New here-introduction

iVillage Member
Registered: 08-07-2003
New here-introduction
3
Thu, 08-07-2003 - 10:11pm
Hi.My name is Kate and I have three children. Caroline(5.5),Erinn(4) and Patrick(2). Patrick was a 31 week preemie and is involved in EI in NJ. He has OT two times per week now (recently increased). We became involved in EI when Patrick turned 18 months after a screening at our local hospital. Patrick was identified as being high risk for developmental disabilities due to severe illness at birth. He was evaluated for sensory integration dysfunction. We have an appointment with a developmental pediatrician on Sept.10 and I feel that he meets the criteria for PDD-NOS or mild autism. His eye contact is minimal, his interaction with others outside myself and dh is minimal as well, including our daughters. He is verbal, but mostly it's not relevant to the situation. We have had a speech eval. done privately and he was diagnosed with a brain coordination disorder. He is extremely active and has little regard to personal safety. He is also a very sweet, good-natured little boy for the most part. One year ago today, I thought our worries were over because we made it through the first year and all of his physical illneses associated with his prematurity and he was sailing through all of the milestones. Today is a whole different story. I feel as if nobody understands what we're going through. Our families think he'll catch up, he's a boy, all kids develop differently,etc....This makes me feel as if I'm overreacting. We also have a nephew Patrick's age who is leaps and bounds developmentally compared to Patrick and my sister-in-law and in-laws are not particulary sensitive to our feelings about this. We have to hear of all of our nephew's newest talents on a daily basis. I know that it's not meant to be hurtful but it is.I really could use some help dealing with them especially. Any advice is greatly appreciated! Sorry for the book-Kate
iVillage Member
Registered: 07-11-2003
Fri, 08-08-2003 - 6:05am
Hi, Kate, welcome to the board! :)

I have three kids on the Autism Spectrum, but one could be Patricks twin. My 8yo dd was also a 31wk preemie. We were told for the first few years that her problems were due solely to her ALIS but we figured out after a few years that there was something else different about her. She was dx'd with HFA 3 years ago. It turned out that autism ran in my family but to such a light degree (Asperger's) that it had never been noticed before. Her neuro thinks her autism was agravated by her being born so early.

Wow, I hardly ever get to talk to other parents of kids who were born so premature. How much did Patrick weight when he was born? Jade was 4 lbs 4 oz. I am told that is very heavy. You couldn't tell by looking at her now though, she's rail thin and 5" shorter than the average girl her age. I call her Lillapution b/c of how tiny she is. She looks like she's 5 (and she'll be 9 in a week).

Did Patrick have any major complications at birth? Jade had RDS and was on a vent for 2 months, apnia monitors and oxy until she was 2yo. She has Alternating Strabismus of the right eye. We opted for the patch therapy instead of surgery for that and she's doing great. She also had several muscles that were underdeveloped, one, in her left shoulder, still gives her problems sometimes. nothing major, just needs to be rubbed out every few days (she loves that, lol).

Jade used to be very withdrawn. She would only interact with me or my mom before she was 4. She wouldn't even cuddle or play with her dad. I got really sick when she was three and she had to go live with my mom for 4 mo b/c no one else could get her to open up or communicate her needs. But that all stopped when I met my current DH. He was great with her in a very strange kinda way. They didn't really talk to each other, they just sorta 'clicked'. He never pushed her so when ever she needed something she would go to him. A few years later we found out he has Apserger's. But that first year with him was something else. She just blossomed. She started talking really well and practiced on everyone she met. LOL.

I hear ya when you say you are tired of hearing how your ds will 'grow out of it' or 'every child developes differently', we got that a lot over Jade and Ayla (12 PDD). With jade they kept saying "Oh, well, she WAS born premature, maybe she justneeds a little more time." Yeah, like I wasn't there when she was born and have no clue how early that was. And in Ayla's case everyone said "You're jumping to conclusions, she'll catch up when she's ready." Well, she's 12 now and has the fine motor skills of a 4yo. Her dad hates it when I point that out, he refuses to believe she's autistic. (SHE, on the other hand, is relieved to know that there is a reason for why she's different).

