Interview: Lori's Child

Ok everyone here is another new interview. Lori found us and asked to do an interview. She adopted her son from China and recently found out that he has SPD. Please give her a warm welcome and show her some support. Thanks!

My name is Lori and I am a 43 year old stay at home mom to one child, "M". Our family -- "M", and my husband and I -- live in the Ohio.

~ How old was your son when you adopted him?
"M" was 10 months old when we adopted him.


~ What was his life like before he was blessed with you?
"M" lived in an orphanage for the first 10 months of his life. We did not get to visit the orphanage, but we did see pictures of it and it appeared to be in good repair, well kept and clean. His primary caregiver had 7 children that she cared for at the orphanage. When we adopted him, his head was very flat on the backside indicating that he spent most of his time on his back in his crib. He also held his arms at an odd angle -- at 90 degree angles to his body, which is the only place he would be able to see his arms if he was lying down. The flat head has corrected itself and the odd arm holding disappeared after a couple of months with us.

~ How old is your son?
"M" is currently 28 months old.

~ When did you first notice that something just wasn't 100% with your son?
We always thought that something was different about "M". The adoption agencies always tell you that it takes about a year for these kids to catch up. At 10 months old, "M" could not sit up by himself or roll over. In the first few months he did catch on to lots of things pretty quickly. I remember the first night he rolled over he was about 11 months and he did it all night because it was so exciting to him. He did not sleep a wink that night.

After we had "M" home for a year, it just didn't seem like he was catching up anymore. In fact, in some respects it seemed like he was falling further behind. Also, he mastered things in very strange ways. For example, he would walk between my husband and I at about 13 months, but he completely stopped doing that after about a month. I attributed it to the fact that he had learned to crawl and that was good enough with him, but he did not attempt walking again until about 20 months. He mastered using a spoon at about 18 months. Over the last 10 months, he has regressed with respect to utensils. Sometimes he will use them like a champ for several weeks and then refuse to use them for several weeks. Right now, he is refusing to use any utensils or plates. He learns new words and then never uses them again. Occasionally, he will revert to crawling.

The biggest thing that clued me in to a potential problem was the fact that "M" did not "play" with toys. He just mouthed them and put them places -- even at 2 years old. When in a group play setting, "M" did not participate -- just fluttered around the edges doing his own thing. "M" does not like to crawl up on things, go down sliding boards, ride on riding toys or play with balls (he just hugs them and carries them around -- very sweet but concerning).

~ When was your son diagnosed? And how old was he?
"M" was just officially diagnosed this week, though I did my own diagnosis weeks ago. The way it all came about was very strange. We had been seeing an occupational therapist since October for help with "M's" fine motor skills. At one appointment in January, "M" was acting up, throwing tantrums, not wanting to participate. The OT suggested that "M" may benefit from a brushng protocol. She explained it to me and I thought it sounded very strange. I went home and did some on line research and discovered Sensory Processing Disorder. At this point, no one had told me anything about this disorder. I got several books and read them and knew that this is what afflicts "M". It was kind of like being told you need to have chemo for a liver problem, going home and looking on line to find out what chemo treats and finding out you had cancer -- strange! I knew I had to find a local "expert" to help us and I was able to do so. We met with her this week for an evaluation and she confirmed what I have known.

~ What kind of therapy (if any) does your child receive?
"M" currently receives Occupational Therapy once a week and Speech Therapy once a week. We are seeing the Physical Therapist who is the Sensory Processing Disorder expert twice a month and an Early Intervention Specialist twice a month.

~ Do you feel like the therapy is helping?
I have not had an overhelming feeling that any of our therapies are helping tremendously and I feel like it is because of a lack of focus on SPD thus far. Now that all therapists involved know about "M's" sensory issues, I feel like we are going to be getting more focused therapy and that we should see improvements.

~ What is your biggest challenge that you face with SPD?
I think "M" is so inhibited physically that it is affecting everything he does. That is "M's" biggest challenge. My biggest challenge is finding enough time in the day to get all of his therapies completed, get play time in, feed my family, get "M" to his multitudes of therapy appointments and still find time to clean my house! AND I'M A STAY AT HOME MOM! I really don't know how anyone who is working can keep up with it all.

~ What are some of the things you do with your son to help them during a meltdown or tantrum?
"M" responds well to giant bear hugs. Also, if I can get him to laugh, we are done with the tantrum. Tickling sometimes does it for him and I know that sounds strange as many children with SPD do not resond well to tickling. It seems to work for him. His latest thing is hitting and head butting -- that is a challenging one as I sometimes cannot get close enough to give him a hug without getting a head butt to the lip. In fact, I had a bloody lip just this morning.

~ What are some of your son's symptoms?
"M" has a very interesting way of eating. As I described above, he refuses utensils and plates but that isn't the only eating issue. He will put food in his mouth, chew it and then spit it out. He has done this since he started eating table food and we, of course, had hoped he would "outgrow" this lovely trait by now, but he hasn't. It makes for some very messy meals.

"M" has very distinct "good" days and "bad" days. On bad days, he just wants me to hold him and listen to music. He walks around crying alot. Thankfully, we have not had a full blown bad day since early January. Can that be because of brushing as that is when we started? I'm not sure. Good days are peppered with lots of giggling, lots of energy and lots of energetic head shaking and ear covering. We have tantrums on both kinds of days.

