A Day in the Life of a Mother of a Special Needs Child

I was woken by wailing and the sound of running up and down the hallway. I listened to what was happening beyond my door and what I heard was yet another fit. My child was in the middle of a full blown tantrum.

I listened to see if I could figure out what this one was about. Special needs parents often struggle even knowing at times why their child is tantruming. As I investigated by listening beyond the door I heard it was about ointment that was needed to go on my child’s arm. Ointment. Not something tantrum worthy in my opinion. But in her world it was a big deal.

My child suffers with eczema. It can get bad and because my child struggles with obsessive compulsive outbursts of behavior often she scratches or picks the spots which make them bleed. This is not a good thing for obvious reasons of infection or scarring. Yet, whatever we say, it is not enough to stop it.

Apparently this morning my husband was trying to put the medicine on her arms and she lost control big time. As I listened to the arguing and the uncontrollable crying and running all I could do was whisper a prayer. I then picked up the phone and called, just to see, if I could get an appointment to the doctor because no one was winning in our current situation.

First, they had an appointment but it was with a new doctor. I knew my child would have a very difficult time with this change but the current tantrum was so bad I did not even see how it mattered anymore. We left to see this doctor and I was so thankful because this doctor is one who has successfully raised a child with Aspergers. He was not only able to give us a better medicine that probably would not hurt my child but also was able to listen to this morning’s tantrum story and behavior report and be encouraging to me as a mother.

Aspergers Disorder is a difficult territory to navigate because there is no instruction book. The simple fact that there is no evidence of an outward disability sets them up for failure sometimes. Their condition is invisible to the human eye so it is often over-looked. There are key factors, sensory triggers, words, and social situations that could cause this kind of episode at any time. And a tantrum may seem like not a big deal but my child is ten. A ten year old throwing tantrums is not acceptable.

I was thankful too though that the doctor encouraged me by affirming my decision to homeschool because socially this child needs more guidance than the typical child. Homeschooling allows me the opportunity to observe and correct or encourage in social interactions. It also helps me protect her from bully situations where one might try to take advantage of someone who cannot understand social interactions or behavior.

I grieve because this type of episode makes it a hard place to live as a sibling as well. My oldest has gotten used to it but grieves deeply. I often struggle thinking of the inability of these two remaining friends. They love each other dearly and if it came down to it they would sacrifice for each other but they struggle to really get along in the day in, day out of things.

Then my youngest, who is five, is surpassing my ten year old because he has never thrown a fit this bad in his life. I hope he doesn’t learn from it or try to copy it. I had to finally explain to him that her brain is different and she does not mean to do it. His only way to comprehend was to say, “Oh she has a headache.” I asked both siblings to stay away from her when this happens and pray.

Ironically, after the doctor’s visit my child was given a sticker and a sucker. She intentionally chose a batman sticker for her little brother and the sucker for her sister. It was thoughtful. It helps my heart see that she does really care for them. Instead of choosing for herself she thought of them. That is huge.

After the tantrum she was regretful, even remorseful. She feels bad when she does it. She even wishes she could take it back. She is able to redirect her behavior and move forward. However, the damage of the storm she created remains. Pieces are shattered that are not easily restored. Actions like these devastate relationships and as a mother I sit back and ponder. I grieve for normalcy. I question the why of it all and what good could this all bring? I don’t have answers. I don’t know what I am doing.

The things I do know however and am continually reminded of are as follows:

1-One day all this brokenness will be restored. This is NOT permanent!

2-God is in control, regardless of how painful or how much of a trial this is, He is in control. He is good. I can trust His goodness in this though I do not understand.

3-I can use this experience each and every time it happens to point each of us to Christ. For us to see our desperate need and help us to see what He has already done for us. We can cling to the cross and His finished work. We can be stretched and learn to trust. We will be people of increased faith; each one of us.

4-God chose our family. He did not make a mistake. We are an interesting grouping of individuals with our own quirks and sin struggles. We also come with our own strengths and talents. We, together, work as a team. We do not let anyone fall behind. We strive to make each of us all we were meant to be in HIM.

5-It is great opportunity to depend on God in continual prayer. The beauty of not knowing what you are doing and knowing you are not qualified for a task is the desperation to stay connected to God who does know. He gives me ideas like calling the doctor today.

Be encouraged. You were given the children that God chose for your family. He will equip you with everything you need to complete the task at hand. God is good like that. He will also help you to be all you were meant to be. Because He uses each one in a family to mold and shape the others into Christ likeness. Press on and do not give up!



Angela Parsley – Encouragement and Special Needs

Angela Parsley describes herself as an ordinary girl loved by an extraordinary God! She is a coffee lover to a fault, mother of 3 children ranging in age from 5 – 12, and wife to an amazing husband, author, and Bible teacher. She spends her time managing her family but in her free time she likes to write at her blog refreshmysoul.com. You can also find her at Comfort in the Midst of Chaos, a special needs blog and Life Letter Cafe, an encouragement blog.

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