Stressed mum

by G
(London)

From birth my son (now 4) was difficult. He had acute colic at 5 days old, he needed to be held tightly in order to fall asleep. He cried much of the day unless he was in his pram. He refused to eat anything other than pureed foods until 18/20 months. He was unable to feed himself until he was about 26 months. He never crawled, preferring to bum shuffle. He never pulled himself up on furniture but took his first steps around 18 months. He was an early talker (11 months), with a varied vocabulary by 14 months.


He hated loud noises and still dislikes large parties/gatherings, school concerts, hand dryers. He does need a constant hum of noise in the background. I first noticed he was a bit different when he was about 20 months. Everybody disagreed. He refused to join in music time, singing and dancing, imitating actions, preferring his own company he would wander away from groups and explore his surroundings. He had to touch, smell and taste everything. I couldn't understand why he was so different.

By 3 his behaviour became very challenging. His nursery teachers complained about his behaviour, being constantly on the go, knocking things over, bumping into other children and just that he was "different". So he was seen by a pediatrician who made a psychiatric referral as she thought he may have Asperger's Syndrome. He was seen by a renowned psychiatrist who discounted AS but diagnosed a conduct disorder.

We attended Parent - Child training sessions, we were also given an OT referral as he was described as having "floppy arm syndrome". We went to see an OT who diagnosed SPD. The NHS will only give us 7 sessions. After that its up to us.

Where do we go from here? I still don't fully appreciate how I can help him, consequently we all have short fuses, challenging behaviour and lots of tears (from everyone!). I really don't know what I can now, we have no support. At least I've find this site so I know we are not alone.

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Apr 21, 2009
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Hi
by: Anonymous

Hi G,
I just wanted to say I'm proud of you. I know exactly how you feel. Raising kids is hard. Having a child with sensory issues is sometimes impossible. My daughter as an infant cried from 3-7:00 every night unless I held her for her first 6 months. I called her "My Rib" because she panicked every time I was out of sight. She needed to be so close to me always... sometimes I just needed a moment to myself.

I became an avid gardener being out in the sunshine with my hands in the dirt became Zen for me. It was so life changing to realize she relied on me so much because she couldn't trust what her senses were telling her. Ordinary noises scared her to death so she had to see my face to know she could feel safe and try to ignore her brain's message. It's a huge task and most times exhausting. We didn't get answers until she was 6 and attended a 6 session program also. I felt a bit abandoned and wasn't sure how to carry-out her daily OT needs.

I realized that the playground was a great sensory gym. There were sand pits and swings, climbing bars and slides. I made obstacle courses using the playground including hopping and running. She loved it when we did it together timing ourselves to see if we could go faster.

You may really need to tap into the child in yourself which is so hard at times when your so tired, but I found the physical activity was a great release for me too! My daughter was always choosing to sit still coloring for hours I found she gained confidence being out in her environment. Once you get used to what your child needs it does come easier so there are better days ahead just be patient with yourself.
Heather

Apr 19, 2009
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You are not alone
by: Kim

I did the majority of the work for my son. You have to try everything and see what works. We have a very organized predictable day. We do heavy work throughout the day as well. My son needs a place to reorganize himself and we have a room with taupe walls and earthy colors. We can put on yoga type music which seems to help. We try to predict behavior and intervene prior to a problem. It does not always get "cured" but he and your family learn to manage it better each year through lots of trial and error.

The OT things can be done at home for the most part. I have a drying rack for clothing that is wooden. I used to give him "chip clips" and clothes pins to place on the rack. It helped build strength in his fingers. We discuss consequences of poor decisions prior to an outburst. We limit TV and computers because following the use of them he is a nightmare. What we do may not work for you, but you will learn over time how to help him. Good luck.

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