Jade has SID too. She leaps, growls, and shreaks at just about everything....at least everything that 'normal' people don't (like babies laughing, jingle bells, people talking to her). And the things that other people freak out about (spurting blood, snakes, fire running rampit in the kitchen, sirens going off) she just looks at curiously. She once stepped on a peice of glass and cut her foot so bad it almost needed stiches, but she didn't even reallize it until it was pointed out to her. And we didn't notice it until she left thick trail of blood through the house. She never flintched or whimpered once!

Okay, I let this go long, lol, sorry.

Again, welcome to the board! Look forward to getting to know you better. :)

Peace,

Candes (who's really bad at spelling...my only excuse is that I'm dyslexic. that, and my dictionary is across the room and I'm too tired to get up and get it. lol)

iVillage Member
Registered: 08-07-2003
Sat, 08-09-2003 - 2:30pm
Hi Candes. Wow! Jade's and Patrick's stories are quite similar. I'll try to give you the abridged version of Patrick's story. My husband and I have a blood imcompatibility and Patrick required 4 inutero transfusions before birth. On the fourth transfusion he started having heart decels so the perinatologists decided to deliver him at 31 weeks. He was pretty large in size as well at 3lbs,11oz. He was very ill and we almost lost him several times in the first few days. He had respiratory distress syndrome, pulmonary hypertension, pulmonary hemmorhaging, PDA, VSD and I'm sure I'm missing a few. Once he got past his first week of life, he did very well and was off the vent in about 10 days. He was in NICU for only 4.5 weeks. He also came home on oxygen and an apnea monitor. He wasn't on the o2 too long once he was home-about 4 months. The apnea monitor was a little longer. I have always worried about long term effects. He was "bagged" every 15 minutes for the first day of life. There must have been some oxygen loss and maybe that "triggered" something. I don't know, but this is the last place I thought I would be one year ago as his development was right on track for his adjusted age. It's so hard and I think I'll feel some consolation when we get a diagnosis. It's good to hear from a fellow preemie mom, especially since our stories are so similar. Thanks for your support. Talk to you soon!-Kate
iVillage Member
Registered: 04-05-2003
Tue, 08-12-2003 - 1:03am
Hi Kate,

Welcome to a wonderful board. Candes is a great source of information and a even greater source of comfort when you need to let loose.

I have a 9 year ds Aspie with SID and have dreadful problems with the in-laws, so I can relate. Think a a bad combination of the Barone's from Everybody Loves Raymond and the Costanza's from Seinfeld and you've got my in-laws. My attitude towards them is too bad, you're the ones missing out, not us. With a special needs kid, you need to surround yourself and him with people that are supportive, love him and care about him enough to learn about what he has and help. Life is just too difficult to deal with more difficult people. My family on the other hand is completely supportive and wonderful. They work within his limits and don't impose their will on him.

A few weeks after my son went on meds, my MIL proclaimed him "cured" and said I told you he would outgrow it. We told her he was on meds and she he didn't need them. My SIL and BIL think if we stop "giving in to him and let him know that we're in charge, then there won't be any problems". Mind you they only see him at family events, which are a horrible experience for all involved because he's screaming, rocking, and getting very over stimulated because they all are so overstimulating. My in-law have no concept of time. My son has too much of a concept of time. I told them to bring him at 3 PM and they showed up at 5PM without a phone call to tell me they were going to be late. I was really angry and worried and he was really angry because they didn't keep my word. He had a three hour meltdown afterwards. That's one reason he's on meds.

You mentioned that you live in NJ and I do to. We had our son's testing done at Children's at Mountainside and they were a great help. They were dead on with the diagnosis. It was great to have the paperwork that said that he has Asperger's so I could should my in-laws that we weren't making it up. They still don't see that he has a problem.