~ How do you deal with your stress?
I have discovered the awesome benefits of strenuous exercise. I get up at 5:20 to get to the gym by 6 and home before "M's" dad leaves for work. I know I'm going to be exhausted by "M's" naptime anyway, so since I'm going to nap at that time, I figured I might as well get up early. It is also of huge benefit in handling my stress to interact with other parents who have children with these same issues.

~ What is something you want all parents of children with SPD to know?
I don't really have enough knowledge to answer that question yet but there is something I want all parents of ALL children to consider. It seems to me like MOST learning disabilities are based in some way to sensory issues, and our local "expert" agrees. If parents don't address them properly then they may just end up on the ADHD/ADD drug bandwagon needlessly. Also, if you THINK that something isn't 100% about your child, you are probably right. Find out what it is because the younger your child is when these issues are brought to light, the easier they will be to remedy. It could mean the difference between 6 months of therapy vs. years of therapy. These aren't issues that children just "outgrow", they grow around them making it more difficult to get to the source.

Thank you for interviewing me! I hope I've been of some help to someone.

If you have any advice or kind words for Lori and her family please leave a comment. Let's all give her a big thank you for joining us and telling us about her and her family.

Thanks Lori!

SPD Interview #1: Mommy Cracked

Here at the SPD Life we are going to have interviews on parents who have a child(ren) with SPD every now and then. We will ask them to share their story and answer some interview questions. This will enable us all to get to know each other a little better *and* give other tips and advice on how we each work with our kids.

So our first interview is Mandy from Mommy Cracked. Here is her story and her answers to our questions.

My Story:
When we received our son's diagnosis of SPD we were confused, a little sad for all he has gone through, but also elated to finally have answers to the many questions about his behavior that had puzzled us from the time he was almost 2 years old. We were almost resigned to the fact that our son was very strong willed and highly temperamental, but as an educator, I knew that these "quirks" in his behavior were not normal. Our pediatrician didn't think there was a problem until our son was 3 years old and still not speaking full sentences. I also happened to film a particularly draining tantrum of his with my digital camera and showed it to our doctor. He was immediately concerned and we were referred to a neurologist and speech pathologist for further testing. Our pediatrician suspected that he may have a high functioning form of autism but did not want to diagnose it without neurological testing.

It was the speech pathologist who was also trained in occupational therapy that diagnosed our son when his neurological exam came back fine. She was a pediatric OT and knew immediately what the problem was. After completing a questionnaire on our son's developmental and behavioral habits, she was able to schedule him for his first therapy session. After 8 months of occupational and speech therapy our son is now speaking in full sentences, able to handle motion like swinging, and thriving in a 3 year old kindergarten classroom. We still have our days when the meltdowns and tantrums are really bad, but we have learned how to help our son through these times and give him the therapeutic play he needs to deal with his sensory issues.

When was your child diagnosed?

He was formally diagnosed at 3 years of age. The symptoms appeared much sooner, almost by age 2.

What is your biggest challenge that you face with SPD?
The misconception that his behavior is deliberate and that he chooses not to learn things like potty training simply because he doesn't want to or that his tantrums are because we are lenient on his behavior.

What are some of the things you do with your child to help them during a meltdown or tantrum?
When a tantrum occurs, I first remove him from the situation and take him to a quiet place. I hold him tightly and sing and rock. Sometimes he doesn't want to be held at all, so I just have to let him cry it out when all offers of comfort are refused.

What are some of your child's symptoms?
He develops vocal ticks, he is very upset if his routine changes slightly, small things like fingernail clipping or lightly touching his arm cause him to complain of pain, speech delays, becomes very anxious around crowds and is upset by loud noises. He can also stay awake for very long periods of time. When he has tantrums, they can last for up to 45 minutes and he almost seems like he is in a trance when he is crying...it is very hard to get him to focus on what you are saying when he is this upset.

Does your child receive therapy for SPD?
He received almost 8 months of occupational and speech therapy. Due to insurance problems we have had to discontinue those therapy sessions for the time being, but we work with him at home on the same concepts he was taught in therapy.

How do you deal with your stress?
I have to be really empathetic and remember what he is going through. When I need a break, his grandparents are wonderful about taking him for a night or a few hours to get some respite. His therapist has been a huge source of support in helping us understand and handle his diagnosis. I also connect with other SPD moms online to get support and help.

What is something you want all parents of children with SPD to know?
I want them to know that the diagnosis of SPD is not the sum whole of their child. It's simply a part that makes them unique. The challenges are difficult, to be sure, but their child is still so full of potential.

Thanks Mandy, for your story and answers! We appreciate you letting us get to know you and your situation a little better.

When was your child diagnosed? (POLL)

Please tell us when your child was diagnosed, and what types of services they receive...

My son was diagnosed in September 2008. I knew nothing about SPD until his Pediatrician brought it up at his 2 year check up. Then I got online and read as much as I could about it, and I shook my head the whole time, thinking "this is *totally* him". He receives O.T services weekly, D.I. services bi-weekly, and speech therapy once every 3 months.