosis, doctors were telling me to stay on birth control pills to regulate my cycles. more…

Category: Secondary Infertility Tags: gynecologist, secondary infertility Leave a Comment

Happy Birthday and Secondary Infertility

11 Dec 2012 by Kathleen

Today is my birthday. I am 32. I feel really old right now. Part of that is probably having a bouncy 2 year old to chase around all the time but part of it is our fertility struggles. I have polycystic ovarian syndrome and secondary infertility. For a long time it was untreated due to lack of medical coverage. Now this year I’ve finally started getting treatment for pcos for the first time since my diagnosis in 2009. I got pregnant with Grayson around the time I was diagnosed and I did not have medical coverage after my pregnancy until this year. I’ve probably known since 2002 that I had pcos just based on the symptoms but it took a long time to get that diagnosis. I was not really surprised when my doctor diagnosed me since I had known for a long time that was probably what was wrong with me. more…

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Sleeping Through The Night

10 Dec 2012 by Kathleen

Sleeping through the night on a regular basis is a huge milestone. Most people get a baby that sleeps consistently through the night by 6 months old. I have Grayson. He’s going to be three in March. He sleeps all night once or twice a month if we are lucky. If we get three nights in one month it is nothing short of a miracle.
more…

Category: Family, Grayson Tags: family, Grayson Leave a Comment

Whiny little boy

09 Dec 2012 by Kathleen

I am worried about Grayson today. He has been a very whiny little boy today. He was up about a million and one times during the night and got in bed with us but that is nothing new. More about Grayson’s lack of sleep and night wakings in a later post. He doesn’t sleep through the night and Daddy and Mommy are constantly sleep deprived. Truthfully, he is tired and cranky most days but being two he seems better able to fend off the sleepiness than we do. more…

Category: Echolalia, Expressive Language Delay, Grayson, Holidays Tags: echolalia, Expressive Language Delay, Grayson, holidays Leave a Comment

Grayson’s Christmas Tree

08 Dec 2012 by Kathleen

Grayson “helped” decorate the Christmas tree this week. I wasn’t sure he remembered our artificial tree from last year. Or the ornaments he stole, hid and ultimately broke. They were plastic but he somehow broke them anyway. He’s just a talented little boy like that.

I bought new ornaments. Just inexpensive, shatterproof blue and silver balls from Walmart. I still don’t trust the little guy with the Christmas Ornaments and didn’t know what he would do.

Let’s just say he surprised me. more…

Category: Family, Grayson, Holidays Tags: family, Grayson, holidays Leave a Comment

Transition Meeting with the School District

07 Dec 2012 by Kathleen

Wednesday afternoon we met with a school psychologist, an occupational therapist, a speech therapist and our family resource coordinator for Grayson’s transition meeting with the school district. They asked a ton of questions. They gave us a ton of paperwork to fill out. We got to hear all the ins and outs of what qualifies a child for developmental preschool.

While birth to 3 intervention requires just a significant delay of a standard deviation -1.5 or greater, the school district requires at least two significant delays. Grayson’s evaluation with early intervention put him at -1.75 in adaptive and -2,00 in social emotional which would qualify him but of course the school district wants to do another evaluation with him in January. He is also at -1.4 for cognitive which is borderline. He could test as just delayed in one area when they reevaluate him which would disqualify him for school services. He is getting private therapy for speech and soon OT at children’s therapy unit in Puyallup, Washington which will not stop when he turns three since they serve children through adolescence but I am concerned about him not getting school services. I think with two big delays he should but they may use a different evaluation tool. If Grayson does qualify for services, the psychologist said the best option for him would be developmental preschool. I really think he would benefit from it too.

He will be reevaluated by the school team on January 23rd. In the meantime, we are supposed to do a parent assessment with him at home to assess some of his skills as we witness them. We will also be having an early intervention teacher coming to our home to work with him starting on Wednesday 12/12/12 which is good. We are also still waiting on the referral to the developmental pediatrician. My doctor said it would be sent within a week but it still has not been from what I can tell when I login to my account on the clinics website. I tried to call them back today to find out what was going on as far as the referral but it was busy and I could not get through. Some days, I feel like I spend my entire lunch break at work on the phone talking to one person or another regarding Grayson.